A Final Note

The time has come to bid farewell to this blog. I will leave it up so that there will be a reference for people in the future who may be going through the same struggles we did. Perhaps it will be a source of information, maybe a comfort, and I hope a license to let people know it's OK to feel whatever they feel about what goes on with the person they love.

Most of all, I hope it helps someone else as much as it has helped me.

I love you, Mom. I miss you more than you'll ever know. And I hope this honors you.

Until we meet again,

Chris

And Now, Peace

Final arrangements have been made for Mom.

They are as follows:

Visitation will be held from 5 p.m. to 7 p.m. on Tuesday, December 2, 2008 at her church. The funeral will immediately follow the visitation. The name and address of the church is

Northside Christian Church
www.northsidechristian.org
5114 NW Old Pike Rd
Kansas City, MO 64118
(816) 452-5805

We'll be traveling to Berryville, Arkansas after the funeral for another visitation and graveside service. The rest of Mom's family is buried there in her hometown cemetery, and that's where she wanted to be as well.

Thank you all for your kind words, thoughts, wishes and prayers. My intent is to take a few days away from the blog now to concentrate on my family.

Blessings to you all, and finally, peace.

Safe In His Arms

In Loving Memory

of

Norma Jean Smith Humbard

July 29, 1933 - November 29, 2008

The Mom Watch

It's almost 10:30 p.m. and we're waiting on a visit from the Hospice nurse. He'll tell us whether or not it's safe for us to risk getting some sleep tonight.

Mom's respirations have been shallow and running 30 per minute. While her fingers and fingernails were blotchy and blueish earlier, since we have had her arms up on pillows that has faded and her coloring has returned to somewhat normal. However, her extremities remain cold while her temperature keeps rising. At last report it was 101.5 under her arm. She's been unresponsive almost all day.

The nighttime caregiver is here and looking for things to do. Hopefully we can put her on Mom Watch shortly while we get some rest.

I have a feeling the next few days are going to be pretty taxing.

One Date Down, Two To Go

Praise God from Whom all blessings flow! Mom made it all the way through Thanksgiving!

The nurse just left today. She changed out the catheter tubing, which had become very cloudy. She also gave us the dosing on atropine drops. Mom's lungs are sounding very coarse and the atropine drops help dry up the secretions that make them sound that way. The secretions are what cause what is normally referred to as the "death rattle" people have when they're trying to breathe as they die.

She also told us we need to leave Mom alone for fifteen minutes of every hour. Completely alone. She said this gives her a chance to die privately if that's what she wants to do. (Yes, Linds, I HEAR you!) For the past three days I've been afraid to leave the house because I've been afraid she'll die without me here. Today I may venture to the grocery store.

After all, it's Mom's death, not mine. It's about what she wants, not me. If she wants to spare us seeing her die, then that's what she'll have.

But the nurse was unsure as to whether it would be today or not.

For now, her hands have taken on the "dusky" look. Her swollen left foot is no longer swollen. She is so thin that her eyes and cheeks have sunken in. She barely resembles the mother I remember. She is all bone and sinew. Her heart beats anywhere from 108 to 116 beats a minute, and she has to have five liters of oxygen now.

My prayer is that God takes her soon.

Another Day To Be Thankful

Mom survived today - so far.

The nurse came in this afternoon and told us, "It won't be today."

We were, truly, thankful.

And so the waiting continues.

I'm living at Mom's for the time being. This will be the third night I've spent here, the most time I've spent under this roof since I left home. Sis has been here as well. We're reading, eating, turning, lotioning, giving meds, and doing everything it takes to keep us going and Mom comfortable.

Today we turned her bed in a different direction so we could fit two comfy rocking chairs in the room. It's much more cozy now, and no one has to sit on a hard chair.

We've noticed Mom's breathing is getting a bit more congested-sounding, but other than that she seems to be about the same. Our main goal is to keep her pain-free, and I think we're doing that well. The nurse today said he wished all of his patients looked as peaceful as Mom does, and that was a great comfort to us.

Thank You, God, for grace in the midst of trials.

A Day Of OK

Today Mom's heart rate has run between 112 and 128. Her output is half of what it was yesterday.

We are no longer acting as if she isn't dying when we're around her. We're letting our feelings come out. We encourage friends who come by to let their feelings show. We want her to know that she touched people and that she is loved.

Our cousins have all spoken with her by phone to say their goodbyes and to let her know it's time. It's OK for her to go. They'll be OK. So has Son, and both son-in-laws have come by to do the same.

And today Sis and I told her the same thing. Together. I teased Mom and told her she didn't have to worry because Sis was handling all the finances and I wouldn't have a chance to screw things up. Then we assured her we would both be here no matter what to see her through to the end so she didn't have to be scared. We promised no pain, and told her our hope was that she'd be dreaming one second and in Heaven the next.

And then we told her it was OK to let go whenever she felt God calling her Home. Not to hang on here a moment longer than necessary on our accounts, because we'd see her in the blink of an eye.

And she heard us.

So we'll see what tomorrow brings.

When Tears Fall Down

Mom's temperature is going up. Her heart rate is fast, and her breathing has slowed. We have the oxygen up to 4 liters now because she was having trouble breathing. That plus some pain meds relaxed her enough to where she was once again comfortable. Her oxygen saturation even at 4 liters is only 90. Normal, without the use of oxygen, would be around 98-100.

The nurse now says we are probably looking at Thanksgiving Day.

I called Son to let him know what to expect. Afterwards I went in to let Mom know I had spoken with him. As soon as I said his name, her eyes flew open. She wanted to hear what he had to say. I told her he said he loved her and he knew she loved him. I told her that he said he was going to be OK, and that he would take care of DIL and Cutie - that she didn't have to worry about him. I think she needed to hear that, because after I said it she closed her eyes again and rested.

We still need to get her eulogy written. We've been putting it off because we know how hard it will be to do. But as the time draws nearer it's something we have to do.

The Boy is thinking about Christmas. He asked me last night what I wanted for Christmas, and I started to cry, saying "Mom. Healthy and in her house, just as she was last year." Of course, that made him feel awful, and I didn't mean to do that. It was just a knee-jerk reaction. I can't think about Christmas now. I can't think about Thanksgiving. I can't think about CELEBRATING anything.

All I can think about is Mom. And today, all it seems I can do is cry.

Stroke Two

The nurse came in today and confirmed it. Mom had another stroke over the weekend.

The first stroke took her left side. This one seems to have taken her right for the most part, as well as her speech. She is still able to move her right arm a bit, but other than that and blinking she is immobile. She answers yes and no questions by blinking. She can't keep her mouth closed anymore when we give her pain meds, so we have to hold her head so that they don't fall out before they're absorbed.

The nurse has given her only a few days.

She suggested we continue to give her medication for delusions and pain as we have been since Mom is unable to tell us if she's in pain or what she is seeing or dreaming. I agreed wholeheartedly. We have never wanted Mom to suffer pain.

Given her condition, Sis and I stayed with her all day today and up until around 8:30 p.m. Since she's still breathing well we decided to get some rest at home and spend as much time with her as we can tomorrow. When it gets to the point that she is obviously failing we'll camp out over there around the clock. Right now we're resting as we can.

Resting includes reading books. In the past two weeks I have read ten books. It's to the point where I'm reading one a day now. I have to admit some of them are the worst books I've ever read in my entire life, but they keep my mind occupied. I can't get into anything that requires a lot of brain cells right now, so I find myself reading the same book with different characters over and over and over again. You know the one. Girl comes to town, meets boy, falls in love, something drastic happens to where their love can never be, girl is heartbroken, boy makes it all better, everybody rides off into the sunset together and lives happily ever after.

Even with all we've been through, I can honestly say I'm so very glad God had more imagination than that. I only wish the writers did.

Mom's friend Carol came to visit tonight. Tomorrow her friend Zora will come. They've both stood by her during this entire war, but never shed a tear in her presence. They've been strong for her. Now they can let their true feelings show without fear of scaring her. I honestly believe she knows her time is short, and it can't hurt to have caring friends show their love.

It's time.

Life As We Know It

The eruptions Mom has been suffering through at both ends seem to have subsided.

She is still unable to talk, leading us to believe that she may have suffered another stroke, or this could be part of the whole process. We just don't know. She's on oxygen all the time now because it seems to make her more comfortable. We are still giving her the medicines for pain and delusions on a regular basis even though she's asleep most of the time. We don't know what is and isn't going through her brain at this point, and if there's any chance she could be hurting we don't want to let that go unchecked.

Sis spent the night last night, and I was prepared to do the same tonight. However, since things have calmed down some I came home instead. I'll be back tomorrow morning to see the nurse and talk to her about the happenings of the weekend.

The funny part about this whole thing is that everything seems to have been going on for really long periods of time. For instance, tonight when I updated the weekday evening caregiver about Mom, it was hard for me to tell her how long it's been since the tube feeding was stopped. It seems like it's been stopped for a month, but it's been less than a week. It seems like I haven't been to work for a couple of months, but it's only been two weeks. It seems like Mom has been home for six months, but it's only been a month.

This whole thing has literally taken over our lives the past five months. I have to wonder how we're going to cope when it's all over. What happens when taking care of Mom is no longer the center of our days?

What kind of life will there be after Mom?

He's Watching Over Her

Since Mom's been off of the tube feeding we've been offering her food and water several times a day. Sometimes she'll take us up on it, sometimes not. Yesterday she slept all day long and neither ate nor drank anything all day. The only water she got was with her meds.

This morning at about 4:30 a.m. she began vomiting. The aide thought it was from drainage in her throat that she was trying to get rid of, and so did the nurse when she came in to check on Mom early this morning.

I got there around 10 a.m. to take over for the aide. There had been two different episodes, but none since around 8 a.m. Mom was sleeping peacefully. I made some coffee, checked on her, got a book to read, checked on her, and read my email. The next time I checked on her she had started throwing up again. And she didn't stop for a good long while.

Every fifteen minutes she'd empty her stomach again. I tried to call Hospice, but heard her on the monitor starting again as they answered. I dropped the phone and went in to help. Hubster showed up with The Boy to work in the yard, so I had him stay with her while I got my cell phone and some medication for her. She then threw up the medication.

But some of it must have stayed down because she finally stopped for a while. Long enough for a Hospice nurse to come in and give her a suppository to control the vomiting.

AND for Sis and me to learn how to administer one.

This would be number 432 on the list of Things I Never Thought I'd Have To Do In This Lifetime That I'm Now Doing Because It's My Mom And I Love Her. Oh Claire, you were SO right! God DOES provide grace when I need it!

As well as having problems with her stomach, Mom was unable to speak for the first time today. Early this evening we could tell it was frustrating her because she would move her hand and grunt, but not be able to form words. We're not sure if it's because of the medication or because of her decline.

The nurse who helped her this afternoon told us her digestive problems are yet another sign of her body shutting down. She estimated today that Mom may last another week, but hastened to tell us that she has had patients last much longer that have been in the same condition.

Sis was concerned that the amount of drugs we are giving Mom might be contributing to her decline. The nurse assured us that was not the case. She said we had gradually increased the pain relievers in order to keep Mom comfortable and their use was very appropriate in the amounts we were giving. She said we could back off on the pain medication in order to have Mom more alert, but that we would likely end up playing catch-up to get her comfortable again.

Sis will be staying late tonight to be sure things have calmed down stomach-wise. I'll be there early tomorrow.

But we know God's with her all the time.

Grace For The Journey

Nurse Ratchet has been under the weather the past couple of days. In her place, a lovely, caring, compassionate nurse by the name of Deanna has come out to check on Mom.

To give you an example of her compassion, let me tell you a story. Deanna and I were sitting at the bar in the kitchen discussing Mom's condition. Over the monitor we heard Mom groan. Before I could even get up from my chair, Deanna was in there to check and see what was wrong, comforting Mom, rearranging her position to make her more comfortable, and administering pain meds.

Now THAT'S what I'm talkin' about!

So today we made the arrangement permanent. Nurse Ratchet is no more. Deanna will be taking her place.

And speaking of pain, Mom had a lot of it today. From the time I arrived until the time Deanna left and even after then, Mom hurt. We finally had to give her a full cc of OxyFast to get on top of her pain, which ended up knocking her out for the greater part of the day. Then it started all over again this evening.

Sis will be talking with the evening caregiver to be sure Mom is given pain meds all night long to form a base for pain control for the daytime, whether she is asleep or awake. We're hoping this will alleviate some of the problems she's having. Pain control is so very important in all of this.

Mom's, that is. God will help us with ours.

My friend Claire reminded me of something I said when she was going through her mother's last days and when her husband faced cancer. I told her I didn't know how I could ever handle going through what she was going through. Her answer to me was that God supplied grace when it was needed.

And she's so very right.

Grace comes in many forms. Just today I read of how when the Israelites needed food in the desert, God commanded them to gather it. Not to be prideful and sit in their tents and whine about how hungry they were, but to accept His help by gathering it in.

In my own way, this is my gathering ground. This is the place where I have "gathered" all of you to help me through this journey. It's my stress reliever, my wailing post, my whining spot, my information booth, and my prayer closet. And it's God's bit of grace to me.

Thank you for joining in and for offering that grace I need - that grace we all need sometimes. You are appreciated.

Just so you know.

To Everything There Is A Season, And A Time For Every Purpose Under Heaven

The morning was good. Mom ate a cup of cream of wheat and drank a cup of coffee, then talked with Sis and Charise most of the m0rning. By the time I got there she had slowed down a bit and was ready for both pain medication and a nap. She ended up sleeping most of the rest of the day due to pain in her shoulder, leg and foot.

The nurse came in early this afternoon to evaluate her and ended up giving her a "helper" to clear her bowels. However, Mom was still unable to do so. The nurse said it was likely she was too weak. Around 8 p.m. we did have some result, but very little. We'll have to see what the nurse says tomorrow about further treatment.

Throughout the day today Mom had bites of this and that and drinks whenever she wanted them. We figured she had probably as many calories as she had been getting from the tube feeding just by doing that. The amounts were still very small.

When we first brought Mom home we thought she had possibly two weeks to live. But, being Mom, she's managed to prove us wrong. While we couldn't be happier, we are at the same time only slightly concerned about timing.

There are three dates coming up that would be very hard to have as dates for her passing. One is Thanksgiving Day, another is The Boy's birthday on December 3rd, and the third is Sis' birthday on December 7th.

While God will be the ultimate decision-maker as to when her time on earth should end, we would hope it would not be any of those three dates. Would you please pray with us accordingly? We would be very appreciative.

The Other Side Of The Swing

Today we decided to permanently disconnect Mom's feeding tube.

Sis and I discussed it after the nurse came to visit Mom. Mom hasn't had a BM in almost four days, even with the senna she's been taking. Today she began to gag while the feeding pump was running - one of the signs her stomach is not handling the food she is getting. We both agreed that the feeding tube is an artificial means of keeping her alive, and if she is no longer able to tolerate it we should discontinue it for her comfort. She will still be able to eat or drink anything she wants by mouth. As it is, she was getting less than 300 calories a day from the pump anyway.

Mom slept most of the day today, only waking for brief periods. Her pain seemed under control without additional meds.

It seems yesterday was a gift. Today we're back to the downswing.

Swinging

It was a very good day.

Yes, it meant we were on the upswing again. One that may or may not last for more than just today. But while it was here it was good.

Mom was very talkative. She conversed a good part of the morning even though she'd had a bath, which usually wears her slick. Then she had a nap and kept us hopping after that. We talked about the curtains, how the yard needed to be raked and her high school days. At one point she got suspicious of me asking so many questions and wanted to know why. I told her it was because I wanted to know more about her life.

It was then that she told me if I wanted so much information, I should ask my grandmother. Because, after all, my grandmother was standing right there. My grandmother who would have been 113 years old this year.

And did I mention that right after that she got a little extra of the anti-delusion drug?

She tickled Charise when Charise gave her medicine. She patted my cheek. She gave me hugs and kisses. She threatened to "cold cock" people right and left. She threw Roberta #2 and Roberta #3 across the room numerous times. And through it all she kept up a running conversation all day. She needed almost no pain medication the entire time I was there.

She was amazing. You'd almost never guess she was dying.

But I know how this works. Tomorrow the downswing may come and things may be the opposite of today, just as they were late last week. We just never know.

So we bottle up the good days and remember those on the bad days. We laugh while we can, say "I love you" while we can, and try to memorize her face while we can.

And we keep on swinging.

Sunday Dinner With Gratitude

There is something eerie about having Sunday dinner at Mom's without Mom at the table.

Today I was determined we would eat together as a family. On the way over to Mom's I stopped at the grocery store and picked up a roast and all the fixin's for a roast beef dinner. I put the roast on to cook shortly after I got there.

The rest of the family showed up to eat, including The Girl's boyfriend. We got dinner on the table, had the blessing, and everyone passed the food.

But it was strange.

Boyfriend was sitting in Mom's place. It just wasn't right somehow. And I know it won't be right from here on out. Even though she was there, she wasn't THERE. And it was hard to get through.

Today Mom was in a lot of pain for a good part of the day. She got pain meds at 10:15 a.m. and again at 10:30 a.m., and when those didn't work I gave her a small dose of her anti-delusion medication. Finally she was able to rest for a while.

But she was up again hurting at 1 p.m. This time her anti-delusion medication was due, so I gave her a full dose as well as a partial dose of pain meds. But by 5 p.m. when Sis came to take over she was in pain again. More meds.

Residuals at noon were 10 ccs, but at 5 p.m. they were 50 ccs. We turned off the feeding yet again for the night, and will start it up once more tomorrow morning.

And the painted ponies go up and down.

One thing I am thankful for during this entire process is the support of friends, family and church. Without you around we would've gone off the deep end long ago. As it is, there are friends supporting us from all over the world. For this I am truly thankful. Without calls, emails, and instant messaging - not to mention personal visits - this quivering blob of raw emotions would've ended up in a rocking chair somewhere mumbling incoherently. As it is, I know Sis and I not only have support, but prayers and wonderful advice from all of you.

Not to mention some killer sangria. My friend Yago and I are conferring at the moment before I retire for the night. And yes, I offered to share with Sis.

All that to say you all are appreciated. Thank you from the bottom of my heart for reading and caring.

You've been the hugs I need from the arms of the Father.

Thank you.

Same Day, Different Date

There's an old gag I think the Three Stooges used to do where one of them says, "Slowly I turn, step by step, inch by inch..." That's a little how I feel about how things are going with Mom. Very slowly, step by step, inch by inch.

It's not an easy process to go through, because every day it seems we grieve, but not as much as we will when she's not here. We cry, but not as much as we will when she's gone. But this type of grieving never ends because it never has a chance to really start. It's only after she's gone that we can begin to pick up the pieces of our lives.

Please don't misunderstand me. I know God has a plan for her and He will decide when her life on earth should end. I don't want her to go a second before that time. What I'm saying is that I'm tired. Tired of watching her hurt without being able to help her in any way but giving her pain meds. Tired of watching and listening to the delusions she goes through without being able to reason with her. Tired of seeing her continue to go through so much mental and physical pain and not being able to do anything about it.

God knows what He's doing. I'm confident of that. I just wish that I could see with His eyes sometimes instead of mine so things would make more sense.

Close To My Heart

I spent the night in my old room last night. Of course, the bed has changed, the decorations have changed, and boy howdy, have I ever changed. It's a lot different from when I left here thirty-three years ago.

What hasn't changed much is the bathroom. It still has that blue tub, blue sink and blue toilet that takes fifteen minutes to fill after a flush. The blue and white tiles are still on the wall. The linen cabinet is still there above the toilet. The one you have to stand on the toilet to open and close because it's so high.

The rooms in this house are far from large. I have no idea how we fit two twin beds, a nightstand, a huge dresser with a mirror and two growing girls into the room while we were growing up. The room can't be more than ten feet by ten feet if it's that.

Mom's room isn't much larger. Right now it's packed to the gills with everything you can imagine it would take to care for her. A hospital bed, tray table, oxygen machine, dresser, chest of drawers, rolling storage cabinet, chair and footstool, night table and lamp.

And there's one more thing.

The stand that holds her feeding pump.

Her feeds were taken down to 20 ccs per hour today. That's just a little over half an ounce of fluid, according to the syringe we used to measure. Yet even with that small amount going in, she still had residuals of 10 ccs this morning and 50 ccs at 5 p.m. and 6 p.m. We've been instructed to shut off the pump until the nurse comes to evaluate again in the morning. We realize she may say it's time to discontinue it altogether.

Yes, things are slowing down.

We've discontinued some of her medications - the ones that don't really matter anymore. She's still on the one for seizures and one for blood pressure as well as a couple of others.

But we're mostly just waiting now.

Her breathing has gone from regular breaths to skipping one or two in a row, then breathing again. Her delusions and pain are controlled. She's kept as comfortable as we can keep her. She knows beyond a doubt that we love her, and she us.

We both want to be here when she goes Home, but we realize she may have different ideas. And so for tonight, I'm going home. I'm going to sleep in my own bed and see my family. I will try to, as Sis said, make this the furthest thing from my mind.

But it will never be far from my heart.

What Really Matters

Tonight I am at Mom's while I write.

She's had a hard day, and I don't feel like leaving her just yet. I need to be here...and since I am able to do so, here I am.

The bath lady came today while Sis and I were gone. Charise helped her get Mom all clean and fresh, but then Mom started complaining of pain. Charise ended up giving her the full amount of pain medication available, but Mom was still frantic. She called the nurse in, and I showed up just after they'd given her the second dose of anti-hallucination medication to calm her down. She'd been calling out for people who weren't there and thinking she had to bake cakes for birthdays. Finally she was able to settle down and get rest.

The nurse now has us giving her the same medication on a regular schedule so that she doesn't get upset again. We did notice more delusions today when the medication was wearing off. We were moving her, and she told us to go and "get Daddy to help." I pretended to do that, but when "Daddy" didn't show up, she SHOUTED out his name and scared me to death!

Mom's color is alabaster white. Just when I think she can't get any more pale, I look at her and she's faded again. Each day I see her fail more and wonder how much more she can take. And each day God sees fit to keep her here.

Today at 5:15 p.m. her residuals were at 50 ccs. Since she's only being fed 30 ccs an hour, her residuals were way over what they should be. After we checked them and left the room, her feeding tube must have come apart from the extra pressure in her stomach and drained the contents onto her sheets. She also regurgitated some of it, so we turned off the pump until the nurse can check it out tomorrow morning.

Sis and I met at the funeral home to make final arrangements today at 9 a.m. It all seemed very cut and dried - almost as if we were planning a wedding instead of a funeral. We chose flowers, the casket, the vault, made arrangements for transportation, a tent, chairs, music. We set the time for the first visitation and the funeral, then decided to have a travel day between it and the second visitation and the graveside service.

And all the while I was thinking how none of it really mattered.

No one will care thirty or forty years from now if we did things one way or another. No one will care if there were certain flowers or songs at the funeral or if there even was a funeral. What will remain is the impact Mom had on the lives of those she touched, and those who touched others because of her.

What a wonderful legacy to leave.

What a wonderful Mom to have.

A Better Day

Mom was a talking machine today.

From the time I arrived until early afternoon she kept up a running conversation. Sometimes with me, sometimes with Charise, and sometimes with just herself. She seemed to have more energy today and a lot less pain. We didn't have to give her pain meds until this afternoon, and then only one dose. We were able to hold off on the big guns until later this evening.

Nurse Ratchet came in to check on Mom, and mention was made to her of the problem of speaking openly in front of Mom about dying. She explained that she tries to be honest with all of her patients about their conditions, but realized she'd made a big mistake when Mom started crying yesterday. When she found out Mom was upset for a good part of the day due to her visit and why, she said was very sorry and promised to only discuss Mom's condition away from her hearing. I was satisfied with her apology and decided to let her live without snatching her bald-headed.

At least for today.

The social worker also visited today. She said hello to Mom, but concentrated mostly on talking with me about how Sis and I were doing. I told her about Nurse Ratchet and our concerns about her treatment of Mom. Of course, I managed to turn on the waterworks and my nose got that familiar red glow that earned me the nickname "Rudolph" from my parents. Thankfully, I was able to regain some semblance of control before she left and toned down the glow before I went back in to see Mom again.

Mom worries about us. It especially worries her when she sees us crying. And even though she's been told she is dying, she forgets it from day to day. Therefor, the problem with Nurse Ratchet to her has now never happened. But let one of us come in there with tears, and she remembers it and worries about it and brings it up over and over again. And when she asks why someone was crying, we can't really come out and say, "Because you're dying, Mom, and they're upset about it." Because if we do that, it's as if we've told her for the first time all over again. So instead, we tell her it's because they don't like seeing her as sick as she is and they wish she was well again. Our own version of the truth that she can understand without being frightened of what's ahead.

Speaking of what's ahead, tomorrow will be a day I have never wanted to face and still do not want to face. Tomorrow Sis and I will be meeting with the funeral home to make arrangements for Mom for when the time comes.

We decided to do it now rather than wait until afterwards because we are still somewhat in control of our emotions and can think somewhat logically. We know what we want to some extent. All that remains is to get everything ready for the day we'll need it so we won't have to think about it then.

We know there will be a visitation and funeral service here, followed by travel to the state where she'll rest. Another visitation for the folks there will follow the next day with a graveside service. The details are what we'll work out tomorrow.

How glad I am that she won't be there for all of this! I feel such peace knowing she'll be safe in the arms of the Father when that time comes. No more of the suffering, pain or dementia she now has...just God alone.

And what better day could there be?

The Pain Of Nurse Ratchet

When I arrived at Mom's this afternoon things were not looking good.

Charise was worried because Mom was having chest pains. She'd given her some nitroglycerin, and I had her start the oxygen. We gave her another nitro tab, but Mom spit it out. The pain in her chest subsided, but in addition to that she was in pain in other areas. Her back, shoulder, and leg hurt. Sis had given her a small amount of pain meds before I got there, so I had Charise give her another small dose. When time went by and that didn't seem to help, I gave her the rest of what we were allowed to give her in that time period. Finally she was able to breathe easy.

Residuals at 5 p.m. were zero, but Mom kept waking up with stomach pain. We called out the Hospice nurse once again, but were unable to determine the cause of her pain. Thankfully, it subsided after we applied a heating pad.

I am convinced that nursing is 25% education and 75% common sense.

Another problem arose earlier today. While the Hospice nurse was there she spoke in front of Mom about how the feeding pump was going to have to be turned off permanently if the residuals remained high. Mom, even though she has been told she is dying, was extremely frightened to hear that and began to cry. Sis and Charise said it took most of the morning to calm her down. Sis also told me she had words with the nurse, who told her Mom didn't know what was being said because she was "delusional."

I think if I'd been there the nurse would have ended up in some pain, and it wouldn't have been the delusional kind. As it is, this is the second time she's had much less than a good bedside manner with Mom. I'm thinking the social worker needs to hear about this, but I'll speak with Sis about it first.

For now, I'm going to bed so that I can be there bright and early tomorrow. I want to see Mom when she's awake and aware, and evening doesn't seem to be the time for that.

Surreality

In all the time we've had to get used to this, it's still surreal in a way.

The nurse came in to visit Mom today and Sis told her about the 30 cc residual I got yesterday at noon. She's having us check the residual for the remainder of the day. At noon today it was 20 ccs. The next check will be at 5 p.m.

If the residuals remain high we'll be turning off Mom's feeding pump. Permanently.

As I write this I know this means Mom has just days to live. I know she won't be here for Thanksgiving or Christmas or Sis' or my birthday. But it all seems so unreal.

Today I sent out an email to her friends, asking them to end their visits to her. The time has come. Family is welcome any time, but Mom would not want to be seen by others as she is now. She is rarely awake, and when she is she's rarely lucid. She knows us, tells us she loves us and if she's in pain, and that's about the extent of our conversations.

I have spent the greater part of the day at home today. I'll be there with Mom after a doctor's appointment at 3 p.m. But just for this part of today I'm living my life. Just as if everything was normal and this was a vacation day. Just as if my world was the same, everyday world it used to be.

Just as if my mom wasn't dying.

Cherish Is The Word

Peace.

That's what I felt today as I cared for Mom.

Our regular caregiver, Charise, had the day off. Since it was my first day of leave from work I was more than ready to be there today. I finally felt as though I was where I needed to be.

Mom was awake and talking when I got there at 8 a.m. Sis was there as well for her usual morning visit. Shortly after I arrived Mom started feeling pain in her hip. Even though we changed her position it still hurt her, so we gave her some pain meds. Sis left for work and I settled in for the day.

The pain meds didn't last long, and Mom was uncomfortable again within an hour. I gave her more. She started in with hallucinations, so I also gave her the medication for that. Finally she was able to rest for a while.

The Hospice nurse came in to check on her today and told me she'd be out every day from now on. Apparently Mom has "declined" so much that it's time for them to check on her daily. When I checked her residuals at noon they were at 30 ccs - the same amount she's being fed each hour.

The bath aide came out and gave Mom a bath, and that pretty much did her in for the remainder of the day. She had one visitor, but couldn't seem to wake up enough to visit. However, when The Boy got there after school her eyes popped right open. Only a few words passed between them, but she knew he was there and that was all that mattered.

Sis came in to relieve me and I left to do normal, everyday things that I haven't had a chance to do the past few months. It's so hard to work all day and then care for someone all evening while still trying to maintain some sort of family life at home. Today I took The Boy shopping for some jeans and got his hair cut. I ate dinner with my entire family for the first time in three weeks.

I'm amazed at how I took those things for granted before. Just like I took for granted that Mom would be here and in good health another ten years.

Small things. Time, a hug, a pair of jeans, a dinner. They all matter in the end. Cherish it all.

Slowing Down

Mom's feedings have been changed from 50 ccs an hour to 30. Her output is slowing down, and her pain seems to be holding steady.

Today Son, DIL and Cutie left to go back to their home out of town. It was good for them to be able to see Mom this weekend. To say things that needed saying, to spend time with her. It was good for Mom to see them.

The weekend Hospice nurse came out today to check on Mom, and mentioned to me that she noticed a significant decline over the past week. I can't help but think we aren't looking at many days longer.

My heart hurts. I am so tired of crying, so tired of being sad all the time. I know God has a purpose in all of this, but honestly? At this point I'm hard pressed to find it.

A Day Of Few Words

Sis and I are taking over caring for Mom on the weekend shifts during the day. Sis is there from 10-3, and I'm there from 3-8. Then Maria, the Friday-Saturday night lady comes in, or Evonne, the Sunday-Thursday night lady comes in to relieve me. Charise is there during the day weekdays.

We finally have this down to a science. And we are blessed to have wonderful caregivers.

One of the things the caregiver is supposed to do with tube feeding is check residuals. What that means is every time Mom receives medicine or water through her feeding tube, the caregiver is supposed to first use a syringe to pull out the amount of residual food that's in her stomach to see if she's absorbing it the way she should. Then the caregiver gently pushes it back in before administering the water or meds. Since a shutdown of the digestive system is a sign of the beginning of the end, it's important to know so that feeds can be discontinued so the patient can be comfortable.

Tonight when I checked Mom's residuals the syringe filled completely. And I could have even pulled more out if the syringe had been bigger. I called the Hospice nurse and was instructed to wait half an hour and try again. Again, there was a full syringe. The nurse instructed me to hold her medications and flushes until 8 a.m., when we'd check it again. When I checked it two hours later, only a third of it was gone.

Mom was somewhat alert earlier today, but as the patch took more effect she began to sleep a lot. When she did open her eyes they looked glazed over, and she said very little. She communicated only by shaking her head and groaning. However, toward the end of the night as I was leaving she did tell me she loved me and said, "Sweet dreams..."

Every hour that passes makes me more certain that my decision to take FMLA was the right one.

Taking A Break

Yesterday was my last day at work for a while. God bless the people who thought up FMLA.

I arrived at Mom's a little after 2 p.m. The day was spent taking care of her needs, reading, and forcing Sis to make cookies until around 6:30 p.m. when Son, DIL and Cutie showed up.

And Mom was happy.

She'd been waiting for them all week, asking for them time after time. She kept saying how much she loved little Cutie and wanted to see her. Last night she got her wish.

After we visited a bit we sent out to Outback for dinner. I checked on Mom and asked her if she knew Cutie was there. She said she did because she could hear her laughing and playing outside her room. I asked if that disturbed her, and she said it didn't at all...she loved to hear the sound.

We have a new patch to help alleviate her pain. It gives her pain relief 24 hours a day rather than having us dose her every 6 hours with the liquid vicodin. The only problem is that it causes drowsiness. Along with the liquid oxycodone we have for her breakthrough pain and the Benedryl she takes to alleviate the itching from the oxycodone, she will be asleep most of the time.

She also had meds to help out with hallucinations she's been having, as well as a host of others. Sometimes it's hard to keep them all straight. Hopefully, I will be able to get enough rest to handle it this evening with no problem.

And so we move forward, day by day.

I'll Be There

Today something told me I needed to go see Mom before work this morning.

I got up uncharacteristically early and dressed, then drove over to her house about the time I'd normally be getting out of bed. The nighttime caregiver said she'd been unable to waken her this morning, but as soon as she heard my voice her eyes flew open.

But all was not well.

It was as if she was meeting me for the first time. She asked my name, then where I worked and what I did there. Then she told me her daughter worked in the same place and asked if I knew her. When I explained I WAS her daughter, she told me she thought I was the "other Chris" instead.

It broke my heart.

She repeated phrases and words over and over again as we know she does when her hemoglobin gets very low. When I gave her the usual set of teeth to put in she thought they were new and told me she had to wear them for a few days to get her gums used to them before she went back to the doctor to see how they fit.

She told me of people who were selling Chris' mother marijuana, and how they were making profit off of a woman who was hooked on drugs. She felt so sorry for the woman and so angry at the people who would do something like that. Then she switched gears and started worrying about how she was ever going to get all the leaves raked and bagged and out for the trash man before the deadline.

Her mind was going 90 mph in a 20 mph zone. And through that, there was pain.

I had her caregiver get her an oxycodone and I stayed with her until it took effect. As her eyes closed I made up my mind.

Beginning Monday I will be using the remaining three vacation days I have left. After that I will be on FMLA. I will be with Mom from here on out, for as long as it takes. It's important. I need to be there.

And I will be there.

Closer Still

Today was not a good day for Mom.

The pain she's been experiencing was an all-day battle today. Her caregiver, Charise, had to switch off between two different pain medications every two hours all day just to keep her somewhat comfortable. The nurse came in and switched her to a liquid vicodin which is supposed to be her longer lasting pain med, but she had breakthrough pain with that this evening. It can only be given every six hours. In between times we can give her oxycodone, up to to 10 mg every four hours.

If this regimen proves to be as ineffective as I think it will, we'll switch out to a patch that can be applied to her skin that contains a stronger drug. Right now we're unable to give her any time-released drugs since she can't swallow them and they can't be crushed and put through her feeding tube.

This afternoon I had no more come in than she started complaining of chest pains. This is something we've been expecting since her heart acts up every time her hemoglobin goes below a certain level. I had Charise get the oxygen started on her and I gave her a nitro tab and called Sis. In a few minutes she was better, but this is something that won't go away. I fully expect her to have more problems. Maybe tonight, maybe tomorrow, but I know they'll come. Her history is too clear.

Sis was there with me most of the evening. It's so hard for both of us to break away now, because every time we leave her we feel as though it may be the last time.

So we repeat those words of love over and over again - those words we want to be the last she hears from us as she goes to meet the Father. Of course she knows. Of course we know. But it always bears repeating. You can never hear "I love you" too many times. Ever.

And as we do our hearts let go of her physical body a little bit, while holding her closer still.

Winkin', Blinkin' and Noddin' Off

I got to the house yesterday around 3:30 p.m. Mom had just had a pain pill when I got there, and a visitor came shortly thereafter.

Carol is a good friend to Mom. She sits there and talks, lets Mom talk, or sleep or, as was the case yesterday, unbutton. She stayed for a while and sat with Mom while I caught up on the day from the caregiver, then we moved Mom to her bedroom.

We're concerned that if she spends too much time on the couch she could develop a bedsore on her tailbone since it bears most of her weight. The mattress is made for people in her condition, but it keeps her away from the central activity of the house - something she doesn't like. As it was, she was so sleepy it was evident she wasn't going to be partying with the rest of the house anymore that evening, so we put her to bed.

Ollie came in after that to speak with her for just a minute, then he and Carol left. The caregiver took off, and that left me in a silent house with Mom. I so wish I could be there during the day when she's more alert so that my visits would actually MEAN something to her. As it is, sometimes I feel as though all I am on these evenings is a glorified babysitter.

Yes, there are times when we talk, and those times are wonderful. But I'm never here to see the nurse except on weekends. I don't participate in her bathing, her visits from the Hospice team, the chaplain, the massage therapist. I'm always at work. I HAVE to be at work. And because of that, I feel left out. Like it's all going by me and I'm missing it.

If I take FMLA I end up having to pay the part of my health insurance my salary would normally pay to keep it in effect. Add to that the fact that I won't draw any salary during that time, and you can see the financial mess that would put us in.

On the other hand, I could be there to oversee Mom's care and enjoy her last days. She and I and Sis could talk. We could enjoy family time together. We could celebrate the winter birthdays she will likely not be around to celebrate.

It's a tough thing, this.

Maybe somehow we can find a way to swing it. I certainly hope so.

With A Side Of Gravy, Please

Mom has been hankerin' for some good, old-fashioned biscuits and sausage gravy.

When I got there yesterday afternoon, Sis told me she'd wanted some all day. "So," I asked, "Why didn't you make them?"

"I don't know how to make the gravy." Sis admitted.

This, my dear sister, is beyond me. To have grown up in a Southern household, having eaten gravy and biscuits for every other meal, and never learning how to cook it yourself? FOR SHAME!

Mom says to look in the Betty Crocker Cookbook she gave you for Christmas and make the white sauce, then throw in sausage. There, my work on earth is done.

So I made sausage gravy and biscuits for Mom last night. She ate half a biscuit (that's a form of bread to you readers across the pond) with about a link of breakfast sausage cut up in tiny pieces in the gravy before she started choking. We decided she'd had enough after that, but at least she got her taste of what she wanted.

Her BM production is back, and Sis was the lucky recipient of the first few. Predictably, they're black as tar, meaning she is still bleeding somewhere in her gastrointestinal region. And as she bleeds, her hemoglobin lowers. And as it lowers she gets weaker and starts showing more of the signs we're used to seeing when it's very low.

She hallucinates that my father is in the other room snoring. While I was feeding her the biscuits and gravy last night, she asked if I'd made enough for Dad. I told her Dad could fix his own, because this was especially for her. She sees mockingbirds that aren't there. She wants to change her clothes several times a day. And she's quite the pro at trying to get her way with us, too. With me, she gets mad. With Sis, she pleads.

The pain in her muscles is getting worse due to lack of oxygen - so much so that Sis had a hard time controlling it yesterday. Today the nurse is supposed to call with a round-the-clock regimen of pain pills so that she never gets to the point where it's uncontrollable again. We'll also have stronger medicine to give her for breakthrough pain. The last thing we want is for her to hurt.

My cousin Debbie is sending some pretty pink hospital gowns to make it easier to dress and undress her in bed. Since even sitting up is a major chore for her now those should come in very handy. And trust Debbie to think of PINK gowns.

And the search goes on for weekend caregiver(s). Son and his family will be up this weekend, so hopefully they can help out if we haven't found someone.

I promise to make them biscuits and gravy in return.

Nite O' Rest

Mom slept like a rock Saturday night.

I should know, because I was awake almost the whole night, even after taking a sleeping pill.

Sheesh.

The feeding pump decided to go belly-up around 2 a.m., and after a call to Hospice we decided it was best to unplug it and let it go until the morning, when a new one would be delivered. Before that it was beeping that insidious beep that tells you something is wrong every twenty minutes without fail.

And I said words. Words that my mother wouldn't repeat to my sister. The same words I said as I was emptying her catheter bag and spilled it all over the carpet.

Shame on me.

Sunday morning dawned bright, and Sis dawned with it. She mixed up the blueberry muffins and cooked up the bacon, and we three sat down to breakfast. Mom ate almost a whole muffin and a few pieces of bacon with no problems.

Honestly, that's all I remember about the morning, because I was just about toast by that time. I do remember getting into bed, but nothing else until around 9 p.m., when I got up to eat and go back to bed.

I am a sorry lot.

Sis and I have noticed Mom is getting weaker. Saturday night when I was changing her into her jammies, it took both me and Hubster to hold her up long enough to get one set off and another on. Sis told me today that Mom isn't assisting with her good leg during transfers anymore - it just buckles under her.

It's been seven days since we've seen a BM. The doctor started her on Senna Saturday night. She's had three doses so far with no results. I told my cousin it's sort of like Russian Roulette... which caregiver will get the prize???

Speaking of cousins, another came to visit this weekend. Debbie and her husband Kenny came up for the day, but got away without us taking any pictures. They're a sneaky bunch. Mom loved seeing them. She always says that she wishes her family didn't live so far away.

Again Chopped, and me, Liver, took no umbrage whatsoever.

So the search continues for a weekend caregiver. If you are in the Kansas City area and know of someone who has used someone or heard of someone who has a great-aunt that heard of a third cousin who used someone and you have their phone number, please email me. I'd be most grateful.

To Sleep, Perchance To Wake Up

Tonight I am spending the night with Mom.

Her weekend caregiver, Marie, decided to quit after spending one night with her. She decided it was "too strenuous" for her, being as she had to transfer Mom from the bed to the wheelchair to the couch and back again. We paid her off when she came back to get her things.

Because she did it by telephone during the time I was giving her a break to "do a few errands."

So now Sis and I are the caregivers until we can find someone who can handle Monday during the day for us. Only we've gone through the entire list a couple of times, put an ad on the bulletin board at work, and pretty much exhausted the avenues we have.

Next up, we plan to email Mom's friends to see if anyone knows anyone who has hired a caregiver they can recommend. I'll check with other Hospices to see if they'll release their valued lists. We can also put up ads in hospitals and nursing homes around.

In the meantime my back is yelping in protest. Mom is showing no confidence whatsoever that I'll actually wake up tonight if she needs me, and Sis had to find a bell to attach to Mom's bed so that she could ring it to wake me up. I'm afraid to take a sleeping pill for fear the prediction will come true, although it hasn't been a problem in the past when I've stayed with her in the hospital. Most of the time I just played possum when people came in the room, hoping they'd leave me alone to sleep. But when Mom needed me, I was up and at 'em.

Sorry, Sis. I didn't want you to find out this way.

Anyway, I'm hunkered in for the night. Sis will be here bright and early in the morning, which means I can't play possum since I really should get dressed before she gets here. Then it will be home to my nice, warm, cozy bed for the day.

For now, Mom is sleeping like a baby. Let's hope I can do the same.

The Phantom And The Fashionista

Today was a bit of a challenge.

Wondergirl was off today due to a previous commitment, so I called another caregiver in as a temp to cover for her. We arranged for her to meet Sis at 8 a.m. to go over all the things that needed learning before she could be left on her own.

Then, on the way to work this morning, I received a phone call from Sis. No caregiver had shown up. I tried to call her, but no one answered and her phone was not taking messages. I called the person who had recommended both Wondergirl and this person to find out if she knew anything about where the phantom caregiver was, but got her recorder.

This was not good. The day was not starting well at all. Thank goodness I had already stopped at Starbuck's for coffee, or the morning might have been totally lost.

I called Sis and explained the situation. She agreed to stay with Mom until I could get there at around 1 p.m. since she also had to work today. I took half of a sick day, and we were in business.

On the way there I stopped and picked up chicken livers for Mom, sampling a couple on the way there to make sure they were fresh and of good quality. Mom is very picky about her chicken livers. Sis said Mom hadn't been able to eat anything for breakfast since she kept choking, but she seemed to handle small pieces of the chicken livers well. She ate about six of them before she said she was full.

Sis also told me she'd been having a struggle with Mom over her clothing today. Mom got dressed then wanted to change clothes a few times during the morning. That wouldn't be so bad if it wasn't such a struggle to move her, much less dress her. And Mom isn't the type to just let things go if you explain that it can't be done right then. She wants things done NOW. Things take on an exaggerated importance to her, and she doesn't stop talking about what she wants until she gets it - at least in the clothing department.

So Sis was understandably edgy when I got there today. Little did I know what was in store for me.

Mom decided it would be good to go to bed after she ate, so I loaded her up in the wheelchair and took her in the bedroom. After I got her settled in bed she started in.

"I want to take this robe off."

"But Mom, you don't have anything on under it."

"Yes I do. I have pajamas on."

"Nope. Just bare skin. Nekkid, bare skin."

"What's the matter with you?? Can't you see these pajamas???"

And so it went. She getting more and more mad because I wouldn't let her lie in bed with only her birthday suit on, me tearing my hair out because the empress had no clothes. Thankfully, the doorbell rang. It was one of Mom's best friends, come to visit.

Zora stayed for over an hour, God bless her. I don't know what she found to talk about in all that time, but talk she did. And as she was getting ready to leave, the Nekkid Talk started up again. Only this time I had reinforcements.

"Mom, you don't have any pajamas on under that robe."

"Yes I do!"

"No, you don't. And if you don't believe ME, let's ask Zora."

We asked Zora, and she confirmed the naked part. So that made it true. Gee, and here I was having so much fun lying to Mom about being naked. I'm so glad Zora could come along and tell her the TRUTH.

Sheesh.

After Zora left Mom started in on another kick. Now she wanted to change into another outfit. I asked her why, and she told me she had Bunco tonight and had to get dressed because Roberta would be picking her up soon. I explained that Bunco had been cancelled because tonight was Halloween and the girls wanted to be home to hand out candy to their grandchildren when they came over. Mom wasn't buying it, so we called Zora, who was home by that time. Zora talked to Mom and confirmed it, but unlike before, Mom didn't believe her.

I was about to be sunk.

I must have told her the same story twenty times, but she kept coming back with wanting to get dressed for Bunco. Finally I decided to compromise. I told her we'd put her Halloween sweatshirt on and wait to put the pants on until later. She agreed to do that, then complained that there were straight pins sticking her from the sweatshirt.

By then I was completely bald from pulling my hair out by the roots.

Her knee was hurting pretty badly about that time, so I gave her some pain medicine that helped her rest for a while. We both needed her to rest.

Have I mentioned lately that caregivers should be paid more?

All That Matters

Our current daytime caregiver, Wondergirl, has to leave at 4:45 p.m. for the next week or so to get to her second job. So for those few hours we're left alone with Mom.

Mostly I like to stay with her because I haven't seen her all day. Sis has usually been in and out - lately mostly in - so I enjoy having my time with her.

Last night we talked. She was lucid, and it was a very sweet time. We talked about how long she'd been ill, and she knew it was over four months. We talked about Dad and his visit. We talked about the love we had, me for her, and she for the entire family. She spoke of her appreciation for all we've done for her since the stroke. She thanked me, and through me, Sis, for taking such good care of her.

Somehow that makes me uncomfortable. She shouldn't have to thank us for doing what we do out of love for her. She is so worth every minute of time we put into this, every single one. To think that she has to thank us for our time and help when that's what she's given so freely to us all our lives seems ludicrous to me.

I told her she never had to thank us...never had to tell us we were appreciated. I told her we did it because of our love for her. Her answer was that she WANTED to thank us, because she wanted us to know that what we did was important to her. That it mattered. That she loved us.

As if we could ever forget.

Her whole life has been dedicated to loving us in one way or another. Yes, she drove me crazy at times. I did the same to her. Yes, we fought at times. But we always made up. No, our lives together have not always been a bed of roses.

But love is the one constant throughout it all. The love has always, always been there.

And in the end, that's all that matters.

Out-Of-Town Guests And A Couple Of New Faces

My cousin Jim and his wife Anna came to visit Mom yesterday. They got in late the night before after driving what Google Maps says is at least an almost eleven hour trip, and that's not counting traffic. They stayed the day with Mom, then left shortly after I got there for the trip home. Mom slept a good deal of the time they were there according to Sis, but she loved it that they came. She even refused to be moved to her bed, opting to stay on the couch all day so that she could be a part of things and visit when she was awake.

It was a good day for her.

Other friends also came to visit. My father even made an appearance.

During this, a sweet girl showed up for an interview. Her name is Charise, and she just graduated from CNA school last year. She is bright, friendly and caring, and we hired her on the spot to take over the day shift with Mom. She started this morning.

To let you know how much we like her, Sis left her with Mom and went grocery shopping. As she left, she overheard Charise talking to Mom via the baby monitors we have set up. Charise was offering to set Mom's hair in rollers after her bath and shampoo today.

I think I'm in love, and Sis thinks we should adopt her.

She wants to read to Mom. She wants to find activities Mom can do. She wants Mom to be able to look forward to the days she has left rather than waiting out her death. She gets along like gangbusters with the nighttime caregiver, and she understands the meds and the feeding tube.

We are blessed.

In other news, we also hired a weekend caregiver. She'll be with Mom Friday evening through Sunday at 8 p.m. We're hoping Marie works out as well as Charise. She has a lot of experience and has worked in the field for many years.

As you can tell from the photo above, Mom's hemoglobin is very low. She has no energy at all, and even when she wakes up from a nap she complains of being tired. It was difficult to get her from the couch to her bed last night because she dreaded what it would take out of her for her to move.

This morning she's had a bath and is having Cream of Wheat for breakfast along with her tube feeding. The bath was another energy drain, but necessary.

Someday I hope God explains the reason some people had to go through such trials in dying. I hope He lets us in on why we had to go through such pain in losing those we loved. I hope He tells us why it couldn't have been a joyous, uplifting experience instead.

Because really, I could go for a little joyous and uplifting right now.

It All Started With The Chicken

Yesterday when I walked in the door at Mom's, she and Sis were making chicken salad. Mom makes the best chicken salad in the known world, and there will be no argument from the readers, thankyouverymuch.

Mom got tired sitting there in the wheelchair, so Sis and I wheeled her into the living room and laid her down on the couch to rest. She fell asleep almost immediately.

Back in the kitchen, Sis continued to mix up the chicken salad. "Here," she said. "Taste this and see what's missing." I tasted. There was something not there, but I couldn't quite tell what it was. I added more pepper, more salt. Sis tasted it again and declared it needed more salt. I told her I'd just salted it.

We both decided it was time to wake Mom and give her a taste. One tiny bite, and she told us there wasn't enough lemon juice in it. The missing piece was added and it was Mom's chicken salad again.

Mom knew. And when we told her that she was right it made her smile.

So what do we do when she's gone? How do we figure out all these things that she knows by rote? How do we compress all that knowledge and love into whatever time she has left? How do we go on without her?

That's what caused me to have a major meltdown last night. I cried from the time I kissed her goodnight until I went to bed. And it was the ugly cry, my friends. An ugly version of the ugly cry.

Oh, don't get me wrong. I know people go through this every day. Some people have it much worse than we do. Some never get the chance to say goodbye, much less to care for their parent. I am so grateful for this time, any time, I have with her.

But how do people go through all this pain and survive? Sometimes I feel like I've been grieving for Mom for the past five months. There are times when I can push the pain away and be OK, but that's getting harder and harder to do as Mom gets nearer and nearer to going Home.

Before that happens plans need to be made. We have to find the dress she wants to wear. We need to talk with her about her desires, her wishes, her plans. We know she wants to rest next to her parents and sisters in another state. We know how she wants her name to read on the headstone.

And most importantly, we know beyond a shadow of a doubt how much she loves us. That's one piece of knowledge she's given us over and over again.

And we'll carry it with us always.

Could I Have A Rim Shot, Please?

Sis: We really do need to put a calendar up for Mom's schedule. Didn't you say something about Hospice sending someone in to give her a bath tomorrow?

Me: No, that's Thursday.

Sis: Oh, that's right. And the chaplain is coming on Friday.

Me: Right.

Sis: So I guess you could say that cleanliness is next to godliness then, huh?

ba-da-bum.....

Roberta, Where Are You???

When Mom first had her stroke, a friend of hers named Roberta gave her a little carmel and white Beanie Baby-type dog to hold in her left hand to keep it from drawing up.

Mom promptly named it Roberta.

Somewhere along the way Roberta got lost. But wonder of wonders, a new Roberta took her place. And she begat another Roberta that was carmel and white with a black saddle, and yet another Roberta who was totally carmel.

So now we have Roberta #1, Roberta #2, and Roberta #3.

Only now Roberta #1 is lost again.

We have the rehab center searching for her, and if she's found one of us will drive up and get her. Mom can't be without all three, because Mom thinks there are actually four. It's concerning her greatly that now TWO Robertas are gone. If necessary, we may have to purchase the third Roberta #1 and perhaps even a fourth Roberta #1 just to ease Mom's mind.

In other news, Hospice had to place the dreaded "beaver tail" in Mom on Sunday. That's Mom's term for a catheter, something she despises. However, there were many fluids going into her and none coming out, so something had to be done.

And...

Today I had to let her daily caregiver go. Debbie was sweet to Mom, but wanted to do things her way instead of our way. She got there late both days, could never seem to get the hang of the medications (which really scared us), and the feeding tube seemed to be pretty much beyond her. And Mom didn't care for her.

She wanted to go home when I got there yesterday at 4 p.m. even though she was scheduled to be there until 7 p.m. Then she asked Sis if she could go home this morning for the day because she had cramps.

That pretty much clinched it for me. I asked Sis to tell her she was no longer needed, to pay her and wish her well. Sis, the stinker that she is, handed the phone to her and made ME fire her. Which I did in the sweetest, kindest way I knew how.

If there is such a thing.

So, we're looking again for a daytime caregiver. We have an interview set up for tonight, and if she doesn't show I'll be on the horn to more people and even agencies to get Mom covered. Because we really don't care how much it costs, just so long as she's well-taken care of and happy.

Oh, and has Roberta #1, too.

The Gift

This past weekend was hard.

I knew caregivers worked hard to tend to the needs of their clients, but I had no idea how hard.

I do now.

Mom has become noticeably weaker and more pale even since we moved her home. Yesterday, after a sleepless night on Saturday due to pain in her leg and foot, the doctor prescribed Oxycodone for her. I gave her 5 mg at 6:15 p.m., but that didn't touch her pain, so I gave her another 5 mg at 7 p.m. The caregiver reported that she was able to sleep comfortably through the night. I was so happy to hear that, because the one thing we want is for her to be pain-free in all of this.

The other thing we wanted is for her not to be afraid. Unfortunately, that isn't going to happen.

Mom overheard some of the Hospice people say the word "Hospice" while they were here. She didn't say anything to us, but told The Boy that people had better hurry up if they were going to see her "because it wasn't long before she'd be six feet under." After we heard that we decided it was time to shoot the elephant in the room that no one was talking about so that we could all handle things as best we could.

Sis and I went into her room and asked her if she knew what the word Hospice meant. She said she did. She said it was for people that didn't have long to live. We asked if she'd overheard anyone use that word, and she told us she had, and that it scared her.

We explained to her that Doc thought she probably had less than six months to live, so we thought it would be a good idea to bring her home rather than having her in a nursing home or rehab center or hospital. She agreed, and was glad we'd made that decision.

Then we asked her the hard question.

We wanted to know if she wanted us to pursue additional medical care if she needed another transfusion. Did she want to go back to the hospital again? Did she want any extraordinary measures taken to prolong her life?

She thought for a moment, and then told us no. No more hospitals. No more transfusions. No more pain. She was through. Enough was enough.

In that moment she gave us the greatest gift she could have ever given us. She made that decision, taking it off of our shoulders. Now when the time comes there will be no guilt, no wondering "What if?" We'll know it was her choice.

And what a gift it is!

Home Sweet Home

Mom is home.

And those words are bittersweet indeed.

It's so good to have her in the place where she belongs, for however long that is. I can't help but think she has some idea of what's going on, but it's like the proverbial elephant in the room that no one wants to talk about even though we know it's there.

With the social worker and the nurse coming in today and a slip that I tried to cover, she had to have heard the word Hospice at least ten times. Whether she put two and two together is anyone's guess, so we'll play along as if she hasn't. The next move is hers.

Sis and I had hoped to take her by Panera on the way home to celebrate the happy birthdays she keeps wishing us. But when the aide at the rehab center had trouble transfering her to the car because her good leg gave out we decided against it. We just don't have the skills to transfer her from the wheelchair to the car and back without risking bodily injury to both of us.

It was a sad realization.

After we arrived home, Hubster and The Boy assisted us as we got her into the wheelchair and carted her up the steps to her door. Once she was inside it was as if we had climbed Mount Olympus. Sis and I high-fived each other and set about unpacking the accumulation of almost five months.

The social worker came and left, and we settled Mom in her room for a nap. The Hospice nurse came and went over the feeding tube with us, along with schedules and medications. Sis left for a while to do some shopping and pick up prescriptions, and when she got back we got ambitious and transferred Mom to the couch in the living room so she could watch her beloved Hallmark channel - the one channel neither the hospital nor the rehab center have, and the one she's missed the most these past months.

She fell asleep on the couch, happy.

Sis left, and I stayed to wait for Evonne. She showed up early to meet Mom while she was still awake. Mom seemed to like her, and I was relieved. I went over all the medications, schedules, quirks, and everything else I could think of before I left, but just like a new mother, I'm worried about what will happen tonight.

Will she sleep through the night? Will she be afraid or confused when she wakes up at home? She didn't want me to leave tonight. Should I have stayed this first night?

Again, as always, I'm leaving it up to God to handle. He can take the night watch.

I'm going to bed.

Gotcha Covered

Last night Sis and I interviewed and hired a woman that we believe will take good care of Mom.

Her name is Evonne. During the day she's a mild-mannered grandmother of three who gets her grandchildren off the bus, fixes them dinner and helps with their homework before her single-mom daughter picks them up at 6:30 p.m. Immediately after that she will be winging her way to Mom's house to spend the entire night and part of the morning with her. She's working 7 p.m. to 7 a.m. or a little later, depending on who I can find today to fill in the daytime slot.

Evonne's friend decided she didn't want the job.

Yes, I know Mom's coming home TOMORROW. Yes, I know I need to have someone lined up to take care of her TOMORROW.

We're doing a lot of praying on this end, and thanking God it's the weekend and I can be the caregiver until Monday during the day if everything goes to heck in a handbasket.

Oh yes.

We pick Mom up from rehab tomorrow at 10 a.m., which means after All The Packing and All The Signing of All The Paperwork we should be home around noon. The Hospice nurse will meet us there, along with as much of the rest of the family as can be there. It may be a trick to get Mom up the hill to her door even with the wheelchair, so we'll need some good, strong men to help.

I just hope it doesn't rain.

After the interview last night we waited around for the equipment to be delivered. Finally, at 8:30 p.m. the truck showed up. He unloaded a hospital bed, side table, oxygen tank, oxygen machine, commode and wheelchair and set everything up. He explained how everything worked and told me if I had any questions to refer to the manual he left for me.

Thank goodness for the manual. I was so tired when he left I think I only absorbed about half of what he said. I still don't know where to plug in that commode....

So today I'm waiting for calls from two different people who may or may not want to take care of Mom. I'm praying God will provide the best person(s) for her, and I'm believing He will. And if all else fails, I'll take time off on the Family Leave Act and take care of her myself and let her pay me what she'd pay a caregiver so my family can continue to do silly things like have electricity and eat.

So any way it goes, Mom, we've got you covered.

Trying To Make Scents Of It All

Last night it was raining hard as I pulled into the driveway at Mom's house.

I had with me all the makings of a chili dinner. My plan was to make chili, strip the bed in her room, send The Boy downstairs for a hot shower after his last football game of the season, eat dinner, and have The Boy and Hubster move the bed out of her bedroom to make way for the hospital bed and other things that will be delivered tonight.

But it didn't quite work out that way. I didn't count on Hubster and his feelings in the whole matter.

You see, Mom was always one for having us over for dinner. She'd make a big pot of steak soup or a roast or pork chops or chicken pot pie or ...you name it, and then invite our family over to devour it. There would be more vegetables than you could shake a stick at, and more than likely a homemade pie.

Mom was always famous for her pies.

But since the stroke there haven't been any of those family meals at her house. Unless, of course, you count the family that comes in from out of town and fixes their own meals when they stay there.

So Hubster was sad. He just wanted to get the bed moved and go home. He didn't want to stay in the house any longer than necessary, because it just wasn't a home without her there.

I couldn't agree more.

We got the bed stripped and moved into another room until the rain let up and we could move it down to the basement. And I have to tell you, the first look I got at her bedroom without the bed in it made things a lot more real for me than they've been up until now.

We're actually doing this. She's coming home.

Have I changed my mind about it? No. Because I still believe it's what is best for Mom. What she would want, if she could logically make the choice. Will I change my mind later?

I hope not.

Tonight we'll be interviewing people who want to take care of Mom. We need someone there 'round-the-clock to make sure she's comfortable and safe, to be sure she gets turned and gets cleaned and gets her medications. We're hoping to find the best people we can for the job, because she deserves the best.

Before I left the house last night I took a moment and buried my head inside the clothes in her closet. Just to try to smell the smell that was Mom before the stroke, before all this hell began.

Of course, after four-and-a-half months, it was gone.

This growing up stuff isn't all it's cracked up to be.

Perhaps With Roller Skates

Yesterday was Mom's final transfusion. And, true to form, the hospital was a veritable study in ineptitude.

Mom arrived at 6:45 a.m. to be met by a very sleepy Sis who had her coffee in hand. They were taken up to Mom's room, an IV was started, and the wait began.

A FOUR-HOUR WAIT. For the first of two pints of blood. Sheesh.

And while all of this was going on, Mom was having the runs like crazy. Some of it was due to the tube feeding. Much of it was due to the internal bleeding. Sis said she couldn't help but think Mom was pooping out as much blood as she was getting added.

During one of the times Mom was being cleaned up Sis and I walked out of her room and had a discussion about her upcoming move home. Sis was having trouble with the whole letting-her-go rather than continuing to give her transfusion after transfusion. She asked me how I could do it. I explained to her that I considered it similar to a war. Every time we've gone into battle we've lost ground. Mom isn't getting better, but seems to be getting worse. The transfusions are more and more frequent, even though she isn't on any blood thinners. I think rather than making her miserable by fighting all the way to the bitter end, we just surrender and let her live out her time in relative happiness and peace in her own home.

Besides, I told her, we know we'll see Mom again. This isn't forever. And Sis' answer to that?

Through tears, "Perhaps with roller skates."

It was obvious the strain of it all had gotten to her.

"What?" I said, after I closed my mouth and stopped gaping at her.

"Perhaps with roller skates." she answered. "Mom could never have roller skates or learn to ride a bike because there were no paved roads or sidewalks where she grew up. So maybe when we get to Heaven and see her, she'll be wearing roller skates."

Maybe so, Sis. Maybe so.

One Last Time

Today Mom's hemoglobin came in at 6.0.

We have an appointment to meet with Hospice this afternoon at Mom's house at 4:30 p.m. Unfortunately, unless we transfuse her one more time, the likelihood of her making it home or being able to enjoy it once she gets there is very small.

The last time she received blood was the 14th of this month. Only a week ago.

So we decided to transfuse her one last time. One last fill-up, to give us time to get her home ready to receive her. Time to make all the arrangements necessary for 24-hour care, equipment, and scheduling.

I'll be sending out an email to her family and friends after we meet with Hospice to let them know how things will happen, to give them time to come in and visit with her. Time to make her remaining days as happy as they can be.

And I hope they will come, because those visits have become the joy of her life.

She told me yesterday that she wanted to get a big-screen television when she got home. I asked her why, and she told me that maybe people would come to the house to see her if she had something like that to draw them there.

As if she wasn't enough. As if people wouldn't want to come to see "just" her. She always did sell herself short.

So over the next few weeks we'll try to make her as comfortable and as happy as we can. No matter how much time it takes, no matter how much it costs.

Because she's more than enough. She deserves the best.

Do Not Pass Go, Do Not Collect $32,000

Mom has been unable to let go of the idea that she has won the lottery. She can't understand why we haven't been more excited about it, and why we haven't bothered to collect her winnings from the local SunFresh grocery store.

One reason would be the fact that the "ticket" she gave Sis to take to the store was, in actuality, her ID bracelet from the hospital.

We didn't want to lie to her or to tell her the truth and hurt her feelings, so we've just been telling her that we haven't had a chance to check things out yet. We hoped she'd just let it drop, but that hasn't been the case. She asks about it every day.

She'd decided that she was going to build a new house with the money, then pay for college educations for all five grandchildren, and split the remainder between Sis and me so that we could pay off all of our bills.

Quite a feat for $32,000. Especially after taxes.

So today when she brought it up I decided to break the news to her that the numbers didn't match on the ticket. There would be no prize.

She took it surprisingly well. She was a little down and dejected about it, yes, but we didn't dwell on it. We talked mostly about all the good things she's done for her grandchildren. How she spoiled them, how she loved on them, and how she didn't need to provide their education to them on a silver platter - that they needed to work for it to appreciate it more.

We also spoke about her going home for good. She has only about three weeks left in the rehab center that will be covered by Medicare and her tie-in insurance. However, since her hemoglobin was 8.3 both Thursday and Friday, there is a chance it has dropped further over the weekend. They'll be testing her hemoglobin again tomorrow, and if it's dropped much lower we need to get her home.

She told me today that she doesn't want the tube feedings anymore. We'll have to talk with Doc about that as well as the Hospice people. The feedings cause her to have the runs, which means she has to be cleaned up more frequently, which is humiliating for her. I flat out told her that if she didn't have the tube feedings she would likely die of starvation, and that didn't seem to phase her much at all.

She talked today about how much she misses her family. Not the family that's alive and well here around her, but the family that has already gone to be with the Lord. Her five sisters, her parents, the other people she loved and wants to see again.

I think she's winding down. Realizing, without admitting, that her time on earth could be short. Telling us in her own way that she's ready.

And that is somehow comforting for me to hear.

It Will Be Alright. It's Going To Get Better. This Won't Last Forever.

Yesterday I went to visit Mom for the first time since returning from Arkansas.

She was in bed and being fed through her tube when I went in, and she'd been crying. She told me she missed me so much while I was gone because she gets very lonely when no one is there with her. Even though she'd had more visitors in the time I'd been gone since she'd had when I was there.

And she wept even more.

Then she went through her litany of delusions. How Sis was sitting over there and wouldn't wake up no matter how loud she yelled. (Sis was not there.) How Dad wouldn't wake up either, even though he was next to her in the bed. (Obviously untrue.) How both her doctors had been in a car wreck and were in therapy with her yesterday. How she couldn't understand why we weren't more excited about winning the lottery and why we hadn't cashed in the ticket yet. How people who hadn't been there had been there, and about how much pain she was in.

Then I tried to talk to her about other things. I told her about my trip, about the funeral, the flowers, the music. When I started to talk to her about how my aunt's death hurt so very much, she started her litany over again.

I think it was then I realized that this person is no longer anything like the mother I knew and loved.

It's not that I don't love her still - I most definitely do. But the mother I knew would comfort me through her pain. And I think that's what I miss the most.

Mom telling me everything's going to be alright. Everything's going to get better. That this won't last forever.

I know, I know. I'm whining and I'm selfish about the whole thing. It should be all about Mom. But I've been depressed and teary-eyed the whole week, even at work. I won't lie - it's been very rough.

During one of her more lucid moments she looked at me and said, "I don't want to live like this. I can't do anything anymore. I can't cook, I can't play with the grandchildren, I can't drive, I can't walk, I can't even get out of bed by myself. I have to be cleaned up because I can't even use the bathroom by myself, and that's humiliating. I don't want to live this way."

And then she went back to the crazy.

Today Sis and I handled some banking issues for Mom, then went to see what was in her safety deposit box. There were the normal Certificates of Deposit, IRAs, annuities, birth certificates, marriage license, papers on the house, etc. But there was something else as well.

There were signed and addressed cards and gifts for the remaining three grandchildren who have not yet graduated from high school, waiting and ready for them. All three of them. One will graduate in May, one in 2010, and one in 2012.

And I cried again.

After the banking we went to her house and cleaned out the freezer. We split up everything as evenly as we could, leaving some of it for later. Even at that we both have enough food to feed our families for at least the next three months without ever leaving the house.

Even when she's disabled she's still providing for her family.

The canned goods will be next. We figure we can pretty much go at it week by week and get most of the house closed down except for what she needs while she's there. I have a call in to Hospice for a Monday meeting, and I'm sure we'll be talking with Doc again about what to expect and when.

Letting go is hard. It hurts your heart.

But it will be alright. It's going to get better. This won't last forever.

Losing Ground

Mom is still bleeding.

I've been out of town for a few days to attend the funeral of a dear aunt. Yesterday was my first day back. Since it was Thursday and Sis usually goes to see Mom on Thursdays at the rehab center, I did something I can't remember doing in a long, long time.

I went to the grocery store.

We were out of everything, and I didn't even get all we really needed, but it will tide us over for a while. That and the dinners the church and good friends have been so kind to provide us should keep us eating.

When I got back there was a message from Sis. Mom's blood count has gone down from over 9 when she was released from the hospital Tuesday to just over 8 now. If she keeps going at this rate, she'll bleed out in less than two weeks.

I'm not ready. I can't handle that now. I need time. Time to adjust to the reality of what's happening. Time to get things ready for her at home. Time to talk to Hospice and to accept the inevitability of it all.

It's too soon.

Not that there would ever be a good time. But now isn't it.

So we'll wait a while until things can settle down. We'll get Hospice involved, and we'll keep her comfortable while we get the house ready. If she gets to the point where she needs it, we'll give her another transfusion. We'll talk to our pastors and get their opinion.

And eventually, we'll let her go.

Enough Is Enough

Today Sis and I spoke with Doc about letting Mom come home. Not just for a visit, but permanently.

But Doc doesn't seem ready to give up the fight yet.

He realizes she can no longer be on blood thinners. He also realizes that without blood thinners she will have clots. And so he talked us and Mom into putting a filter into her vein to stop the clot(s) from her leg from reaching her lungs.

Another procedure that she would not want if she were in her right mind. Another procedure that will cause more pain.

Yes, I should have spoken up and told him no. I should have said "ENOUGH!" But I didn't. And so she will have the procedure today, because she agreed to it.

But the blood thinners will stop. Permanently.

Mom will return to the rehab center for a period of time while we make arrangements with Hospice for her to come home. We have no idea how long she will last once she does come home, but we know this: She will be where she wants to be, with the people around her she loves and who love her.

We'll be meeting with Hospice either today or later this week to make arrangements. Prayers for peace over us as we deal with our decision and peace for Mom would be appreciated.

Because enough is enough.

A Short-Lived Stay

Mom is back in the hospital again.

I know, you thought she was just discharged last Thursday. She was. However, she was discharged on Coumadin. And we all know what that means.

An ambulance brought her back today due to bright red blood mixed with her stool. She was bleeding out again from her intestinal tract. Even with a transfusion just before she left the hospital on Thursday, her hemoglobin was at 7 today.

They gave her more blood and topped it off with plasma. She's been in pain due to her legs and feet cramping up. Her dementia is still bad - worse than it's been. They stopped the Coumadin in order to stop the bleeding.

For now.

Sis and I have some difficult decisions to make in the next few days.

I'm praying we're up to the task.

Meanwhile, Back At The Ranch...

Mom is now back at the rehab center.

She had a booster of packed red blood cells before she left the hospital, and hopefully that will last a while. Her hemoglobin was down to 8.7 when they decided to give this to her. She looks tired. She's worn out and weak from the hospital stay.

Until the nutritionist at the rehab center comes in to evaluate her she will be on 24-hour tube feedings. They hope to give bolus feedings during the day so that she'll be able to participate in rehab, then put her back on the feeding pump at night for extra nutrition. In the meantime, the speech therapist will be working with her in an attempt to regain her capability to swallow.

Now we have to figure out what the next step is. Do we leave her on the blood thinners knowing she'll bleed out and have to have transfusions time after time, or do we stop the blood thinners and risk another huge clot? Where do we put her when her now 38 days run out?

These are all questions Sis and I will have to discuss with Mom. We need for this whole situation to be settled...not so up in the air all the time. We need to know what to expect and when. We need to know Mom is getting the best care possible, wherever that is.

And we hope the answers come soon.

And So We Begin Again

Mom was supposed to get out of the hospital today.

I say "supposed to" because there was another glitch. Her blood count is down to a little over 8 from over 10 yesterday.

Sigh.

What this means is she'll likely have to have another transfusion in the next day or so. Her leg is still bothering her and is very swollen, so we know the clot hasn't dissolved. Not that we'd expect it to in such a short time.

It would just be nice if she could catch a break once in a while.

You Can't Win If You Don't Play

Mom has apparently won the lottery.

She told us so today.

She said she's been praying and praying for a way to pay for college for all five grandchildren, and today when she checked her ticket against the numbers in the newspaper, it happened. She couldn't believe it, so she checked it twice.

She won $32,000. Enough to pay for all the grandchildren's education, she said.

I only wish it was true.

Not only that she won the lottery, but that $32,000 would pay for all five to go all the way through school. She even wanted to pay off DIL's medical school bills, but didn't think she had enough for that.

Mom is a giver, and that's for certain. Even in her present state she thinks of everyone but herself. Even in her dreams.

She'll be released from the hospital tomorrow after almost eleven days' stay this time. Her feeding is going well and her pain is under control. The clot is still a danger, but she'll be on blood thinners until it doesn't pose such a threat. We can only hope and pray she doesn't have to come back to the hospital for more transfusions until the clot is history, but we know that's unlikely.

We're not exactly sure how much more time she has in rehab before she has to go on Medicare's Part B. We'll have to check with the rehab center to see. Right now we don't have a place for her other than the nursing home attached to the rehab center. While that is an option, it is also at least a twenty minute drive. That may not seem like it's so far away, but it really gets tiresome day after day.

I'll be looking at another place closer to home this week. I spoke with the social worker there today, and now all I have to do is find the time to go there. Sis is more inclined to leave Mom where she is so that she can work with the same doctors and therapists she's become used to. However, winter is coming. I'd feel better if we had Mom closer to home. It's something we need to decide together soon.

The main thing is that Mom is very well cared for and as happy as she can be in the situation and place where she lives. We can work out all the rest of it as it comes.

Watching And Waiting

I've been worried about Mom all day.

The tube is working well and they have begun feeding her through it, but she's having a hard time tolerating the pain she feels from the procedure to put it in. Since her pain tolerance is zero, even a little puts her over the top. The nurses have been good about pain meds, but understandably don't want to use them too much. Morphine can cause constipation, yet without it her blood pressure rises due to the pain. It's a fine line to walk.

Possibly because of the morphine or the dilantin or a host of other reasons, Mom has been having problems with strange dreams. She wakes up in the middle of them, thinking they're real. She's also having problems with repeating the same thing over and over and over. It's as if she gets stuck on a thought, like a scratch on a record, and can't get past it.

That last remark was for those of you who actually REMEMBER records and record players.

She also has a place on her lip that has caused her whole lower lip to swell to about twice the normal size. It was thought she might be allergic to some medication she was getting, so the doctor prescribed Benedryl for her.

It was a gift from God.

It did nothing for the swelling, but it knocked her out enough to where she could sleep. When we left at 10 p.m. she was out like a light, and had been for several hours.

Why were we there so late? Because we had other news today as well.

Mom has a blood clot.

Her left leg has been swelling abnormally. We mentioned it to the nurses a couple of times, but they always said it was because she wasn't getting good circulation due to being in bed all the time. They put the "squeezy thingies" on her legs to encourage circulation and left it at that. Yesterday I brought it to their attention again because the squeezy thingies were so tight on her left leg. It had swollen more. They removed the squeezy thingies to let her legs rest for a while, and put them back on later.

Then today the physical therapist came in. She was moving Mom's legs to keep them from stiffening up, and commented on the size of her left leg. She got the nurse to look at it and they both poked around it for a while. The nurse called Doc, who ordered a sonogram of the leg, and the clot was found.

It's in her thigh, and it's huge. It's long. Sis was there for the sonogram and told me it reached at least half of her thigh and maybe more. She now has to have blood thinners to let the blood in her leg circulate, which brings us full circle. If she has blood thinners she has gastric bleeds. If she doesn't, she has clots. Clots are life-threatening. Bleeding is life-threatening.

In other words, we're damned if we do and damned if we don't.

In the meantime, there's always a chance that part of the clot will break off and cause even more problems. So because I was worried, I went back to the hospital around 5:30 p.m., and Sis and I stayed there together until 10 p.m.

We trust that she's in His care, no matter what happens.

He can take the night watch. We'll be back tomorrow.

The IV League

Oh yes.

The title is courtesy of Sis, because that's what she spouted when she found out Mom now has two new IVs in her right arm rather than one in each arm. I was leaning toward "Because God Made The IV Line" (think old songs) but I'll save that one for later.

Because I'm sure we'll need it.

Mom's feeding tube is now in place. They are testing it today with water, and will begin feedings tomorrow, gradually building up the amount she gets hour by hour. Unfortunately, the GI department didn't call her down to have it put in until noon, then we had to wait even longer for them to take her back and actually do the procedure. I offered to stay today since Sis has missed more work than I have, so she wasn't there when we got back to the room around 3 p.m. She came by after work, after I'd already seen and gotten used to the look of the site and the tube.

When Sis first got a look at it, she said something akin to "Gee Mom, it looks like you're inflatable now..."

We were having one of those days.

Sis and I laugh. It's really what we do best together, other than take care of Mom. And we laugh at inside jokes, at quirks we both have, and with Mom. She's where we got our sense of humor.

As the nurse was working with Mom and listening to us giggle tonight, she told us how close she is with her sister. How they finish each other's sentences, how they are each other's best friend, how they can blow off steam with each other, how they love to do things together. Sis and I looked at each other and laughed some more.

"Yeah, NOT us at ALL," I said.

Thankfully, the nurse didn't take offense or order enemas for both of us. Although, come to think of it, it might have been funnier if she had.

She didn't realize how very different the two of us are. I like to think she couldn't see the differences because we work so well TOGETHER taking care of Mom. We both have the same heart in that regard. We both love Mom and want the best possible for her in all things.

And in my book, that makes us IV League as well.

A Hard Day's Night

Mom had a hard time sleeping last night because they chose the nighttime to run potassium again. If you've ever had potassium through an IV or know anyone who has, you know it stings like crazy the whole time it's going in, unless it goes in a PICC line. Since Mom doesn't have one of those this time, she got very little rest.

And since she got very little rest, she made up for it today.

She had a bad headache today along with various other aches, so the nurse was kind enough to give her some pain medicine. It worked so well that she slept until around 5 p.m., then woke up with the headache still there. More pain meds, and she was out until after I left the hospital.

Since she did not have the feeding tube placed today it will be placed early tomorrow morning. At least we hope it will be early, so Sis and I can see her through it before we go to work and then check in on her later. That will mean showing up at the crack of dawn to wait to be called.

Fun times.

At least Mom will be able to get nutrition instead of the PPN she's getting now. The poor woman has an IV in each arm, and it's hard for her to do much of anything without getting tangled up in tubing.

The neurologist said it may be a day or so before they try it out for medications and another day before they try it out for feeding. It will depend on what the GI doctor says. We're hoping everything will be smooth sailing and there will be no worries.

It would be a nice change of pace.

Down The Tube

Mom is having a feeding tube inserted tomorrow.

Doc talked with her about it, but she didn't seem too keen on the idea. Then the GI doctor came in while one of her friends was there visiting. He explained the procedure and told her it would not be as painful as the carotid surgery was. When she still balked at the idea, her friend stepped in and told her she had to do it because she'd starve to death otherwise.

So Mom agreed. It was as simple as that.

The neurologist stopped in this afternoon while Sis and I were both there. The MRI came back and we were extremely happy to hear that she did NOT suffer her second stroke. It seems the problems she's been having with staying awake are due to the anti-seizure medication, which was too highly concentrated in her body. The medication was stopped for today and they will do another test tomorrow to see what the level is before they begin it again at a lower dosage. He also seemed confident that she would be able to re-learn how to swallow, and that the feeding tube would be temporary.

I wish I was that confident.

The medication is also one of the reasons she has been so wacky lately, other than the fact that she's just getting over two seizures. The dementia is much worse than before. Today she was worried about not having dinner ready for her Bunco group tonight, and had to be told over and over that it was being taken care of by someone else. She had bread in the oven that needed taking out. She cooked a roast beef dinner, but didn't have time to make hot rolls. And she was bound and determined that there was a pair of scissors in her bed that I could use to cut off her identification wristband.

She is very restless, pulling her covers off almost as soon as they're straightened. Then she complains she's cold, so the covers are put on again. Then she complains she's hot, so off they come. It's an endless cycle. She wants things moved to the closet, then wants them back on the shelf. She keeps trying to remove the protective padding over the rails on her bed until she is told why it's there. Then she leaves it alone until the next round.

My hopes are not high that this part will improve. We've been disappointed in this area too many times for me to hope again, so I'll just accept what comes along.

Hi, My Name Is Laura, And This Is My Other Sister Laura

It was not a good day or evening at the hospital.

Sis was with Mom most of the day while I was at work. Mom, however, was still in the mostly-asleep-only-sometimes-awake mode she's been in the past couple of days. She's not talking in her sleep as much, but she is still very, very confused.

I walked in tonight to take over from Sis and told Mom I loved her as I bent to give her a kiss. She grabbed my hand and in a very plain voice, said, "I love you, too, Laura."

It hit me off-guard, that one did. Somehow I always thought she'd know ME, her firstborn. ME, the one she could always count on for help. ME, the one who would fight her battles with utility companies and slay her dragons. After all, it was ME.

Not Laura. I don't even know who Laura is. Neither does she.

And then she turned to Sis. I asked her who Sis was, and she answered the same way, "Laura." Apparently Sis and I are now twins in that we're both named Laura.

Sis went home after we spoke about doctors and such, and promised to come back up later so I could get home at a reasonable hour. After she left, the neurologist came in. I explained to him that Mom was asleep much of the time still, and her confusion seemed to be worse than it ever had. I told him about her talking in her sleep, the random thoughts out of nowhere, the fact that she didn't recognize me or Sis earlier. He said it was very unusual for the anti-seizure medication to cause those symptoms this far out from the seizure, and he suspected there might have been another stroke.

Just what we needed to hear.

He ordered an MRI, but it hadn't been done as of the time I left. If it is another stroke, plans for her recovery will change. As of today she failed another swallow test as well as a video swallow test, so we know that there will be long-term consequences from that. Whether she will have to have a feeding tube inserted or whether she will be able to learn to swallow again is up in the air. With her mental status as it is now, learning to swallow again is unlikely.

In the meantime, the hunt for nursing homes is on again. I made another visit to the one I was at first impressed with over the weekend, and found it to be lacking in a big way. Another I will look at is full and has a waiting list. The one attached to the rehab center will likely be where she goes following this hospital stay, as we don't think she'll qualify for rehab anymore.

My mother, the person I knew and loved before the stroke, would rather die than be the person she is today. My mother, the person I know and love today, still wants to live.

How do I reconcile the two?

Back To The ER, Back To The ER, Back To The ER Again

Yesterday I received a call at 6:30 a.m. It was the rehab center.

Mom had suffered a seizure while they were getting her dressed for breakfast. They'd called an ambulance and were taking her to the hospital. I called Sis, got dressed and headed to the ER.

It's become a too familiar place for us to be.

Half an hour later the ambulance showed up. We met it, assured Mom we were there and that we loved her, and left the experts to their work.

But things were different this time.

It took a much longer time than usual for anyone to let us know what was going on, and when they did they told us the doctor would meet us in the waiting room. That's never happened before. We've always met the doctor back in the ER after the initial look-over. We were worried.

Eventually the doctor came out and spoke with us. It seemed Mom had suffered another seizure when she arrived at the ER, and they were getting her stabilized. It would be a few more minutes before we were allowed back.

When we were finally allowed to see her, she had been given anti-seizure drugs and was completely out of it. She remained that way for the rest of the day, except for telling us she hurt in various places. Her legs kept cramping up, and her back hurt most of the day. The doctor prescribed morphine for her pain and we let her sleep.

Today she was more awake. They found her potassium was extremely low, so she was started on that. They ran tests, including an EEG and a swallow test. She failed the swallow test miserably, choking on applesauce. She is not allowed to have anything by mouth until she is more alert and can be tested again, hopefully with better results.

In the meantime, her blood pressure is very high, tonight reading at 174/104. Scary numbers. She's doing a lot of talking in her sleep about strange things. I don't know if the drugs are causing it or if it's something else, but I really don't know anyone named Cassandra and I haven't been invited to her coming-out party, so I don't believe I have to buy her a gift even if Mom thinks so. And I think we can wait to buy the Easter baskets until closer to Easter.

So we're back at the hospital for an undetermined length of stay.

Last night was another Every So Often Bawl, and I don't mean we danced. Sis and I are getting to the point where a breakdown is almost a certainty, whether it's one like I had last night or one of the nervous breakdown variety. Mom is so precious to us, yet we hate to see this happen to her day after day, time after time.

We want Mom to be free of all this pain, all this seemingly unnecessary suffering she's going through. But God knows better than we do what is best, so we'll trust His judgement and keep on keeping on.

Room 413 And Lionel, Who Isn't A Train

Mom is back at the rehab center, safely ensconced in room 413. Room 413 is old hat to us. It's a private room they use for patients with communicable disease. In Mom's case, C Diff.

They've hired a new aide in our absence, one we know will do a wonderful job. His name is Lionel, and he's the epitome of what you want an aide to be. He is polite, courteous and gentle, yet strong enough to handle Mom's weakness. He took care of her last night, her first night back.

When I arrived at the rehab center after work today I was greeted as I am almost every day nowadays by Mom. Not with "Hi! I'm so glad you're here!" or "Where've you been? I've been waiting for you all day!" but with "My butt hurts." And not once, but at least fifteen times before I suggested we go back to her room and put her to bed. It seemed to be all she could focus on.

So we had a talk. Because Sis and I have become extremely weary of the dead horse Mom beats over and over and over again.

I reminded her of all the migraines she used to have and how she never let out a peep. About the horrible cramps she had every month that she never complained about. And I told her she needed to come up with some of that strength now, to try to stop telling us so much about her bottom woes. I told her there was nothing on earth we could do to make it better for her, and hearing her constant moaning and repeating of how much her behind hurt was hurting us since we were so helpless to help her. I reminded her that when the aide came in to get her ready for bed he had cleaned her up and she hadn't complained at all, so I knew she could do it.

The nurses have told us that when we aren't there she does just fine. But let us show up, and the floodgates of complaining open and open wide. It's kind of like a little child playing one parent against the other in a way. Except in this case, Sis and I are up to here (lifting hand above head) with it.

Lionel caught on right away. Mom tried the complaining with him, but got nowhere. He asked her if all the complaining made her feel any better. She told him no, it didn't. So he asked her why she was still doing it.

He said she quit right after that.

God bless Lionel. He can run on my track any time.

Counting Chickens Is Not Such A Good Idea

Mom was NOT released from the hospital today. Instead, she was given two more pints of blood.

It seems as though her hemoglobin dropped to 8.5. The same hemoglobin that supposedly was remaining stable at over 10. Which meant that even though all the blood thinners had been stopped, she was still bleeding internally.

Sis and I determined we were going to have to talk her into having the colonoscopy. The previous test they'd done showed the bleeding was coming from somewhere below her ribcage. She was refusing the colonoscopy due to the prep and all of the cleanup her already raw bottom would have to take. Then a helpful nurse suggested something called a rectal tube.

Supposedly this tube could be inserted to catch the output and save Mom from the cleanup problems. While it might be a bit uncomfortable, it would keep her skin from further damage, and that's what she worried most about.

I reasoned with her. I explained we didn't want to have to keep taking her back to the hospital and exposing her to C Diff every other week if we didn't have to. I wheedled a little. I bargained. I cajoled. And I almost had her talked into it. Almost. She wanted Sis to weigh in on it tomorrow morning before she made her final decision.

And then.

On the way home I called Sis to report the evening's happenings. I told her we were almost a shoe-in for the colonoscopy. And she told me something as well.

Mom's hemoglobin had gone up .6 points before they ever started the first pint of blood. Which meant she had stopped bleeding. Which meant all my cajoling was in vain.

While I was perturbed to have spent all that time talking Mom into something that wasn't going to happen, I couldn't have been happier. To think she might actually be free of the internal bleeding for the first time since the stroke is somewhat unbelievable. So unbelievable in fact, that I think I'll have to reserve judgment on that for a few weeks.

I'm from Missouri. So show me.

Mom was depressed and upset today. She's had it with all this and just wants to go home. I don't blame her one bit, and I truly wish she could do just that. Unfortunately, that may never happen again. She can't afford the round-the-clock care it would take, and neither can we.

In a perfect world, we'd buy a different house with a walk-out apartment on the lower level where Mom could feel like she had some independence. We'd have someone in while we were at work to keep her company and meet her needs, maybe even someone to live with her permanently in her little apartment. She could decorate it the way she wanted, have friends over, and do all the things she'd do in her own home, but with help just a few steps away.

But those are just dreams.

We're not counting those chickens now. Or probably ever.

So Long, Farewell

Mom is leaving the hospital tomorrow.

She is permanently off of the Plavix. The cardiologist and Doc have been talking, and both have decided that one aspirin a day is all she needs to keep her blood thin enough to guard against heart attack or stroke. Her hemoglobin has stayed above ten since the Plavix has been gone, so we know that was the culprit in the case of the internal bleeding. We're hoping the aspirin doesn't have to go as well.

The C Diff is another story.

It's evil.

Mom is a pooping machine, and that machine seems to be able to put out veritable mountains of product. And each and every of the many times a day it happens it's as if her bottom is being burned by acid - which it is, in a way. Until this clears up she will have to suffer through many, many times of being cleaned up, and each of those times is agony for her.

On a lighter note, she has discovered the wonders of morphine. After particularly grueling sessions of being cleaned up in the hospital she has asked for and gotten her pain relieved. Since she has a PICC line rather than a traditional IV, the nurses can push the morphine in fast without worrying if it hurts her or not. Mom loves the fact that it works right away and that it lets her sleep for a couple of hours.

My mother, the junkie. :>)

Seriously, if it makes her feel better I'm all for it. She's suffered enough for a lifetime these past months.

Sis and I talked today about her return to rehab and after. During this last stay we've had to face some hard facts. One is that Mom is never going to be able to live in assisted living. That was the hardest decision for me. I wanted so much more for her than living out her life in a nursing home. However, with her mental and physical limitations there is no way she would qualify to live in any assisted living center. Doc confirmed that today to Sis.

Today is the first time I've been able to say that out loud and accept it.

Another thing we discussed is the closing down of her house. It took me a while to get to the point where I was ready to clean out the freezer and the kitchen cabinets, but I'm there. Now that I'm there I'm ready to begin to tackle the rest of the house as well. Not closing it altogether, but deciding the price things should sell for, then purchasing what we want from the house before we sell the rest. Of course, the family heirlooms will be divided between us.

But we both aren't there yet. Sis is the one that's OK with cleaning out the cabinets and freezer, but she's not able to go further yet. And truth be told, when we get into the actual sorting through things I may not be there as much as I think I am now.

It's hard to let go of a lifetime of concrete objects and have them become mere memories. It's hard to let go of what was and embrace what is. It's such a cruel, painful thing to have to let go of not only the places and things you loved, but the person you knew and loved who made it all what it was.

It's just hard.

Not Today, But Maybe Tomorrow...Or Not

Mom is still in the hospital.

Doc did not call today. I overslept and called the hospital to find this out.

BAD DOC. SHAME ON YOU.

She has been removed from the Plavix, but still seems to be bleeding internally. What they know from yesterday's test is that it's somewhere from the ribcage down. The GI doc wants to do another colonoscopy, but we've been down this road before. Once she's taken off of the blood thinners, the bleeding stops and they can never find anything. And if they do find something and start her back on the Plavix again, who's to say it won't break through in some other place and have her back in the same situation all over again?

Frustration runs high.

In the end it's Mom's decision. She's pooping like a banshee on Ex-Lax overdose now due to the C Diff, so the only difference would be the cramping that goes along with the laxative and the inability to eat. However, she doesn't want to eat anything anyway because she doesn't want to poop.

Again, it's her call.

We'll be there to support her either way.

I Have Some Good News, And Some Bad News

Mom has C Diff again.

I'm thinking I hear a collective groan from the readership as I write this. Kind of like the groan we let out when we found out today that the test was positive. Blood in her stool and C Diff.

Same song, 1,345th verse.

Her heart rate has decreased since the transfusion, which is a good thing. They were also able to start her on Flagyl immediately for the C Diff rather than waiting a couple of weeks like they did last time. Another good thing. They did a test today with radioactive dye to try to tell where she was bleeding out, but we don't have the results of it back yet. Her congestion sounds better and the perturbing stories were gone. Again, good.

I spoke with Doc today and let him know that Sis and I would like her taken off of even the Plavix. If blood thinners are going to cause her to be going back and forth to the hospital every few days with GI bleeding, they aren't worth it. The quality of life Mom has now is almost none due to her constant hospitalizations. If we take her off of all blood thinners we risk her having a massive heart attack, yes, but at least she has a chance of LIVING the life she has left instead of living through it.

Amazingly, Doc seemed to see where we were coming from on this one. He'll see Mom in the morning again to see how her bleeding is, and then he promised to give me a call at home to let me in on the game plan. I may have to be awake at dawn thirty, but I don't have to get up and be dressed to talk.

And that's a good thing, too.

There Are Good Days, And Then There Was Today

Mom is bleeding internally again.

We know this because she's putting out black stool every hour and because her hemoglobin has dropped to 8. She's getting two more pints of blood by transfusion tonight.

She's also been coughing up some stuff, but the chest x-ray is clear as of tonight. However, her heart is another story. It's enlarged and beating anywhere from 110 to 120 times per minute. Way faster than it should be beating. Her blood pressure is within acceptable range, 110/60, but she's running a slight fever of 101.

Add to that the fact that she's talking completely out of her head, and you've got us worried.

She's come up with several different stories in her mind today, none of which are pleasant, and all of which she believed were true. The lower her hemoglobin goes and the more her behind hurts, the worse her mind gets. She should be better after the transfusion tomorrow, but she had a pretty miserable day and evening tonight. It tired Sis out this afternoon, and it wore me slick when I took over the evening shift. Around 9:30 p.m. Mom got so riled up and agitated that the nurse on duty finally gave her some morphine to calm her down and help her with the pain from her behind since she wasn't due for more pain pills for another thirty minutes.

I rose up right there and called her blessed.

And then I went home to see what my house and family look like.

A Room With A View Instead Of ICU

Room 617.

Ah, the 6th floor. It's become our home away from home at the hospital. Only this time instead of being in room 604 or 605, we've switched hallways and graduated to room 617.

To let you know how often we've been on the 6th floor in the past three months, I can tell you that they finally have new chairs in the rooms for friends and family. These chairs are actually COMFORTABLE to sit in, unlike the plastic-ish let-me-torture-your-backside chairs that were there before. A person might actually enjoy sitting in these chairs.

And I knew they were new. Imagine that.

Mom's low blood pressure is again a concern, which is why they have her on the telemetry unit. She keeps saying her heart is wearing out, but it keeps on beating as far as we can tell. The incision site looks good. No oozing of any kind, and they've taken all bandages off of it now. The swelling is much, much less than before, although it's still very noticeable. Her voice is still really scratchy and deep from the vent tube, but that should improve in the next few days.

I spoke with the surgeon's nurse-practitioner today. She was the one who released Mom to the regular room. I asked how long the increased stroke symptoms could last, and she told me it could be as long as 6-8 weeks. She said she hoped there would be some improvement in the next couple of weeks, but she couldn't promise anything, especially given the rough time Mom had with the surgery.

Mom has been insisting she is making dinner for the family. She's having steak soup and homemade bread, and she's been making the soup all day today. She also baked the bread, and had Sis call me from the hospital to be sure I took it out of the oven before it burned. She wanted to hurry and finish her dinner tonight because she had to go to Panera to pick up a bread bowl for my nephew, who is a vegetarian and who will have cheese soup instead.

It's amazing what you can accomplish from a hospital bed when you put your mind to it. And what's even more amazing is that even in the state she's in right now, the uppermost thought in her mind is how she can serve her family. Not her garden, not a television show, not the house or anything else. She wants to do for those people she loves the most.

That's my Mom.

And I love her.

Eternal Sunshine of the Spotless Mind

Mom is being moved to a regular room sometime today if the surgeon signs off on it.

We're both glad and fearful at the same time. Glad, because it means she's that much closer to going back to rehab and eventually settling in her new home. Fearful, because it seems some things have changed.

Oh, we were warned. We were told that the symptoms of her stroke would worsen and that it would be temporary. The thing is, we don't know HOW temporary. A week? A month? This is something we need to find out from the surgeon, as well as possibly getting another brain scan to see if indeed she did have another stroke during the after-surgery problems.

The problems she's having now have to do with memory and speech. Her speech is slurred, much more than it was before. The nurses also say she is having problems swallowing again. But the worst problem is her memory.

She thinks she and Dad are still married.

They've been divorced since 1999.

She asked Sis yesterday where Dad was. When Sis told her he was out of town, she said that was typical of him. Let her be in the hospital, and he takes off on a trip!

Sis may or may not have struggled to keep a straight face with that one.

So today she'll be moved, and we'll work through all of this to see what tomorrow will bring. Hopefully more clearness, both in speech and memory. Hopefully better swallowing ability. Certainly there's more circulation.

I can't wait to see what happens when we do this next time.

Breathing Easier

Mom was taken off of the vent today.

She is breathing well on her own, and just as predicted, her blood pressure has come back up.

Thanks to the marvels of modern pharmacology she is still feeling no pain and is resting comfortably. She will likely remain in ICU for the rest of the day and possibly tomorrow.

More updates later!

Life Goes On Somehow

Tonight Hubster and the kids came with me to see Mom.

They hadn't been in to see her since before her surgery, so it was time. Sometimes they need to see what Sis and I go through on a daily basis to appreciate the life they have and to understand more of the life Sis and I have to lead now. Regardless of whether or not Mom is "the same as she was before the stroke" or not, she is still a person - still someone worthy of love and respect. She is still the same person who fixed all those meals and babysat all those times. The same person whose main joy was in giving to her family. The same person who would do any and everything she could for the people she loved.

Sometimes they forget that. And sometimes they need to be reminded. So tonight they were.

Mom's neck looks much better. You can even tell she has a chin, which is a great improvement over yesterday. Rather than looking as if she has no neck at all, she now resembles a bullfrog.

Sorry, Mom. It will get better with time.

The huge bandage has been removed and replaced with a piece of gauze. There is still a very small amount of oozing from the incision, but it is hardly enough to notice.

Tomorrow morning they have decided to give her another trial to see if she is better able to breathe on her own. There is still some concern that the pressure of the swelling may be compromising her ability to breathe on her own, and if that's the case they'll just leave the vent in until the swelling subsides further.

In the meantime, they are still giving her medication to keep her blood pressure up. The sedation and the morphine seem to be lowering it quite a bit. The cardiologist was in today and ordered her to have more fluids in hopes of pushing her pressure up some, but both he and the ICU nurses believe once she is off of all the sedation and morphine it should right itself.

I'll go by there on the way to work tomorrow, and then again after work to see how she's doing. I usually call a few times in the hours I'm not there, so the nurses and I become well acquainted early on. My vacation/sick/personal leave is quickly being depleted or I would try to take part of tomorrow off to at least see her through the test she has to take.

This having-to-work-to-eat stuff really isn't all it's cracked up to be.

But life goes on, and so will we.

ICU But You Don't See Me Because You're Sedated

And on a ventilator. Still.

Mom's neck still looks like the neck of someone who is world reknown for weightlifting or wrestling. To be sure her airway isn't compromised due to all the swelling, the ICU nurse is pushing for another 24 hours on the vent. That's fine with us at this point. We know how Mom would react to the swelling and to the pain if she weren't asleep.

Her blood pressure is holding steady except when they give her morphine. It takes a dip then, but they have medication to overcome it that works within 5 minutes. We can't tell if she's still seeping from the wound or not, as the doctor has given orders that the bandage is not to be moved for the time being. Again, that's just fine with us.

In the meantime, Sis and I are trusting the ICU to do its job. We come in two or three times a day to check on Mom, but there are no longer any marathon sit-in-the-ICU-all-day sessions as there were when she first had the stroke. It's better for us, and in the longrun, better for Mom. We need to let her rest and heal without hovering over her and worrying.

As I told the nurse, it's so much different this time. For one, we know she'll get better. There's almost no doubt of that. And for another, once you've been through the ICU in a situation where you truly don't know whether someone is going to live or die, it's much easier to turn their care over to professionals with more confidence.

So we'll wait. God will heal her in His own time, and then we'll begin the dance again. Only this time with more blood flow to her brain, and hopefully more energy.

Only time will tell.

Keeping the Status Quo

Fresh from a visit to the hospital, I bring you news.

The pulmonary doctor does not seem to think Mom aspirated any of the fluid or blood that was caused by the hematoma. This is a good thing, because there is less chance of infection developing in her lungs.

Right now she looks like someone took a winter muffler and wrapped it all the way around her neck, then covered it with skin. That's how swollen her neck is. The nurses say there are several drains in place that are catching the leakage, and hopefully the swelling will subside in a day or two. For right now they have ice packs on it.

They're talking about leaving her on the vent until they are completely sure there will be no compromised airway when they remove it. That may mean keeping her on it for a few days or even a week. But better to have her on it that to have her wake up and be scared about what's happened to her body while she was asleep.

Sis and I pop in throughout the day to visit for a few minutes and to make sure everything is going well. It's so different this time because we aren't that worried about if she's going to live or die. This time it's just a question of how long is it until she gets better.

In the meantime I'm trying to complete a project for my part-time job this weekend as well as be at the hospital and be home with my family. I don't think I have this particular juggling act down, so I'll have to muddle through somehow.

For right now though, I've taken a sleeping pill and can't keep my eyes open. G'night.

The LOOOOONG And Winding Day

With apologies to Paul McCartney.

The day started out very early, as days are wont to do. I got to the hospital before either Sis or Mom, but both were there by 7:30 a.m. We had to wait a while to be called for admission since we were technically not supposed to be there before 8:45 a.m. The rehab center believes in sending clients an hour early, so we were there an hour early.

Mom didn't seem to have any fear or trepidation today. We were both glad for that. They called her back and got her loaded on the gurney, dressed in her gown, and the IV started. It took a while for the anesthesiologist to come in to talk to her, and after he did, her doctor came in. He explained what he was going to do, what we could expect, and how long we could expect the surgery to take.

I asked if he was a praying man, and he told me he certainly was - he prayed for each and every one of his patients as he scrubbed up for their surgeries. So he, Sis and I joined hands and prayed for Mom right then and there.

Mom, even without the benefit of anesthesia, slept through the whole thing.

Later, just before she was taken to surgery, another anesthesiologist came in to go over her meds and history with us. Imagine my surprise when I saw it was one of my best friends from high school! Mom knew her and she knew Mom, so we knew Mom would be well taken care of for sure. And off they went.

A couple of hours later the doctor came out and told us everything had gone well and Mom was resting comfortably in the Recovery Room. Sis decided to go to work for a couple of hours. An hour after that I was told she had been transferred to ICU, where she was to spend the night before being transferred to a regular room tomorrow.

And that's where things went a little wonky.

I went back to see her in ICU. The nurse was suctioning her throat, and told me she was just having a hard time coughing up the mucus from the breathing tube she'd had in during the surgery. There was a huge bandage on her neck that was leaking blood all around it. Mom was acting as if she couldn't breathe, even though the nurse said she could. Mom threw off her covers and told me she hurt and wanted me to do something about it.

All of a sudden she started bleeding a stream onto her neck. Since I'm not the type to handle blood and stay conscious, the nurse told me to head back to the waiting room. Being the obedient, not-wanting-to-faint type, I obeyed. I waited for a while, then decided to go one floor down to the coffee shop to get something to eat since I hadn't had anything all day. When I got back some of the other people in the waiting room told me the nurse had been looking for me. I told them I was back and they pulled me inside the ICU door before telling me Mom was back in surgery.

It was that quick.

The nurse hadn't wanted to tell me, but Mom pulling the covers off was a sign she was in distress. When she started bleeding the nurse knew she was in trouble. Apparently, because Mom was on Plavix when she had the surgery, it caused blood to seep into an area next to her esophagus forming a hematoma. It pressed on her esophagus, cutting off part of her airway.
Because of the quick thinking of the nurse, the doctor was able to get into the ICU and they were both able to help Mom in record time.

Mom's heartbeat sped up way too fast during this time because of all the stress. Due to this they had to use the paddles to shock it back into normal rhythm. The doctor pulled out "all kinds of clots" according to the nurse before he took her back to surgery. Thankfully, my friend was still there and she was able to come out and update both of us on what was happening, since Sis had rushed back.

When the doctor came out he told us he didn't think Mom had suffered another stroke due to this, and he'd run extra tests just to be sure everything was alright. He did take her off of the Plavix until further notice, and he told us he was going to leave her intubated and sedated in ICU for at least the night and probably tomorrow.

And then there was a tornado warning and we all had to go downstairs to the basement.

When we came back up we finally got to see Mom. She was peaceful, breathing well on the ventilator, and had been cleaned up from the last time I saw her. Sis and I both knew there was nothing else we could do tonight, so we made the decision to go home and get some rest for tomorrow.

Because it looks to be another long day.

A Little Dab'l Do Ya

Doc took pity on poor Mom and prescribed the aforementioned Xanax for her today.

The dosage was very small - only .25 mg every four hours as needed - but even that amount relaxed her so much she had a hard time staying awake. At this point that's not such a bad thing. Much better that than all the tears and worry she was going through the night before.

During therapy today she was able to move her left leg even more than before she went to the hospital the last time. We're encouraged by that, but still not overly hopeful. The chances of her walking again are almost nonexistent, although she has taken a step or two with a walker.

Tomorrow is the day we've been waiting for since July. She'll arrive at the hospital around 7:30 in the morning to get checked in and prepped for her surgery at 10:15 a.m. We haven't been told yet how long the surgery will take, but we know she'll be staying overnight. We hope to take her back to the rehab center on Saturday with a much-increased blood flow to her brain on the right side. After all, you can't get much worse than 95% blocked, so it has to get better after the surgery. I just wish we hadn't had to wait so long for it to happen.

Call me crazy, but part of me still hopes that the Mom I used to know will come back after these surgeries are completed. The logical part of me knows it's a pipe dream, but the hopeful part of me so wants to believe she is still in there somewhere and will reappear. Yes, even after all this time. Yes, even after all the damage done to her brain. Hope dies hard in this daughter of a stubborn woman. I can't help it.

So tomorrow we'll go to the hospital and sit with her, then sit and wait while she's in surgery, then sit with her some more. And we'll pray the entire time that God's will is done in her life, whatever that may be.

But we'll hope for miracles.

What's Good For The Daughter May Be Good For The Mom

The Boy had a football game tonight, so I determined I was not going to the rehab center to see Mom.

So after the football game tonight I went to the rehab center to see Mom.

Guilt is a powerful motivator.

She had her hair cut and styled today and it looked nice. It's the first time she's been able to have her hair cut since June due to all the going back and forth to the hospital and canceling of appointments with the hairdresser, so I was glad to see it done.

There were three aides in the room when I got there, two of whom were getting her ready for bed. The other was wasting time, which seems to be a habit with this particular aide. Mom is still having problems with her bottom and the after effects of the bleeding in her GI tract. We're hoping this clears up soon. Until then it hurts her every time she has to be cleaned up, and she makes it known. I feel sorry for her, but I feel sorry for the aides as well.

The aides as well as the nurses have noticed her mood change since she's been back from the hospital. I explained to them that she is scared to death about the upcoming surgery, and one of the nurses suggested some Xanax might help relieve her anxiety. Being a fan of Xanax myself, I agreed. It's been a friend to me during times of extreme stress these past months. She'll be checking with the doctor to see what he thinks about using it short-term.

There are times I would like to grind it up and put it in every meal Mom eats, even though I will probably burn in hell for even thinking that.

Just pretend like you didn't read that last line.

At any rate, tonight's visit was very short since I had to pick up The Boy from the school. She's still concerned that he will be hurt during a game. The first question after I told her where I'd been tonight was not "Who won?" but "Is The Boy OK?" She worries.

But I'm thinking she might worry less after breakfast tomorrow....

De Mom Is Demanding

Sis went to the hospital this morning.

Doc called me at home to tell me he was releasing Mom since they couldn't hold her until the surgery due to the Medicare rule. I called Sis, and she told me to go ahead and go to work. She didn't think she'd have any trouble getting Mom back to the rehab center.

Of course, she didn't count on the hospital. Or the nurses. Or the social worker. Or Mom.

All told it took her from around 9 a.m. to around 2 p.m. to get all the paperwork done and Mom back in bed for a nap at Rehab Central. During this time Mom decided to be a pill, wanting this rubbed and that moved and this gotten and that taken somewhere else. And when it was all done just as she'd asked, she wanted to know where I was. Poor Sis had her hands full and then some.

I showed up this evening after work with chicken livers. Unfortunately, I bought them from a different place this time and they were about the consistency of rocks. Mom seemed to enjoy them, though. After dinner I took her back to her room and got her into bed. I unpacked some of her things and she talked to me about how scared she was about the surgery coming up on Friday. She honestly thinks she's got a good chance of dying, and nothing we say can convince her otherwise.

It all stems from a neighbor we had who was supposed to have had the same type of surgery over twenty-five years ago. She talked to Mom then about the "dangers" of the surgery and the "almost certain risk" there was of another stroke or death, and it stuck with Mom all these years. Now the neighbor is long dead, but the fear lingers on. Never mind that Mom's sister had the same surgery successfully. Mom thinks she's a goner.

And then she started feeling sorry for herself.

"What have I ever done to deserve this? I never hurt anyone in my life..."

And that's where I stepped in. After all, enough is enough, stroke or no. I told her in no uncertain terms she was NOT going to die, that this was common surgery, that her sister had lived through it, and so would she. I told her to stop feeling sorry for herself and to buck up and get over it, because none of us had the time or the energy to deal with it. And besides, she was getting the sheets all wet and the aides were going to think it was my fault. It was a pep talk that would've brought a tear to your eye. Truly.

In the end I got a grin out of her and got her out of the mood. But I don't think I got her out of the fear. Only getting through the surgery without dying will do that. And I'm sure it will come back before the next surgery. That's how her mind works now.

She's hoping to see some family before she goes in Friday. We told her a nephew and his family are coming up after the surgery on Saturday. Being the ever-optimistic person she is now, she said,"What good will that do me? I'll be dead by then!"

Of course, my sister Chopped and myself, Liver, will be there for the entire saga. But we don't count. It's the OTHERS she wants to see.

But if we're not there, you can bet she'll want to know why.

It's The Yo-Yo Effect, Only Back And Forth Instead Of Up And Down...Kind Of

Mom is being released from the hospital today for the 132nd time.

Her bleeding has stopped, and the only physical problem she now seems to have is the bottom area. However, that seems to be clearing up as well.

What is not so nice is that we have to take her back to rehab today, then haul her back to the hospital on Friday morning for her surgery. They won't even let her spend the night before surgery in the hospital so that she doesn't have to get up at zero-dawn-thirty to be there. So it's Sunday Monday in, Tuesday Wednesday Thursday out, Friday in, Saturday out.

No wonder the woman is confused.

She was also completely ticked that we had to miss her eye appointment on Monday due to all the hullabaloo, and insisted we could still go if they'd just take the catheter out. I disagreed.

She's been hard to get along with this past week, or maybe it's just that Sis and I are so tired. Last night she asked why Sis and I don't laugh anymore. It's hard to laugh when all you want to do sometimes is be as far away from the person you love and the situation they're in as you can get. Not because you don't love them or care about what happens to them, but because you're tired of it all. So stinking tired you could just keel over at any time. This is one of those times.

But it won't last forever.

We just have to hang on and trust that God has a plan in all of this. That Mom will eventually get through rehab and be the best that she can be. That we will find the best place for her. That we will settle in to whatever normal there is waiting for us and go on with our lives. That there will be happiness for all of us in this again.

God is big, and He can handle all of that. I can't. So I'm putting the yo-yo back in His hands again. He knows all the fancy tricks I don't. He's good at it. I'm not.

Play on, God. Play on.

Just As We Suspected

Another scope was done this morning.

I went to work in order to keep my job, but Sis was there with Mom. Since Mom is an old hat at these things now, there was no reason for both of us to be there. After all, we knew what they'd find.

Nothing. Absolutely nothing.

Since Mom is refusing the laxatives necessary for the camera swallow, there is nothing else the GI team can do except recommend she be taken off of the Coumadin. Of course, Drs. Me and Sis have already decided that, as well as Doc after a conversation with him this morning. We will do this no more.

Plavix will have to do the job, along with a daily aspirin. And if the bleeding continues, one of them will go. Better that than have her live the "life" she's been living the past few months.

As of now the surgery is still scheduled for Friday. We'll see what the morrow will bring, because the morrow has been known to leave some pretty nasty stuff.

And please, let me take this opportunity to thank those of you who have been so very encouraging, hopeful, and who smack me around when I need it. You let me vent here as I can no other place, and that means a great deal to me. I think particularly of my wonderful friend Linds, who has been the rock on which I've stood, leaned, cried, bellowed to, and rejoiced with. "Some American" cares for you more than you know, my friend!

Better, But Still Not Perfect

OK. After the blowup of last post, we'll get on to a saner output in this one.

Mom is better today. No mixing up of words, no unfinished sentences. Her hemoglobin is back up, and measured at over 11 this morning, but had dropped to 10.4 by this afternoon. She is still bleeding from somewhere in the upper gastric region, and that was evidenced by continued nausea today. She was given medication for the nausea which did seem to help. We still have the same problems with her bottom and stools.

The GI doctor's partner came in to see her today and talked with her about doing another scope and possible camera swallow. Mom was emphatic that she was NOT going to take ANY more laxatives, and pretty much told the guy where he could place any laxatives he wanted to try to give her and how high they could go.

He gawked at her, then made a hasty retreat after saying he'd have the partner that usually talks with Mom come in to see her tomorrow. Somehow I think Mom will have the same opinion then as today, but I could be wrong. Or not.

It was all I could do to keep from giving her a "high five."

Mom had three different sets of visitors today, and when the last group left she was pretty tired out. Sis came in for the evening shift before 4 p.m. and I left for the day. I'll be going to work tomorrow, but I plan to stop by the hospital tomorrow morning early enough to talk with Doc about the plan of treatment this time. And to tell him she isn't leaving until whatever it is is FIXED this time. And that she's never going back on Coumadin again.

As for me personally, I am far from worn out. A good friend from church called to find out how things were going and how they could help, so I told her. And it was done. The church has been great throughout all of this from the beginning.

Now that I know that the chest pains were from excessive reflux due to stress they have gone away. I am making it a point to eat regularly, sleep well, and tonight I cooked dinner for both tonight and tomorrow night. The crockpot is my friend. I am not stressing over the state of the house. I am not stressing over the state of the flower beds or the yard. I am taking it one day at a time, and letting God handle the rest. I have no other choice.

This will not last forever. Mom won't be in the hospital forever. Mom won't be in rehab forever. I have to cherish the time I have with her while she's here, but I also have to cherish the time I have with my children while they are home, and with my husband.

Because you never know what tomorrow will bring.

We're Thinking About Taking Out Stock

After all, with the amount of time we've spent in the hospital lately, we might as well be stockholders. Or at least have our own personal suite.

Mom is back in the hospital again, getting yet another transfusion. There is another bleed somewhere in her upper GI tract. Sis and I are both doubtful the GI docs will be able to find it. After all, they've been down her gullet with a scope three times now, and haven't found it yet. Why should this time be different?

But we have made a decision.

Mom will receive no more Coumadin. She's already on Plavix to keep her stents from clotting up, and there is no need for her to be on two different blood thinners. Besides that, Coumadin has done nothing but cause her grief since she's been on it. Rather than keep her from having another stroke, it's kept her from taking advantage of the rehabilitation she could be utilizing now by causing all of the bleeds she's had over the past few months. If they can't keep her INR where it needs to be with the Plavix, then we'll just take the risk of her having another stroke. The way she's living now is literally a living hell, and we won't see her go through it any more. It's too painful for her, and she will not suffer through it again.

Her behind is broken out still and is bleeding every time she's cleaned up. No matter how much protective cream they put on her it doesn't seem to help. She cries out in pain every time she has to be cleaned up, and it breaks our hearts. But it has to be done.

Along with the internal bleeding this time, something else strange is happening. Mom is mixing up words, calling things by the wrong name. She's also unable to speak in complete sentences some of the time, or to tell us where exactly she hurts. Tonight she called the call pad for her nurse a "biscuit" and told the nurse she didn't hurt anywhere even though she was groaning in pain. When she doesn't feel well she often transfers her pain in her mind to other people, including her doctor. The last time she was in the hospital she said she felt sorry for Doc because his hip hurt so much. The first time she had to have a transfusion she was upset because she thought Cutie had to have one as well.

The stress associated with all of this for Sis and me is almost greater than we can bear. We both feel so torn between our mother and our families at home. Sometimes I feel as though I'm the only one from my home family who gives a rip about her anymore, and the rest of them just want it all to be over with so I can come home and cook dinner and be Mom again. My son from out of town comes in when he can to help, but even then Mom wants to know where I am.

For the past three weeks I hid the fact that I've been suffering chest pains. When I went to the doctor for my asthma shots I mentioned it once and attributed it to stress. However, the next time I went I asked for something to help with the pain, thinking it had to do with my lungs. Instead, that doctor sent me to a cardiologist. Thankfully there was no problem on the EKG, and I believe it may have been the reflux raring its ugly head.

All this to say there is no easy fix to this. No magical cure that will make everything all better again. There's just Mom and the love we have for her, and the time we're willing to sacrifice for her because of that love. But somewhere, somehow, there has to be a balance we can reach in all aspects of this without feeling guilty.

And if you could tell me where that is, I'd most certainly buy stock.

Here We Go For The Hundredth Time

We're headed back to the hospital.

Mom awoke this morning incoherent after an evening of complaining about her stomach and her behind. Her hemoglobin is back down to 6, and her INR has yet to be determined. She also has a urinary tract infection.

I so wish this part would END and she could get on with the rest of her life!

Sing Me A Song

When I arrived at the rehab center tonight Mom was just finishing dinner. She was sitting with two very nice ladies. I had seen one of the ladies playing the piano on several occasions and I mentioned how much I enjoyed listening to her.

Big mistake on my part.

Mom got the idea that Dorothy could play the piano and I could sing. That wouldn't be so bad except for the fact that I haven't sung on a regular basis for several months now, and I'm really rusty. But Mom was not to be deterred.

So we left the dinner table and went over to the piano. Dorothy played, and I sang. And Mom, for her part in the little trio, cried. It was really kind of comical. Dorothy playing the piano with a broken ankle, me singing off-key with no breath control at all, and Mom crying because it was so beautiful and she was so proud.

Poor Mom.

Thankfully, our little impromptu concert didn't last long. I threatened the nurses with Ex-Lax if they even acknowledged they had heard anyone singing, much less me. To their credit, they cowered appropriately between laughs.

More Gas In Her Tank

The energy level at the rehab center seems to have increased.

When I arrived after dinner tonight Mom was set for the night, in bed, covers pulled up, but wide awake and loaded for bear. She was fooling with her FotoDialer, and I asked her what she was doing.

"Trying to call YOU. Where have you been?"

I explained the grandkids were over today and I was late getting there. She, of course, thought she had been forgotten. Somehow there is going to have to come a day when we will be able to go a day without seeing her and having her being OK with it. I just don't know when that day will ever come at this point.

Today Mom didn't take a nap. Instead, she joined several of the other residents to watch Seven Brides for Seven Brothers on the big screen television. She really enjoyed the movie, the original with Gordon Macrae. She enjoyed the big screen even more, because she could actually SEE the television. Since the stroke it's been hard for her to see much of anything. Tomorrow I'll be making an appointment for her to see an eye doctor to get new glasses in hopes she'll be able to have somewhat better eyesight. Right now it's hard for her to see even the food on her plate. With different glasses we hope that will improve.

She did not enjoy sitting in the wheelchair for the entire afternoon. Apparently her tailbone got quite sore. Wheelchairs are nothing like easy chairs. The comfort level is greatly diminished, even with a good cushion.

She told me she was able to swing her left leg in her therapy session today. We have also noticed some movement, albeit involuntary, in her left arm. Add that to the fact that she comprehends things she didn't before, and we are very encouraged.

While she was in the hospital after the heart procedure she told me she realizes her mind has been playing tricks on her. For instance, if she is asked to pick up a fork, she honestly believes she is doing it, yet her hand does not move. Whereas before she would argue that the fork had been picked up, she now realizes that her hand is not moving when her brain tells it to even though she thinks it is. That's quite a step forward.

Her new roommate told me she is (so far) very pleasant to live with, and we hope that continues. Mary Lou seems like such a sweet lady. She said that she and Mom talked for quite a while after I left last night.

When I left tonight at 7:15, Mom was just starting to feel a little sleepy. She's got a full day of therapy tomorrow with lots more energy to accomplish a lot more. We'll hope for the best and see what she can do!

Back Where We Belong

Mom is officially back in her home away from home, the rehab center.

She was a bit confused today. At first she thought she was leaving the upstairs of the farmhouse where she grew up because it was being sold, and that made her very sad. After we assured her the farmhouse had been sold many years ago she remembered, but then thought she had been staying at Doc's house. She wanted to stop at Panera to get a gift basket for Doc and his wife to thank them for their hospitality, especially since Doc's wife had been so nice to cook so many meals for her. We avoided that.

After all, if ANYONE is getting Panera, it's US. :>)

The rehab center had stored all her belongings for us, knowing she'd eventually return. It took us a good long while to get her moved into her new room, and not very long at all for us to decide she had accumulated way too much stuff in the short time she'd been there. Sis carted off a whole box of things that were no longer needed. Since there isn't a dresser in her new room Sis will be making a trip to the store to purchase one of those multi-drawer plastic contrivances to hold extra items. As it is she only has three drawers in a nightstand. Far too little storage for anyone, much less Mom.

She seemed to hold up well during all the unpacking, only complaining of her back hurting as she sat in the wheelchair. Sis left with Giganto Box O' Stuff, and I stuck around to get Mom settled back in. The nursing director came in to welcome her back, as did many of the staff. We headed down to the lounge near the dining area where Mom decided she'd like to sit in one of the easy chairs. I helped her into it and we sat and talked for quite a while.

Supper time came, and she ate very well. If she could actually see what was on the plate instead of having to feel around for it things would be easier, but she managed quite well nevertheless. Some of the friends she's made at the rehab center welcomed her back and told her she was missed, and that meant a lot to her. After supper her back was still bothering her so I got her pain pills and got her into bed.

But there was a difference.

Whereas before she would be out like a light immediately after she was put to bed, she is now wide awake. Even with the pain pills, even after the tiring day she had, even after all she's been through. Bright-eyed and bushy-tailed.

So I laid down with her for a while and snuggled. I figured she doesn't get enough of that, and frankly, neither do I. No matter how old I get, and no matter how old she gets, I think I'll still love to lay down next to her and hold her close. She told me a while back that she misses being hugged. She misses physical contact; the closeness of personal touch. But this makes up for it in spades.

She was still awake as I got ready to leave at 7:00 p.m., so I turned the television on for her. I left the volume low enough to where it wouldn't bother her roommate, but it might occupy Mom's mind while she was awake. The aides will come in later and turn it off.

It's good to have things back to semi-normal. Or new normal. Or pseudo-normal. At least we're more comfortable feeling as though we're back where we should be.

And maybe it will stay that way for a while.

We're Springing Her From Da Joint

Tomorrow Mom will be released from the hospital.

It seems as though the doctors agree there should be two weeks between her angioplasty and any other surgery. That means the carotid surgery will have to wait until its scheduled date of September 12th. Barring any more bleeding issues, heart attacks, infections, too-thin blood, pestilence or plague, we hope this will take place.

But we all know what's happened when we've planned on a surgery date before.

Son came up yesterday with Cutie at the special request of his grandmother before she went in for the angioplasty. Today I let Son do the visiting with Mom while I stayed home and played with Cutie, because to be perfectly honest, I was exhausted. Countless hours at the hospital every day will do that to a person. Sis has been putting in overtime as well, and both of us could use a week in the Bahamas about now.

At least now we can go back to our semi-regular routine of every other day. I'm hoping when we get Mom moved into her permanent residence we can cut down a bit on the visits without the intense feelings of guilt both of us seem to have if one of us doesn't go to see her every day.

And it would be so very much easier if that place was only two minutes from my house.

From my keyboard to God's ear....

Sooner Than We Thought

I fully planned on going to work this morning. However, I received a phone call from Sis, telling me Mom was having chest pains yet again.

It seems as though Doc had been in and tried to convince her to have the angioplasty. It apparently upset her so much that she started in with chest pains, proving that, HELLO, she needed the angioplasty.

When I got there things were under control again. Sis was ready to leave for work, and I had decided to take the day off to sit with Mom. And then the cardiac doctor came in.

I explained to him exactly how she felt. That she was scared, that she didn't want to hurt any more, that she was tired of being tired. And in a very gentle way, he somehow managed to convince her that there would be very little pain, almost nothing to be scared about, and that the procedure would give her more energy. In an amazing turn of events, she changed her mind and agreed to the procedure.

We took her down to the Cardiac Cath Lab about 11:00 a.m. About an hour later the cardiac doctor came out and told us they had found a significant blockage in the right artery leading to her heart, and he believed that was the cause of the heart attacks. He told us his associate would be putting a stent in to open the passage, and they'd keep us updated on the progress.

Mom came through it just fine, although it took a total of over four hours to complete. It seems as though her artery had many twists and turns, unlike the average bear, which caused the doctor no end of grief. However, when it came down to it, he stuck it out like a man and did what had to be done. He ended up placing two stents, and this after using four different sizes of balloons to compress the plaque built up inside the artery.

The artery was 99.1% blocked.

After she returned to her room I stayed with her to make sure she didn't move the leg they had to cut into in order to reach the vein that led to her heart for the time prescribed by the doctor. The first few hours were a piece of cake, but the last couple were a trial. She kept complaining of cramping feet and aching ankles, sore knees and an aching back. She kept me busy until I was able to talk a nurse into some pain meds for her that knocked her out again. I finally left the hospital at 10:30 p.m.

Needless to say, this day has been 243 years long. I'm headed to bed, but with a very, very grateful heart. God answered a huge prayer of mine today, and I couldn't be happier.

Tests And Results

Today was joy and agony all in the same day.

Mom got to do her video swallow test again today. She's been on nectar-thick liquids since the last time she was in the hospital because the video swallow test she did then showed she was unable to swallow thin liquids without danger of aspirating some of them. However, today she passed the test with flying colors!

We were so happy that we called her speech therapist at the rehab center to tell her. Mom told her that whenever they asked her to swallow she kept hearing Kelli, her speech therapist, saying, "Norma! You're not paying attention to me! Tuck your chin!" and that got her through the test. Kelli was thrilled to hear it.

Mom has decided she does not want to go through with the heart cath. We tried several times to explain to her what was involved, but she keeps associating it with the bypass surgery some of our relatives have had rather than a less invasive procedure. She keeps saying, "I don't want to hurt anymore. I've hurt for the past two months, and I don't want to hurt anymore." Nothing we say can convince her it won't hurt or will hurt very little.

The problem is that her right carotid is blocked 95%, and her left is blocked 89%. Without the cardiac cath, there will be no surgery on her carotids. The doctors believe she would have another heart attack on the table if they attempted surgery without first trying to fix what they now believe to be a blockage in her heart.

So we're stuck.

The only other option I can think of is to let it go for now, then possibly get her to have the procedure done at a later date along with one of the carotid surgeries. Then again, she may never want to have it done. Of course, there is always the chance of another heart attack or stroke.

Yes, she suffers from dementia. No, she doesn't think clearly a lot of the time. But in the end, it's her life. If it's going to scare her to death to have the cath, we aren't going to force it on her. We'll just hope and pray she comes around to it in her own time.

And we'll hope that time is soon.

A Total Eclipse Of The Heart

Remember those chest pains I mentioned Mom having? It seems as though they weren't so banal.

They were her second heart attack.

This morning I found out from her doctor that he believes she did indeed have a heart attack in addition to the stroke, and that before she received a transfusion this time she suffered another heart attack. He assured me it was a mild one, but a heart attack nevertheless.

How much more does this woman have to go through???

Now he's talking cardiac catheterization to see what's going on inside her heart. With the anxiety she felt from the scope alone, I can only guess what will happen to her blood pressure when she finds out about this. She'll be scared to death.

Three Little Spots

Five pints of blood, two pints of plasma and a partridge in a pear tree later....

The GI doctor did another scope today. Mom was much more able to tolerate it and a deeper sedation, so more could be accomplished. Today there was no blood to be seen anywhere, so we're blessed that the doctor was able to get in yesterday to get the lay of the land and find the general area to look today.

There were three tiny spots, each about twice the size of the end of an earring post. That's all. Just those three little spots. But add Coumadin to the mix and those three spots become bleeders. The bleeders seep rather than bleed heavily, so it takes a while for Mom's hemoglobin to change. But since they don't clot off, the bleeding is a dangerous thing.

The doctor was able to cauterize all three spots, hopefully eliminating the bleeding problem. Our prayer is that it doesn't show up somewhere else. Mom seems to be doing well, other than having some chest pains. They did an another echocardiogram on her heart today just to make sure all was well, and they've had her on the telemetry unit to keep an eye on how her heart is doing throughout all of this.

Today she was able to eat for the first time in three days. The diarrhea has stopped, but then again, there really hasn't been anything in her stomach except blood. We'll wait out the next couple of days to see how things go. We've asked for her to be able to sit in a chair and perhaps have physical therapy come in so that she doesn't lose what she's gained so far. Throughout this whole ordeal it seems it's been two steps forward, three steps back. We're hoping it turns around as of today.

Ladies And Gentlemen, We Have A Bleeder!

After the scope today the GI doctor came out to tell us that Mom does indeed have a bleeder. However, due to her weakened condition he was only able to sedate her lightly and to keep the scope inside for a very short time before he had to stop.

During that time he saw both old blood in the stomach as well as fresh blood in the duodenal area, though he couldn't stay long enough to see exactly where it was coming from. Mom's vital signs started dropping, so he stopped. His plan is to build her up with more blood, which was done today, and then try again tomorrow.

What we didn't realize was that her hemoglobin was again down to dangerous levels. We were told initially it was 7.5, then 7.1, which is still bad, but not as bad as the 4 she was at the last time. However, it turned out she was at 5 this time. With all the blood and plasma she's had, she's now up over 11.

On a positive note, she's been cleared of the C Diff. She's had two negative tests so far, so that means no more isolation for her. However, she's still suffering from lots of stools, probably from all the blood. The nurse tonight said she wants to give her Immodium if it keeps up.

I had to get mean today. Mom hasn't been up and about in a few days, and that causes her muscles to cramp up. Mostly her back, hip, leg and foot. Today she was hurting so much she was crying no matter what we did. I asked the nurse if we couldn't get her something stronger for the pain, and she told me our doctor likely wouldn't order anything stronger because he was known for that.

And she left it at that.

And I almost left it at that.

And then I looked at Mom again and saw how much she hurt. So I went to the nurse and told her that I'd like for her to call the doctor anyway, and if he gave her any guff about giving Mom something that was stronger I wanted to talk to him personally, because it was ridiculous in this day and age to have someone suffer when drugs are readily available to ease pain.

I went back in to Mom's room, and she told me we'd probably be fired from that doctor. I told her if we were that doctor could take a big bite out of my nether regions, because there were plenty of others in the city.

We got morphine within fifteen minutes, and Mom finally got some rest.

And it's after 10 p.m., so I plan to do the same. Only without the morphine.

Here We Go Again

Mom is back in the hospital.

I got a call at work today about noon telling me she had been sick in therapy and had thrown up blood clots. This after a solid day of constant diarrhea the day before, which was unusual even with the C Diff. It got so bad the doctor prescribed something stronger than Immodium AD for her to take to stop it, even with the C Diff.

They called an ambulance to take her to the hospital yet again, and Sis and I met her there. After several tests were done she was admitted and two pints each of frozen platelets and blood were ordered. It took until 5:30 p.m. to get her to a room, and by the time Sis and I finally left at 10 p.m. the blood and platelets still had not arrived.

Sis and I make quite a pair when it comes to taking care of Mom. We have our differences, but when we're in a hospital situation it's almost comical to see us work together. One of the nurses, seeing us turn Mom tonight for the second or third time, told us we really didn't have to do that. She'd be happy to do it for us. We explained we were used to it and considered ourselves to be consummate professionals by this time.

We advised the nurses on how to clean Mom up, how to administer medication, what cream to use on her behind, what type of diet she was on, how often she had to be turned, what to watch out for concerning her dementia, and a host of other things.

Then we asked for the report on the chest x-ray and the EKG that was done in the Emergency Room to aid us in our diagnostic prowess.

We aren't MD's, but we play them on the blog. And sometimes I think we might even know more about Mom's case than they do.

I'm thinking they will do another endoscopy on Mom tomorrow to see where all the bleeding is coming from this time. One would think that if she's vomiting clots it must be from somewhere in the upper GI tract. My hope is that they don't have to do yet another colonoscopy.

I'll be meeting with her doctor tomorrow morning at dawn thirty to see what he has to say. I'll try to get an update out later.

Biting Off More Than I Should Chew

It seems I am more ambitious than smart.

My idea to take Mom to the house for an afternoon is obviously not a good one. Son pointed out that she is still suffering from C Diff, and to take her to the house might be a bigger mountain than I should tackle. Someone else pointed out that it would be extremely hard to handle this by myself. While I had hoped to enlist the help of Hubster, I can see that even with his help it would probably be more than should be done. And, with the infection still present, it really isn't smart to do something like this.

Add to that the fact that I feel like a rat not getting the OK from Sis, and you pretty much have the whole thing wrapped up. Mom's not going home for a visit.

Instead, I plan to take her to Dairy Queen and over to see one of her friends who is due for some major surgery in the next few weeks. Mom won't be getting out of the car, but the friend will come out to visit for a few minutes. They've missed each other, and with Mom so far away and with the infection, it's been hard for her friend to see her on a regular basis.

I think the visit tomorrow will be short. I have much to do this weekend and a very short time in which to do it. Nowadays things are too busy too much of the time.

Appreciate your family. Love them, and let them know they're loved. You never know when life can change.

Would You Like Some Gizzards With That?

Mom has been craving chicken livers all week long. Every time I talk to her on the phone or see her, all she can talk about is (1) her hair appointment today and what time it is, and (2) chicken livers.

She leads a wildly exciting life at the rehab center.

Today it finally really was Friday, and she finally got her hair done. One down, one to go.

For lunch today I decided to try out a place that had been recommended by several people at work. When I mentioned Mom wanted chicken livers, they said this was the definitive place to go:

And so I went Chris went.

I decided to get the full order of livers instead of the half order since I was going to have some for lunch and give Mom the rest for dinner. I thought I might get twelve or fifteen livers. Little did I know that I would get almost TWO POUNDS of chicken livers in the full order.

I ate lunch, then took the rest to the rehab center. I felt kind of like I was in a Bible story with loaves and fishes, only this time it was chicken livers I was dispensing to the residents. And yea, verily, the livers did multiply until all were fed.

Afterwards there was still half a dinner plate full of livers left for Mom that I thought she'd never finish. But she ate every single last one, down to the crumbs. And then they served the "A Taste of Paris" dinner they'd prepared for tonight so she ate half of that. This is the same woman who used to eat a tablespoon of this and a teaspoon of that. Now that she's feeling better she's eating like a farm hand.

With apologies to all you farm hands out there.

During dinner there was a lady at a table across the room from Mom who was new as of today. She was disoriented and thought it was breakfast time instead of dinner time. As the meal wore on she became more and more agitated, and it was apparent she was scared out of her wits. She didn't recognize her surroundings or any of the people there. She didn't know where she was or why. I went over to try to calm her down since Mom was doing well, but she was inconsolable. She wanted her son, and she kept asking for someone to let her speak to him on the phone. The poor woman just wept and wept.

Finally, seeing they weren't going to be able to calm her down short of drugging her, the staff called her son and had him speak to her. Her granddaughter showed up within the next few minutes, and her son followed soon thereafter.

During all of this I kept thinking about Mom. Sure, it's been rough dealing with her the way she's been. It's been rough knowing the Mom we knew will likely never come back. It's been rough dealing with the challenges she has to face both now and in the future.

But all in all, we've been blessed.

Sure, Mom sees relatives that are actually other people. But she knows where she is. She may not know what day it is, but she knows why she is where she is. She may not be able to take herself to the bathroom, but she's not scared to be left at the rehab center by herself. She may not be altogether "with it" but she has it together enough to carry on a conversation, be in control of her emotions, and tell us she loves us.

And that's worth two pounds of chicken livers any day.

I Have A Plan

Since I took Mom for the drive last week I've been thinking. That's always a dangerous thing to have happen, but it may be really dangerous this time.

I'm thinking about picking Mom up Sunday and taking her to her house to spend the day.

I thought I could fix her a nice lunch, let her take a nap in her own bed, feed her dinner, then take her back to the rehab center. It would give her a day away, but it would put her back into familiar surroundings for a while.

Of course, I'd have to handle all the transfers from wheelchair to bed and/or toilet and back by myself. If there was any cleaning up to do, it would be up to me.

And if Mom gets really depressed when she has to go back, that will be my fault as well.

Because really, I don't have to take her there. I can just let her live where she is for the time being until we move her to either the assisted living place or the nursing home, whichever she is most able to handle.

Is it cruel to take her home again? Or would it be nice for her to visit the place?

Sis will be against it totally. She had a friend whose mother was in much the same situation as Mom. They took her home for Thanksgiving and it took her until Christmas to recover. If I do this, I don't think I'll tell Sis.

I think I'm looking at this as a way of getting Mom ready to visit for Thanksgiving. Maybe if I can take her home like this several times before Thanksgiving, it won't be such a big deal for her if we have Thanksgiving at the house the way we always do.

But I need advice. Will it harm her to do this? What do you think?

Is It Friday Yet?

It's been a week of Fridays so far in Mom's mind.

Every day when I speak to her, either on the phone or in person, she asks me what time her hair appointment is that day. And every day I tell her that her appointment isn't until Friday and not to worry about it because they'll come to get her when it's time. And every day she tells me that she thought that day was Friday. Again.

It must be like living the movie Groundhog Day in real life. I don't envy her at all.

However, I must admit to running out of patience tonight when she made me call Sis to find out when the dadgum hair appointment was.

"Hello?"

"WHEN. IS. THE. HAIR. APPOINTMENT. BECAUSE. MOM. IS. DRIVING. ME. CRAZY. TONIGHT." thru gritted teeth.

"So what else is new?"

Her appetite has picked up quite a bit. She does best with finger food, but manages well with a spoon if she can only see what is on her plate. Her eyesight is severely compromised, so the best she can do is "feel" her way around the plate with the spoon, catching what food she can as she scrapes her way around it. It works for her.

I tried to take her outside this evening, but we had a bathroom emergency. Since the aides were having a meeting with the wound care nurse, the emergency turned into a mess. Because of that they just cleaned it up and got her ready for bed. I suggested they try sitz baths with her to ease the pain on her behind, but the cream they're using may be numbing the area somewhat. I hope it is, because it looks just terrible.

Tomorrow is Sis' day. The next day I go back will be Friday.

Again.

It Isn't All Candy And Flowers, Folks

Mom had one of the aides dial the phone for her today so she could call me at work.

It seems as though the C Diff came back with a vengeance today. Mom told me she couldn't stand much more of this, and my heart broke for her knowing there was absolutely nothing I could do. She cried and cried as she spoke, and I tried to console her the best I could until Sis got there. Thankfully she was only minutes away.

I left work early in order to see the doctor and find out what his thoughts were. I caught him just as he was leaving since I got there late. He took the time to tell me everything that was going on, including the fact that he was going to increase the medicine for her C Diff, run another test to see if it was the weaker or stronger form, and continue with a different cream for her raw behind. He answered any questions I had, and then told me we may actually have to hold off on her surgery yet again if this stuff doesn't clear up. He realizes it's a risk, but he believes it's more of a risk to send her into surgery with this problem.

I went in to see Mom after speaking with Doc, and found her being cleaned up once again. I knew her bottom was raw, but I had no idea how raw it was. It was bleeding from open sores. Every time she has to be cleaned up, it feels like fire attacking her behind.

And there's not a thing we can do about it.

While Sis and I were there she had another episode. She pressed the button for an aide right away, but she was in so much pain that Sis did something I've never seen her do before. She put on a pair of gloves, got a warm washcloth, had me roll Mom over, and went to work.

You have to realize how big a deal this is. This is the same sister who gags when anyone even mentions the word "snot" - the same sister who gagged when she changed her own children's dirty diapers - and yet she did this for Mom without blinking twice. I was so proud of her I almost cried.

Of course Mom, upon finding out what Sis was about to do and knowing her history, said, "Don't you let her throw up on my butt! That'll hurt more than the poop!"

And then she laughed so hard she had to be cleaned up even more.

Please pray for this crap (and I do mean CRAP) to heal soon. Mom is so weary of it.

Call Me Anytime

Today I got a call from the rehab center. They usually call when Mom changes medication, or to give me her hemoglobin or INR count, or to let me know she needs this or that.

But today's call was different.

IT WAS FROM MOM.

Please bear in mind that Mom hasn't called me on her own since June 12, 2008, the night of her stroke. She hasn't been able to dial the numbers. And to be honest, I'd all but given up hope that she'd be able to use her new FotoDialer that we got her for her birthday.

After I got everyone's photos loaded into it and the numbers programmed in, I took it to her along with a phone from her house. The phone in the rehab center is difficult for her to use, so I hooked up hers instead. I worked with her for fifteen minutes, always using the same, measured tone, always saying the same three things - "Pick up the phone. Set it to the side. Press the button next to the person you want to call." She just couldn't seem to get it. So we stopped.

I asked Sis to work with her the next day, and I asked the nurses to have the occupational therapist work with her as well. Then I forgot about it all.

Until today.

I was sitting here at work when my cell phone went off. It was my cousin, wanting to know the address for this blog. While I was talking to her, my phone's call waiting went off. I answered, and Mom was on the other end!

It didn't matter that she thought today was Friday and wanted to know why I wasn't coming up until after work because she was supposed to get her hair done and wanted me there. It didn't matter that she told me we should have gotten ice cream for Raymond, the imaginary aide that "went with us" on the ride yesterday, because "he was most disappointed and told her so" today. It didn't even matter that she dropped the phone while we were talking.

MOM CALLED ME. ON HER OWN.

And that, my friends, has made my whole day.

C'mon Momma, Let's Go For A Drive

Today I broke Mom out.

We went for a drive, she and I. We were gone from the rehab center almost two hours, just driving around, looking at places, visiting with people. I think she thoroughly enjoyed herself.

While we were out we stopped and picked up flyers for condos that were for sale in the area. We hit several different condo neighborhoods. and found several different condos that she thought she'd like to live in some day. "Some day" is the operative phrase here. Reality is that she will likely never be able to live in a condo, but it made her happy to shop, so shop we did.

We stopped at a drive-in and had popcorn chicken and a chocolate milkshake with extra chocolate. She ate half the chicken and drank all of the milkshake. We drove by Sis' house and she and her husband came out to visit for a while. They also helped pull Mom up in the seat, because she'd drifted south as we drove.

From there it was back to the rehab center. Mom was tired out and ready for bed by the time we got there. Once inside she settled gratefully into bed, thanked me for a good time, and was out like a light.

It was a good day.

Such A Deal...

For the past week or so I've been driving Mom's car. It's an ugly story having to do with transmissions and transfer cases and bearings and stuff you'd really be bored by, so I won't take the opportunity to let your mind delve into the pit of all things automotively wrong with my life at this moment.

You're welcome.

Her car is a 1999 Buick Century. The only thing wrong with it is that it has a cassette player instead of a CD player. It's in mint condition...the typical "little old lady" car.

And it has a whopping 21,000 miles on it.

I'm not a mathematician, but I think that averages out to about 2333 miles per year, more or less. My tennis shoes get more wear than the tires on this car, and I hardly ever walk anywhere, as is evidenced by the size of my behind.

Now, the original plan was this: Pay off the car, purchase a Smart Car, hand my car down to The Girl, and her car would go to The Boy on his sixteenth birthday. Now we're not so sure. We're actually thinking of buying the Buick from Mom.

It will take a lot to make up the difference in payments over the cost of gasoline if we buy the Smart Car. A whole lot. With the Buick we'll have a car that will be less gas efficient, but a lot more comfortable. It will also be able to hold Mom's wheelchair, meaning we'll be able to take her places relatively easily.

And to top it all off, with Mom's dementia, she'll think we're still taking her places in HER car, which will make her feel like she still has some sort of independence. I can't help but think that's a good thing.

The problem will come when she wants to trade it in.....

Exhibitionism Is Not The Name Of The Game

There is one aide at the rehab center who insists on leaving Mom undressed from the waist down on her bed when we aren't there. I have no idea why he does this, except for the fact that it may be easier for him to clean her up when she has a bowel movement. He's never explained himself, and usually has her covered with at least a sheet. He knows we do not appreciate it, because when we come in to visit we always have him get her dressed and out of bed.

And yet it continues.

Today Sis went in to see Mom and found the door to her room wide open, no curtain drawn, and Mom lying there completely naked from the waist down. Any visitors to the building would have been able to see her in that state. Sis saw a folded sheet in the chair next to her bed.

Mom constantly complains of being cold, probably due to the blood thinners they have her taking. Doesn't it make sense that if she was left half naked on her bed that she would be at least covered with a sheet? Especially if her door was left wide open for any and everyone to see? Yet no one would admit to leaving her that way today. Everyone Sis complained to washed their hands of it. "I don't know who did it, but it wasn't ME," they said.

So Monday I'll be talking to the head of nursing to lodge a complaint. This is not only ridiculous, but it shows no respect for Mom whatsoever. How can anyone in that state have any dignity at all?

In addition, she just had her hair done Friday evening. She was given a shower on Saturday and they washed out all the work she'd paid to have done the day before. They'll be hearing about that as well.

Common sense does not seem to be a prerequisite for working at this rehab center. It makes me wonder about the therapists if the aides are this dense.

As for the letter to Doc, I did send it. I got a call from him on Friday apologizing for his attitude the day I saw him. There will be no more misunderstandings. We have things straight now, and we know what each other expects. That's a good thing.

There are more battles ahead, I know. We'll be selling Mom's car in the very near future and putting the money into savings for her care. As soon as she moves into whatever facility she can move into, be that assisted living or nursing home, we'll start to disassemble the house and get it sold. All of it will be so very hard to do.

But our memories and our lives are not the things. Our memories and our lives are the people we love and the time we have to spend with them. Without the people, the things are just ashes in the wind. So to keep Mom comfortable and healthy and reasonably happy for as long as we can, we'll sell the things.

She's worth much, much more.

Stress Happens, And It Has Nothing To Do With Hormones

After the fiasco of yesterday, I have taken the day to reorganize, recoup, renew, re-whatever else I needed to do to get yesterday out of my system.

Mostly feel sorry for myself and cry a lot. I call it the monthly Pity Party. I have one just about every month, because that's just about how long I can go before the stress gets to me and I have to let it all out somehow.

It ain't pretty, but it's better than kicking the dog or beating the kids.

Sometimes.

I wrote a letter to Doc to make sure we were on the same page as well.

Dear Doc,

I wanted to take a few minutes to be sure we were OK with each other after yesterday.

Just to be certain you understand, in no way do I doubt your abilities as a physician. I know that you have the talent and the “smarts” to handle Mom’s health care all on your own. Please be certain that both Sis and I trust you implicitly in this regard.

Having said this, please also understand that while you’ve been at this for almost 30 years, it’s our first time going through something as devastating as this. We don’t know anything about it. We’re ignorant of almost everything except what we can glean from the internet. We’re going to have questions and concerns about Mom and her care, but that in NO WAY reflects on you. It’s just information we need to set our minds at ease – to let us know we’re doing the best we can to take care of
her.

It’s an awesome responsibility for me personally, being as I have her medical power of attorney. Right or wrong, I feel as though if anything goes wrong with her it’s my fault. I know certain things won’t ever improve, but I continue to look for the best life possible for her in the future. Needless to say, the stress level sometimes runs high.

If I’ve said anything to make you doubt my trust in you or your ability, please forgive me. It was never intended that way. And for pete’s sake don’t tell Sis I wrote... she’ll never forgive me. I’ve embarrassed her enough for a lifetime throughout this whole thing anyway with all the bawling and the snotting and the wailing….I always was one for drama, remember?

Just know that she’s my mom, and I love her. And I trust you with her. And I’m sorry. And I hope we’re back on an even keel now, because I’d much rather have us smiling and joking while we’re talking instead of feeling as though we’re at odds. I promise, no more Pepsi on the sly until you say it’s OK, no matter how much she begs.

Are we OK now?

I truly hope we are.

Mom had my cousins call me at work today to see if she could have a Pepsi. They handed the phone to me, and when I told her no, unless it was thickened, she hung up on me. I'll pay for that tonight when I go see her.

In the meantime I'm still waiting on a photo from one more person to be able to set up Mom's photodialer for her. I can't wait to see what happens when she can call out. Heaven help us all.

Stress happens. Thank God He gives us an outlet for it.

I'm So Tired Of It All. Can I Stop Now, Please?

Today was not high on the list of good days.

I've been having a running war with Mom's doctor's office. Rather than just give her doctor a message that I'd like to have him call me regarding questions I may have about her care, they act as if I have no part in it. They tell me they prefer to deal directly with the rehab facility nurses. When I tell them that I am the one in charge of her care and I am the one that needs answers, they refer me to the rehab nurses.

And we go round and round.

So today I went to the rehab facility and met with Doc, who was a high school friend. Only Doc seemed to be a bit defensive today. I asked the questions I needed to ask, as did Sis. We got the answers we needed to get. And then I asked about the Great Wall set up by his staff.

And was met with another Great Wall.

Now, Doc and I have never had a problem communicating in the past, but for some reason there was a Great Amount Of Tension today. So I fussed and fumed about it for a while, then I did what Christians are supposed to do.

I shanghaied him on the way out of the facility.

I told him I knew he had great responsibility on his shoulders, and I apologized if I had done anything to make things harder for him.

It was then I found out that he felt I was questioning his judgment in Mom's care. He told me he'd been doing this for thirty some odd years, and he really did know what he was doing. I told him I had no doubt as to his knowledge or his care of Mom, but that this was my first time going through something like this. I'm going to ask a lot of questions because I don't know things and because I worry, not because I'm second-guessing him.

And of course, I cried.

We left each other on better terms, I hope. Understanding each other more. I'll try to let him be the doctor, and I'll try to worry less. Hopefully we'll meet in the middle somewhere, and Mom will benefit from it.

As for right now, I'm tired of dealing with it all.

I could whine more, but I'll leave it there. You get the idea. Suffice it to say the remainder of the day has been somewhat of an emotional upheaval. Look at me cross-eyed and you'll either get laid low or I'll burst into tears.

As Mom would say, "Have you stopped taking your medication?"

No, Mom. But I wish I had some more. A whole bunch more.

Hail, Hail, The Gang's All Here

I did not see Mom this weekend.

I went in for a few minutes on Friday night on the way to my part-time job, but only for a few minutes. Son and his family were in town, and since I knew they would be there Saturday along with Sis, I didn't go then. When Sunday came around I had a migraine and ended up spending the time I'd normally spend with Mom in bed. However, Son and his family were there, so I didn't feel so very bad about not going.

Add to that the fact that my cousin from Alabama and his wife came into town Sunday night, and my cousin from Texarkana and his wife came in tonight, and I thought my bases were pretty well covered. That is, until I went to see Mom tonight.

Even though I called and explained to her about my migraine last night, she thought she'd done something to drive me away and that's why I hadn't been there for two days. Don't bother packing my bags, I'm already on the guilt trip without them.

On a more positive note, she fed herself dinner tonight. She actually asked for spaghetti, something she usually won't touch with a ten-foot pole. I cut it up for her and handed her the spoon, and she was able to eat almost all of it by herself. True, she was messy, but she ate it herself. That was a BIG thing.

In addition, she got to sit in a recliner tonight after dinner. She enjoyed that immensely, so I asked if she would be able to do that every day. The answer was yes. Tomorrow I'll be taking off work early to talk with her doctor about the continued problems with the C Diff, as well as the fact that he is not allowing her to drink regular liquids. As of now all she can have is thickened liquids.

Imagine having to drink water the consistency of liquid jello. Or coffee. Or milk. None of the liquids Mom drinks now slakes her thirst because they are all of that consistency. Only when we sneak her Pepsi or regular water does she get anything that isn't thickened. We'll be talking with the doctor about that, trying to convince him to rescind the order tomorrow.

Another concern is her blood count. It's down to 9.0 again, meaning there is certainly going to be another transfusion in her future. Where is the bleeding coming from, and why can't it be stopped? And why are they starting the Coumadin up again if she's bleeding internally somewhere?

Her health is a fine, fine line to walk. I just want to make sure we're walking a straight line instead of in a circle.

One day at a time....

It Ain't The Ritz, But You Pay The Same Amount For It

Today I looked at a nursing home for Mom in case she is unable to go to assisted living when she's discharged from rehab. Only I keep forgetting, you're supposed to call them "extended care centers" now.

A rose by any other name still smells of urine.

My grandmother died in the nursing home closest to me, and Mom made us promise we'd never put her in there. In the past few years another woman who was like a grandmother to me died of neglect at that same nursing home, cementing its fate in my mind. Mom will never see the inside of that place again.

I have looked at a couple of other nursing homes during the time Mom has been in rehab. My fear is the dementia will keep her from living in assisted living, and that was borne out when I last spoke with the director of the place we wanted her in. Mom will have to undergo a psychiatric test to see if she is mentally able to live somewhat on her own if we decide to go that way.

If she is able to pass the test and live in assisted living, the cost would be a full half of what it would be to put her in a nursing home. In assisted living she would have a one-bedroom apartment. In the nursing home she would have a room the size of her bedroom at home. Both places would prepare her meals for her and dispense medication. The only difference I can see is that there would be more supervision and less privacy in the nursing home. If that's what she needs, fine. But I wonder if we couldn't provide the same thing for her in an assisted care setting with a part-time companion.

I'm just thinking out loud here.

The nursing home I went to see today was smaller than most. It was secure and it was clean. There was no smell, either of hospital or of urine, in any of the hallways, rooms, dining areas, or common rooms. The common room was homey, and looked more like a large living room in someone's home. There was no one slumped in a chair and sitting at a nurse's desk. A pleasant smell of dinner was in the air, and floor to ceiling windows in the dining room looked out onto a wooded area.

This nursing home is in the process of being repainted, remodeled, refurbished. The people I met were all working with clients and seemed pleasant. Clients seemed to be well-cared for, clean and alert. It was almost as if they were expecting me, although I made a point of not calling before I came.

Of course, I'll check out the government reports on the place to see how it rates. But for now, I'd have to say it's a frontrunner in the nursing home race. It's halfway between Sis and me, more or less. It's close to the hospital Mom prefers. It's on the route I take home, so it wouldn't be out of the way to stop and visit.

But I'd still like to see her in assisted living.

Even if it ain't the Ritz.

Trading Places

Role reversal has taken on a whole new meaning.

Tonight as I sat with Mom for a while, she was suffering such discomfort from the C Diff that I almost hurt for her. In much the same way as I always wanted to take the hurt away from my children, I now find myself wanting to do that with my parent.

I don't mind taking care of Mom's needs. I want to be there for her. I want to help her in any way I can. I just always wanted her to remain the mother somehow, and me the child. Not the other way around.

Now I try to provide comfort and a listening ear to her, when she's been the one to provide that to me all these years. So where do I go now for my mothering? Or does this mean I finally have to grow up?

Somehow, instead of looking at this as an opportunity to shine, I'm looking at it as a role I didn't ask for and don't want. Realizing there is an end to everything is not the same as living the end of something. New normals are not always fun.

Tonight I took a germicidal cleanser that kills the C Diff spores up to the rehab center. They have been bad about cleaning under Mom's nails, and I wanted to make sure there was no contamination there to reinfect her. After a good soak and scrub they looked much better, and Mom was much happier with them. I left the cleanser there so that visitors could use it as they left, since good handwashing is key to prevention of the spread of this junk.

While I sat there with Mom she kept complaining about how much her stomach hurt. And, just as if she were my child, I tried to comfort her through the pain. She told me of her embarrassment during therapy sessions - how she no more than gets to therapy than she has to go to the bathroom. How when she stands up to use the walker, it all comes running out of her. How she wants to hide under a rock rather than have to be cleaned up yet again...and again...and again during the day.

I promised her it wouldn't last much longer. I reminded her of the medicine she was taking, and that it would take some time for it to work. I told her it was a terrible thing, and I was so sorry it had to happen to her.

Then I got the nurse to give her a pain pill so that she could go to sleep without feeling the pain in her stomach anymore. So that I wouldn't feel the pain of watching her hurt anymore.

After the pill took effect I washed my hands with the bacterial soap, kissed her on the head, and left.

And then I wished for the millionth time that I could call my Mom and talk about it all.

God's Drivng, So I Don't Have To

Today we were pleasantly surprised.

Due to the infection Mom has, she has been moved to a private room. I suspect it's also due to the fact that they're afraid anyone they put in a room with her will request to be moved again as well, but we'll take the gifts where we can get them. They get a double room to rent out, and Mom gets her privacy.

It's a win-win situation.

When I asked if she would remain there for the rest of the time she's in rehab, I was told there shouldn't be any reason to move her. I hope not, because each move seems to confuse her. The more we can keep things the same, the better off we are.

Along with that little piece of good news came a piece of not-so-good news. Mom's surgery, scheduled for the 12th, has to be postponed for two weeks. The primary care doctor feels as though the infection has taken a toll on Mom, and he wants to see her stronger before they proceed with clearing her carotids.

While I agree, I am at the same time frustrated. I really want these surgeries to be over and done with. If she is to gain or regain anything from a mental standpoint, it stands to reason that the longer we wait, the less chance there is of any benefit other than less risk of another stroke and improved circulation.

I'm not a real doctor, but I play one on the blog.

Yes, I'm tired of waiting. I want to know for certain sure that there is nothing else that will help her mental state. That I can either rejoice because it did help or that I can finally give up because it didn't. I don't like being in limbo, even though I am fairly certain of the outcome. I need surety.

I need black and white.

And somewhere inside, even though this is truly ALL ABOUT MOM AND NOT ME, it pisses me off that we have to wait...again.

How petty is that???

So we'll wait. And if the surgeries are postponed again we'll wait some more. And we'll keep on waiting until they're over.

Because God is in control of all of this...not me.

And I can't tell you how very glad I am about that.

Yet Another Bug In The Works

Today I found out Mom has a bacterial infection called C-Diff, or C. Diff or See? Diff! or as Mom called it, Sea Salt. I have no idea how it's supposed to be abbreviated, but I'm sure my DIL THE DOCTOR does. (Had to throw that in, you know. Proud MIL and all...)

Anyhoo.

This is the reason Mom has been cramping up and subject to immense amounts of "output" this past week. I feel so sorry for her. Pepsi helps, but not enough. Every time she eats anything it goes straight through. Tonight I brought her a fresh peach, hoping to entice her to eat. She would have none of it, and told me the thought of it made her sick to her stomach. It's no wonder.

So to get rid of this evil bug, Mom will be taking an antibiotic three times a day for the next three weeks. We don't know yet if this will wreak havoc with the schedule set up for her surgery testing on Thursday of this week or her surgery on the 12th. I've asked the nurse to have her doctor (my high school chum) call me at work tomorrow when he visits the rehab center to see what he thinks.

In other news, her INR (blood thickness) is up over 6 again, meaning her blood is too thin. It's supposed to be around 2, so they're holding off on giving her the Coumadin for three days. The doctor has such a fine line to walk with this drug. I don't envy him at all.

Mom was short on stories today. She only told me that Pseudo Daughter had been up to dress her this morning. Mom couldn't understand how PD got there, because she's only fourteen and can't drive yet. I told her I didn't know, but at least she got her clothes on so that was something to be thankful for.

Unlike yesterday when we walked in on her practically in her birthday suit. Not a picture I want to remember.

I'm beginning to really roll with this fantasy stuff. I'm thinking I might actually be able to handle this long term. After all, it's been TWO WHOLE DAYS. I've set a new record.

Only time will tell.

Shades of Gray

Wow.

What amazing friends I have.

If you haven't had the chance to read the comments from the last post, please take the time to do so. There is so much wisdom in those words, so much comfort, that anyone going through this type of situation needs to hear.

And I was the one who needed to hear it most.

I have the habit of always wanting to "fix" things. Whether that be relationships between friends, helping someone in need, or even healing Mom of dementia by using the power of reasoning, I try to fix it all. And it's exhausting.

And as my good friend Kitti once said to me, "God only sent one Savior, Chris, and it ain't you."

But that didn't stop me in Mom's case.

However, after reading what was written in the comments this morning I decided to immediately apply the concept of giving Mom the "gift" of living in her fantasy with her. For someone who is stuck in realism there was the thought that it might just be a really rough thing to do. There is no "fixing" a fantasy world. There is no black or white here.

It's all different shades of gray.

The Boy came with me, albeit unwillingly, to visit his grandmother. After the fiasco of the "party" the day before he was none too keen on seeing her again. To his credit, he didn't complain.

We stopped at Subway to pick up sandwiches, then arrived at the rehab center. When we entered her room two things were immediately evident. 1) Her roommate had requested and received a transfer to a different room, and 2) Mom was undressed from the waist down, covered only by a sheet. She'd also managed to unbutton her blouse and uncover herself, leaving nothing to the imagination.

Thankfully, I was the first to enter the room. After quickly assessing the situation, and before he could see anything, I asked The Boy to wait outside while I called an aide to help get her dressed.

It seems the digestive tract problem she'd had while in the hospital Tuesday for her transfusion has continued on a daily basis, and they believe she may have a bacterial infection. Because of that they left her to "air" since her bottom is so sore from all the bowel movements. Which would be fine if she didn't suffer from dementia and take it upon herself to remove the sheet covering her along with the rest of her clothing, leaving her "parts" out waving in the breeze.

So.

We got her dressed and to the dining room, where she managed to eat half of the sandwich we brought. During that time she mentioned that my two cousins, one of whom lives in Alabama and one of whom lives in Texarkana, had both been cooking all the meals at the rehab center all week. She couldn't understand why they hadn't spoken to her yet.

I explained they were probably too busy working, or maybe they didn't know she was there. She didn't understand how they could work there all week and not know she was there, but she did understand the busy part, and we went on to other things.

Score.

Next she spoke about the ex-NASCAR driver who drove her to the hospital for the transfusion on Tuesday. She said she felt so sorry for poor Cutie, my granddaughter, because both she and Cutie had gotten carsick all over themselves on the way there. I agreed it was a terrible thing to have happen, and promised her she'd never have that driver again. I asked her if Cutie was sitting next to her on the drive to the hospital. Mom replied that Cutie had her own little wheelchair right next to her all the way there. She couldn't understand why Cutie had to go through that blood transfusion or why she had diarrhea like she did the entire time she was there. I told her it was a terrible thing to have to go through, and I hoped it never happened again.

Of course, Cutie is two years old, perfectly healthy, and was at home with her mom and dad the entire time this was taking place. But it was so much easier, so much more peaceful, to just go along as if Mom knew what she was talking about. Not lying to her, not agreeing that she was right, but not correcting her either. Just using that shade of gray.

The stress just disappeared.

Even The Boy noticed it. He said the difference was like night and day.

Mom even threw a few barbs, and we just laughed them off. LAUGHED THEM OFF. What was impossible yesterday is suddenly possible.

Thank You, God, for friends with wisdom. Thank You for peace in the midst of the storm.

And thank You for shades of gray.

Mom Jekyll and Mrs. Hyde

It was not a pleasant day at the rehab center.

Mom's dementia seems to be getting worse. The nurses have noticed it, and so have Sis and I. Last night she kept her roommate up most of the night because she was talking to photos she saw of her grandchildren that had appeared on the ceiling. Today one of the nurses saw her holding a conversation with a chair. And along with the worsening dementia has come a somewhat hateful attitude toward others, including those who care about her most.

Today we had the much-talked-about barbeque luncheon to celebrate Mom's birthday as well as my nephew's birthday. Both were last week.

For some reason Mom has gotten it into her head that Nephew works as a physical therapist at the rehab center. This could be because there is a tall, young, hairy man that works there as a physical therapist that slightly resembles Nephew. But no matter how many times you tell Mom that it isn't Nephew, she will not listen. She argues that it is, and that is that. Today at lunch Nephew had to tell her again that he did not work at the rehab center. She called him a liar and told him he'd hurt her feelings.

Not good.

Then there's The Boy. There was another boy visiting his grandmother at the rehab center that Mom mistook for The Boy. She became very upset when the other boy told her she wasn't his grandmother and that his grandmother was sitting at the next table. She felt as though she'd been disowned by The Boy. That was also brought up by her at lunch today. The Boy was also called a liar when he denied he'd ever said anything like that to her.

Again, not good.

Then she started in on me. I tattled on her to the nurses. I wouldn't let her do this or that. I told her she wasn't trying hard enough.

Finally, when all of us were afraid to talk for fear we'd be the next target, I'd had enough. When she started in again on someone I told her to stop. Just stop. By that time the "party" had been ruined for everyone anyway. We all finished eating, and I took her back upstairs to her room while everyone else cleared up.

While we were alone I tried to talk to her. I told her how much damage she was doing to her relationships with the grandchildren and everyone else by calling them liars and saying such awful things about them. I explained to her once again that her brain is damaged and that it has to heal, and during the healing process she is thinking things that aren't true.

For a while she's penitent. For a while she says she would never hurt any of her family knowingly. For a while she's OK. But only for a while. Then the mean part takes over again.

My fear is that I will eventually not want to go back to see her if she keeps this up - or even gets worse. My fear is that I'll find excuses to keep from going...to keep from hearing the venom she's putting out. For now I'll try to change the subject - get her to give me the recipe for a cherry pie, or tell me how she grows tomatoes - instead of letting her go on this way. I'll try to remember that this is not the real Mom, but the sick one.

And I'll keep on loving her, no matter what.

Call Me - Anytime

Post-stroke dementia, which is what Mom apparently has, may or may not be helped by the surgery she is going to have on the 12th and again two weeks later. Add to that the fact that she can only see out of the right half of both of her eyes, and you can see she has to have an intensely weird focus on the world right now.

Because of this she's had a hard time concentrating on anything as simple as watching television. She can listen to it if someone else turns the channel for her, but can't seem to really SEE it otherwise. It's the same with dialing a number on the phone. She has a very hard time putting the shape of the number together with the shape of the number written on the phone, and then has a hard time following through to actually dial the number she punches in.

Knowing this, I found what I hope will be a solution for her.



Basically, it's a system where she can look at photos of the person she wants to talk to, lift the receiver of the phone, punch the button next to the picture of the person, and it will dial the number for her. The box holds 24 photos in all. That way she won't have to remember numbers and what they look like in order to talk to someone, and it might give her a new way to pass the time during the day.

We're also considering getting one of these for my 92-year-old mother-in-law. It's hard for her to see to read anymore, but she can make out faces on photos. This could keep her from dialing the wrong person all the time when she wants to talk with someone.

In case you would be interested in one of these for a family member, the website is:

http://www.photodialing.com/buynow.html

As far as I'm concerned, it's well worth the cost.

My next conquest will be a cell phone she can use that doesn't have to flip open...

What A Way To Celebrate

Another day, another transfusion.

Mom's hemoglobin went down to 8.3 yesterday, so rather than risk it going down further before treating it, her doctor ordered a transfusion of two pints of whole blood for her today.

Today was her 75th birthday.

The rehab center doesn't handle transfusions, so transportation was arranged for Mom to get to the hospital as an outpatient. Unfortunately, they sent an ex-NASCAR driver to be her chauffeur, and she ended up getting carsick all over herself before she got to the hospital. Sis met her there, and the nurses got her cleaned up and into bed. They started her IV, then waited for the blood to appear.

And waited.

And waited.

Two hours later they finally started the transfusion. By then Mom had developed a rip-roaring case of diarrhea, and they spent the remainder of the day cleaning up after her every twenty minutes. I don't know if she picked up some kind of bug or if the bleeding she's been experiencing triggered it, but she's had a really rough go of it lately in the digestive tract. The nurses, according to Sis, were wonderful about it all day long. Poor Mom, however, was still sore from the last bout with All The Laxatives.

I got there as soon as I could after work. Mom hadn't had anything to eat all day because of the queasy stomach. Sis was able to get some pop down her, and we managed to get her to eat half a graham cracker. By 8 p.m. when they let her go, we were all exhausted. We got her back to the rehab center without the help of the ex-NASCAR driver, and got her into bed around 9 p.m.

It was a very. long. day.

On the 7th we have to bring her back to the hospital for pre-surgery testing, then we have to have her back again on the 12th for her first carotid surgery. Sis and I are getting pretty adept at this transportation thing. We're thinking of painting Mom's car bright yellow and putting our rates on the side to make up for the gas we use going back and forth to the hospital and rehab center.

With any luck they will have balanced the Coumadin level out a bit better so we can avoid the blood bank for a few weeks. I'm getting to the point where I truly despise the hospital.

For now, I'm headed off to bed. Tomorrow will be my fourth day in a row with Mom, unusual in that I was supposed to have today off. I'm looking forward to spending time with my family on Thursday. They deserve it, and so do I.

Why Not Go For The Gold?

Mom, as befits her new personality, has thrown us yet another curve ball.

You must know that all throughout her life this woman dyed her hair once, and that was before I was born some fifty-odd years ago. She was accused of "putting a rainch on her hay-uhr" by my paternal grandfather just once. After he picked himself up from the neighboring field he never mentioned it again.

She has constantly made fun of Sis and me for making sure our roots stay under cover, never understanding why we'd want to change the "beautiful natural color" that our hair is.

Mom has apparently not SEEN the "beautiful natural color" of our hair for several years, or she'd know it's mostly white by now.

However.

As you can see from the photos to the right, Mom has always said no to the peroxide. No to Miss Clairol, no to L'Oreal, no to Henna, no to any and everything that might smack of anything other than the original color God gave her.

Until last Friday.

Last Friday she informed me in no uncertain terms that she was going to the beauty shop at the rehab center and she was going to have Sue, the girl there, color her hair a bright copper.

Yes, folks, welcome to the latest edition of My Mother The Floozie.

Her old hairdresser called Saturday to see how she's doing, and I had to drop the bomb on her.

"Uh, Helen? Ah...Mom's getting her hair dyed a copper color next Friday. I just thought you'd like to know."

A thud sounds as Helen's jaw drops to the ground.

"Helen?? Are you there? Are you OK???"

"YOU HAVE GOT TO BE KIDDING ME!!! SHE WOULD NEVER LET ME EVEN TALK ABOUT DYEING HER HAIR, AND I DID IT FOR OVER 30 YEARS!!!"

The crazy hits hard, folks, and the crazy hits deep. It now seems as though she has a "What the heck? I might as well try it. What can it hurt? Looks fun!" kind of attitude about things she can control, whether that's laying her head down in a plate of spaghetti because she's tired, announcing she has to go to the bathroom in the middle of a meal, or dyeing her hair. The next thing she wants to do is get one of those scooters with the racing stripes down the sides.

And what a sight THAT will be. I'm wondering if we should be getting her a matching helmet, or if we should just let those copper locks act as a beacon for anyone in her way.

I'll be sure to post photos after the dye job. It's something you won't want to miss!

Makin' Momma Happy

Today Sis and I discussed the Mom Situation, and decided she needs more to do.

With her state of mind the way it is, she doesn't enjoy watching television. She doesn't read books, listen to music or converse with other residents unless they start up a conversation with her. Even then it's hard to tell what she'll say. All her therapy is done in the morning, and all she has to do for the rest of the day is sleep, eat, and think about anything that comes into her head, no matter how bizarre it may be. And sometimes it can be pretty dadgum bizarre.

Sis and I decided she needs some distraction, particularly in the afternoons when she has nothing to do.

Why waste all that valuable time? She has three hours, more or less, of therapy in the morning. Why not expand her therapy to include the afternoon as well? If she can't withstand the physical therapy, she can surely withstand the cognitive therapy, and it would give her something to do to occupy her mind.

I called her doctor today and he agreed it was a good idea. All I have to do now is mention it to the head nurse at the rehab center and get her to put the plan in motion.

We're hoping this will help Mom be happier while aiding her recovery.

Because everyone knows, if Momma ain't happy, ain't nobody happy.

Sometimes It's Just Too Much

Tonight The Boy and I went to the rehab center. It was not a good night.

As we walked in we saw Mom sitting in her wheelchair in the common area. She had been crying. And it only got worse from there.

She'd had some weird dreams about The Boy, Cutie, and one of the aides at the center, and everything was all mixed up in her mind. She was convinced The Boy had disowned her as his grandmother, and she wept openly because that hurt her so much. She thought the aide was the real father of Cutie, and even told him he was an adopted grandson-in-law.

Which is curious, because he'd have to be married to my daughter-in-law to be Cutie's father. But there is no reason in the stroke-damaged mind.

She spoke of the pork roast she'd put in the convection oven, and told me to be sure to check on it or it would overcook. She told me about a nurse she threatened to "cold cock" if the nurse didn't treat her with more respect. She remembered and then didn't remember and then did remember almost everything we talked about.

And then it all became too much for me.

I lost it. Bawled my eyes out right there in her room. And she couldn't understand why.

I couldn't help it. I just kept thinking that I wished she would just be MOM again for five minutes. Just five minutes. Just so I'd know she was still there; still Mom somewhere deep in that damaged brain of hers.

I want so much to believe there is still a chance she will be Mom again instead of this person she's become - this monotone, repetitive, narcissistic, hallucinogenic person she now is - but I honestly don't know if that's a possibility. The doctors have said her brain is still healing and it will take a long time, up to a year, for that to be complete. The carotid surgeries may or may not help. The surgeon and neurologist said they do help in about 50% of the cases.

Which means in 50% of the cases they do not.

What if she remains this way forever? Will she be able to live in an assisted living apartment by herself with a compromised mental capacity? It will be hard enough with a compromised physical capacity. How will she remember all the things she needs to remember in order to transfer herself from the bed to the wheelchair, from the wheelchair to the toilet, etc.? What about the terrible nightmares and awful dreams that she believes to be reality?

What kind of life is this for her?

OK, God. Once again I'm giving this to You. I can't do this by myself. She was Yours long before I came along, and she'll be Yours long after I'm gone. You have The Plan. You know how the story plays out and what is best for her. Your Will be done.

Amen.

There's More Than Enough Crazy To Go Around. Feel Free To Help Yourself.

Son and family came in to see Mom this weekend, and she loved every minute of it. They were able to visit both Saturday and Sunday before leaving town. During that time Cutie got plenty of quality time with her great-grandmother, and Mom couldn't have been happier.

Then today she promptly forgot about the whole visit and asked why Son and DIL and Cutie hadn't come to see her.

Then half an hour later she told me how much she loved having Cutie snuggle up to her in her bed to say goodbye before they left.

And then she went on to talk about the wonderful reception we'd had with the barbequed meat, beans and potato chips. She told me she thought it went so well even though there were about 100 people there. She was sorry she didn't get to eat with the rest of the family, but had to eat with the ladies at her table in the dining room. And why did the caterer send those sliced potatoes instead of the potato salad she ordered?

Uh, Mom? Brain fart.

"No it isn't. We had the party..."

No, Mom. Your birthday is next week. That's when we'll have the barbeque. I promise.

"But I ate two sandwiches..."

That was at dinner last night. The rehab center served barbeque sandwiches. That's why the potatoes weren't what you thought you ordered.

"I thought you said Son was coming in this weekend. He never did come to see me...."

Sigh.

In Which I Take The Day Off

Son and his family were in town today, so I took the day off.

I did not go to the rehab center. I went out for coffee in the morning and ended up sleeping most of the rest of the day due to a migraine, but it was all good. I needed the day. Truly I did.

Since Mom is back at rehab, Sis and I are trading off days again. She was there this morning, Son was there this afternoon, and I'll be there with Son and family tomorrow. Hopefully it will all be good.

For now, I'm continuing the rest of the rest.

Reining Her In

Mom was discharged from the hospital today.

Sis and I met with her doctor at zero-dawn-thirty and had quite a talk with him about everything you can imagine. I don't think I've mentioned before that her doctor is an old high school friend of mine and a deacon in Sis' church, so we're well acquainted. We think a lot of him personally, his ability, and his commitment to God. He spent a good amount of time with us and answered all of the questions we put to him to our satisfaction.

Even after we threatened to smack him for making us get up so early.

They are not going to do the camera swallow. From what we can gather, it is likely there was a weak place in the wall of Mom's colon or small intestine that bled out when her blood became too thin, and that was why her hemoglobin went so low. When the blood thickened back up to where it should have been, the weak spot probably healed over, which may be why it couldn't be found.

Or not.

At any rate, she's not bleeding now.

The vascular surgeon was also in today before Mom was discharged. Let me tell you how blessed we are. During our talk with him we brought up the fact that Mom was afraid the carotid surgery would bring on another stroke. He assured her that the risk of stroke was less than 1%, and she would have a much higher chance of having another stroke if she didn't have the surgery. Ultimately though, he said it was in God's hands. He was just an instrument for God to work through.

Oh yeah. That's the kind of doctor we LIKE.

After she was discharged we took Mom back in her car to the rehab center, but took our time getting there. We stopped for a chocolate shake and took the scenic route, and I think she enjoyed the ride. She's back in the same room in the same bed she was before in the same rehab center, so we hope she'll be less confused. She took to the same wheelchair she had before like it was an old horse she'd ridden for years.

They will be doing daily blood tests on Mom now to be sure her levels stay where they should. Hopefully we won't have to go through this again for a very long time.

Sis and I did notice how much we've been babying her lately. We plan to use a little more "tough love" in order to get her to be more self-reliant. The more she does for herself, the better. We want her as "on her own" as she can get as soon as she can get there!

We left the rehab center before dinner, and I spent the evening with my family - something I haven't been able to do in over a week. Every night at the hospital is wearing, both physically and emotionally.

It's time to let go a bit. Son, DIL and Cutie are coming in to town tomorrow to see her, so I may just let them take the reins for the day.

There are more than enough reins to go around.

Frankly, My Dear, She WILL Swallow A Cam

Praise God from Whom all blessings flow....

They were FINALLY able to do the full small bowel test on Mom today. The results were completely normal. No ulcers, no perforations. We are both blessed and perplexed at the same time. On the one hand, we're so very happy nothing was found, and on the other hand, we wish they would have found some reason why Mom's hemoglobin varies from 10.5 to 11.5 and why she has blood in her stool.

Mom has threatened bodily harm to the next person to come within ten yards of her with anything resembling laxative, and I do believe she could do some major damage.

Tomorrow we're hoping they will do the test where Mom swallows a camera the size of a capsule that will record 8 hours of photos of her insides, one every 30 seconds. That should give them a better idea of what is truly going on and if there is still a cause for concern.

In the meantime, there are rumors of discharge in the air. Sis and I will be meeting with Mom's doctor tomorrow morning at the crack of dawn to discuss things. Ideally, we'd like for her to go to the rehab unit at the hospital and stay there until her surgery on the 30th, but that all depends on what the doctor thinks. We'll cross that bridge tomorrow.

Because, after all, tomorrow is another day.

Same Song, Third Verse

It didn't happen again today.

The stupid barium has decided to take up semi-permanent residence inside Mom, so she was unable to have the test again.

Another day of waiting.

Another day of laxatives.

Another day of a bottom which has become similar to raw meat from All The Pooping.

I feel so sorry for her. And felt so sorry for her even as I gave her a drink of laxative alternated with a drink of Pepsi until the whole bottle was gone.

So tomorrow we'll try again.

On a more positive note, I'll share this; I bought a footlong Subway sandwich for $5.00 yesterday and ate half of it on the way to the hospital. I stored the other half in the refrigerator on Mom's floor so I could have it for lunch today when I got off work. I've been skipping lunch at work to leave early for the hospital.

Today when I got to the hospital I stopped at the fridge and picked up my sandwich before going to Mom's room. She'd had lunch a couple of hours before I got there. Usually she's so "stuffed" she doesn't want her dinner, but tonight must have been different. I unwrapped the sandwich and took a bite, then saw the longing in her eyes. I asked her if she wanted a bite, and she took it from me. We traded off for a couple of bites, but then she decided I'd had enough and she ate the rest of the whole thing!

Note to self: EVERYONE gets tired of hospital food. Bring Mom take-out!

An Update From The Past Few Days

Let's see, where were we?

Ah yes, the colonoscopy.

It went well. They did it on Sunday, something they don't do unless it's almost a dire situation. Since they didn't find anything, a small bowel barium test was scheduled for Monday, to be followed by Mom swallowing a tiny camera which would take photos of her insides every 30 seconds until it was eliminated.

I spent the night with her Sunday night, and Monday morning they came to get her for the test. They had me wait in her room. About an hour later she was back, which confused me since I'd been told the test would take up to eight hours to complete. It was then I found out they had done the wrong test. Instead of the barium swallow on the full small bowel with the camera, they did a "modified" barium swallow only. They were able to reschedule the full test, but when they came to pick her up for it, her blood pressure was 200/80 - much too high for her to be moved. She was given medication to lower the pressure and it did work, but too late for the test. It was rescheduled for today.

Bright and early today she went to have the test done. Since I had to work and couldn't be there, I called around 11 a.m. to see how things were going. Her nurse answered and told me she was already back in her room because they were unable to do the test today. When I asked why, he said it was because of the barium that was now in her colon that was left over from the botched test yesterday.

I was some kind of angry.

So that meant more laxatives for this poor woman who has done nothing but poop for the past almost four days. And tomorrow morning there may be more than that, if they feel all the barium is not gone.

All this to find out where she is bleeding from so they can do surgery and cause more pain, which will hopefully end up with her being healthier while driving us crazier.

The good news is that the fluid which was found on her lungs that caused her to have breathing problems is almost all gone. She is no longer on oxygen.

Well, not that she really was anyway since she kept taking it off, but you get the idea.

Tonight Mom was more lucid than she's been in a while. That is, except for telling me that she knows I've been sleeping with one of the doctors who takes care of her because she saw us when I spent the night Sunday night.

Because, you know, I make a habit of having illicit encounters of that sort in front of my mother and all.

You just gotta laugh.

And The Hits Just Keep Rolling In

When last we left the story, Mom had been given two units of blood and two of plasma. That turned into four units of blood and two of plasma before they were able to get her hemoglobin back up to an acceptable 11.5 instead of the 4 she came in with. Earlier today it dropped to 10, but went back up to 10.5 later on.

The doctor ordered a colonoscopy. In order to accomplish that, Mom had to drink a full gallon of a foul concoction called "Go Lightly" which was supposed to make her "go" - but not necessarily lightly. She had to drink a full 8 ounces every 15 minutes until it was gone. She went at it full tilt for the first half-gallon, but after that she was done.

Finished.

Kaput.

She refused any more, regardless of pleading, threats, guilt trips or whining. So the nurses took a different route and gave her a more concentrated form. She only had to drink two 10-oz bottles of this stuff, one hour apart. She got about half of the first bottle down and refused the rest. So this morning they gave her the super super concentrated stuff. She downed it like a good girl, followed it with the water she was supposed to have, and we waited.

Unfortunately, it was too late to have to colonoscopy done today. So she has to go through the same procedure again tomorrow morning in hopes of being able to get this over with tomorrow. Each minute she's off of the blood thinner is a risk for another stroke or heart attack, so we need to get this procedure done soon.

In addition, last night she began having some problems breathing. She was supposed to wear oxygen, but every time the nurses or I would check on her she'd taken it off. Finally, around 3 a.m., I lost patience with her and asked her why she was trying so hard to die when everyone around her was working so hard to keep her alive. She finally put the oxygen back on and left it alone.

Later in the morning the respiratory therapist came in to check her oxygen levels and cut her down to one liter of oxygen. Still later she came back and removed it completely. Five minutes later Mom complained of being unable to breathe. I hit the call button and rushed out to the nurses' desk to get someone to help. They were able to get her back on oxygen and breathing well right away.

But it scared me. What if one of us hadn't been there? She wasn't clear enough to hit the button to call the nurse. She didn't even tell me anything was wrong until I asked.

Sis is with her tonight while I try to get some rest. I'll be there early tomorrow morning to take over so Sis can go home and rest before the colonoscopy. Please pray this part is over quickly, Mom heals quickly, and we can move on to the next challenge.

Because if we've learned anything through this, it's that we know there will be more challenges to come.

Just When We Thought We Were Making Some Headway, The Second Shoe Drops

Around 12:30 p.m. today I got a phone call from the rehab center. They were taking Mom by ambulance to the hospital.

Her hemoglobin, which was low to begin with, had dropped to a dangerous level. Normal hemoglobin is around 11 to 14. Mom's was 4.

Due to the medication she is on her clotting factor was also wacky. It should be around 1, but hers was around 10. That meant her blood was extremely thin. Way too thin.

I called Sis and met her at the hospital. Mom soon joined us, and we began the long journey of the day. Nurses had trouble drawing any blood because of the problems Mom was having. The lab techs had to be called in to find a vein that would actually produce enough blood for tests. IVs were started for blood, plasma, and other fluids. Mom was given vitamin K to help her blood's ability to clot. Two units each of blood and plasma were hung.

Mom pinked up a bit from the sheet-white she'd been when she came in.

She was admitted to the hospital and put into a room. Clear liquids only, some of her medicines were stopped. She started having muscle spasms in her back and shoulders, then her legs and feet. The nurse gave her two Vicodin to ease the pain.

Sis and I thought we'd be safe to steal away and grab something to eat around 9:30 p.m., so we told Mom we'd be right back. We thought she'd be out like a light by the time we got back. Instead, as we rounded the corner to her room, we found her writhing in pain, almost halfway out of her bed! Three of the four side rails were up on the bed, but she'd managed to work herself almost out of bed on the fourth rail. Her back was cramping so badly that she was crying out in pain, but she was unable to find the call button for the nurse. If we'd been any later coming back from the cafeteria she would've been on the floor.

We found out that each nurse has five patients tonight when they usually only have three. The hospital is short of help, and they are making due with the nurses they have. That's the reason Sis decided to spend the night at the hospital tonight.

Tomorrow morning I'll be there to see the doctor, an old high school friend, to see what he has to say about Mom's condition and treatment plan. We're hoping she can be treated and get well quickly, because the days following a stroke are precious in the sight of rehab. We don't want to lose any possible gain.

If you get a moment, please pray that the doctors will be able to find the source of Mom's bleeding and stop it, and that her medication can be regulated with no further problems.

And we'll hope this is the last shoe to drop for a while.

What Alien Being Has Overtaken My Mother's Mind?

Stubborn never dies. That's a given.

But in the brain-injured world, other things do.

Someone who was extremely modest, had a high tolerance for pain, never complained, never wanted any type of medication for anything, stayed up until the wee hours of the morning, never napped, and was never afraid of hard work can turn into the exact opposite of all those things in the blink of an eye. Mom was that person before, and is that opposite now.

Tonight I arrived at the rehab center right at dinner time. I came as soon as I could after work, but thought I'd wait to see how she did with dinner before I announced my arrival. Unfortunately, she saw me walk in the door so the jig was up. What followed could only be described as a tantrum.

They were serving spaghetti with meat sauce tonight with a side of spinach. Mom doesn't like spaghetti and refused to eat it or anything else offered. She also refused to even try the spinach. When I tried to get her to eat, she laid her head on the table and kept it there. I got one bite down her before she started complaining about her legs hurting and asking if I'd take her back to her room. When I refused, telling her she had to eat more before that would happen, she tried to lay her head back on the table again, this time in her spaghetti. We went back and forth like this several times. I ended up moving the plate and letting her lay her head on the table.

It was a struggle. Finally I gave in and we went back to her room. As soon as I got her back into bed her legs miraculously stopped hurting, her disposition improved, and she wanted ice cream. CHOCOLATE ice cream.

She reminded me of the typical two-year-old. And my patience ran a bit thin, I'll admit.

I know she's had a stroke. I know she's not herself either physically or mentally. But I also know she's playing games here, and I don't know what to do to about it.

Advice is always appreciated, as are prayers. Both for Mom as well as for Sis and me as we deal with the day-to-day realities of this.

Sometimes it just ain't fun.

The Hand Of God Is Showing ALL OVER This

A little over a week ago I went shopping for a place for Mom to live after she completed rehab. I looked at several different types of places, from nursing homes to retirement apartments. Not knowing how much function she would eventually have or when she'd have it however, it was hard to know just what to look for. I think I needed to get an idea of what was out there more than anything else.

One of the places I went to didn't particularly impress me the first time. It was an assisted living apartment complex situated next to the nursing home where my grandmother died. Unfortunately, it also has the same name as the nursing home did way back then, which lent nothing to the allure. However, the ownership of both it and the nursing home has changed hands since Grandma passed away. Both now have separate owners. While the nursing home still holds a poor reputation, the apartment complex does not.

Sis and I had all but decided on a different retirement complex for Mom; one that had three gourmet meals a day, a kitchenette in the studio apartment, furnishings in the lobby areas straight out of some kind of magazine. It was upscale all the way. The only thing it lacked was practical nursing care. The "assisted" part of assisted living, so to speak. We'd have to pay extra for that. That wasn't so bad, but the fact that it is at least fifteen minutes away from us and thirty minutes away from Sis is bad.

Very bad indeed.

The more I thought about it, the more I thought it was too far away. We're having a hard enough time getting the grandkids to come and see Mom as far away as she is now, and she'd be even further away at this place. I didn't know what Sis was thinking, but I decided to go see the first place again just to make sure of my impressions. I hadn't had a real tour the first time, so I asked for one this time.

What I saw really opened my eyes. Yes, the hallways were a little dark, but they were dark in the ritzy place as well. Yes, the walls were painted a putrid color in the hallways, but each floor was a distinct color so that residents could tell if they were on the right floor. All the floors at the ritzy place were the same.

But what really impressed me was the apartment itself.

These apartments have been around for a while, so as each resident moves out the apartment is completely redone. Fresh paint, new carpeting, etc. When I was there before I saw only the studio apartment. It was little more than a very large bedroom with a bath. This time I saw a one-bedroom apartment, and I knew I'd found Mom's new home.

It doesn't have a kitchenette, but it does have a closet area that can hold a small refrigerator, coffee maker, toaster, microwave, etc. Frankly, with Mom's mental capacity at this time, she doesn't need to be cooking. Of course, we hope that will improve with the carotid surgery and time.

There's additional closet space, a fairly large living room that will hold most of her furniture, a fairly large bedroom, and a full bath with a handicapped-accessible shower. She'll be on a floor that is accessible to an outside exit for fire escape, so there will be no stairs to negotiate.

Round-the-clock nursing care is available, as is assistance with bathing, dressing, and anything else she needs. Medications are given out with meals, so if a resident doesn't show up for a meal they are checked up on immediately. During the night checks are done hourly.

There's a beauty shop in-house, a soda shop (free), an activity room, trips to Wal-Mart, bingo, manicures, exercise, and all other manner of activities, including church services and Bible studies.

But the best thing of all?

She will be less than 5 minutes from my house.

And when I told Sis about all of this she told me she'd already been thinking about it, she agreed with everything I said, she trusted my judgment implicitly, and she thought Mom should go there to live when she's done with rehab.

Now tell me God didn't have anything to do with that!

All we have to do now is get this woman through rehab and the surgeries, and we'll be cookin' with gas!

The Report Card

First of all, I am pleased to report we now have the Power of Attorney as well as the Power of Attorney for Health Care signed, sealed and delivered. The latter includes Mom's Living Will. In addition, we have a Beneficiary Deed to the house. The Will will be completed and signed tomorrow, meaning all of our legal ducks will be in a row.

We'll be able to legally handle all of Mom's financial affairs, including selling her house if we absolutely have to. If she should become incapacitated we can now make decisions regarding her health care. When she passes away forty years from now, there will be no question about the ownership of the house. And when the will is signed, the courts won't get anything.

After tomorrow I think I'll be heaving a BIG sigh of relief about all of that.

We had our first Family Council meeting with the new rehab center today. There were five of them and two of us until Mom got there.

Yes, MOM was a part of the Family Council about her own care.

And yea, verily, we were impressed.

All of the problems we had regarding her being neglected have been resolved. The nurse that has been on duty couldn't have been friendlier or more caring. When I asked him questions about her upcoming carotid surgery, he even made the effort to come back to her room with a nursing textbook to let me read more about it. Mom has been placed on a 30-minute check since she has problems finding the call button, which has been replaced with a larger call pad that is easier for her to find. Nurses are being proactive about her pain meds rather than waiting until her pain is out of control to give them to her. She's known as "Little Momma" to the aides on the floor, and she's named one of the aides "King Kong" because he's so big and strong.

During the Family Council it was brought up that Mom doesn't like to go to the dining room anymore to eat. When she was asked why, she said it was because she was afraid she would be left there again and not be able to get back to her room. The head of nursing promised her it would never happen again, and apologized to her for the one time it did happen - the day I found her there.

The head of the therapy department reported to us that Mom seems to be making improvements. Her left-side neglect is lessening. She's looking more toward her left side and noticing her left leg more. She has been spending time standing with a walker and in a stander, trying to regain strength and balance. She is improving in both. Occupational therapy is working with her to make sure she can eat by herself, as she tends to ignore a great deal of her plate due to her limited field of vision with the left-side neglect. She's improving there as well. Speech therapy is working with cognitive abilities, and again, she seems to be doing just fine.

You could have knocked me over with a feather.

If you'd asked me this weekend, I would have told you she was depressed, unable to stay awake, didn't want to eat, and refusing to cooperate. Guess she fooled me, huh? And I can't tell you how glad I was to be fooled!

I asked her what the difference was between this place and the hospital therapy. Her answer was that at the hospital you were always doing things the wrong way. At this rehab center you were praised and encouraged for what you did right.

I guess she can still teach me a thing or five.

The Hex, The Will, And The Earlobe

Sometimes you just have to laugh.

I emailed Sis last night, reiterating the importance of getting Mom's Power of Attorney for medical matters as well as one for her legal matters, her will, and her quit claim deed for the house so that we'd be prepared legally for any consequences that should take place. I'd mentioned it before, but Sis either forgot about it, was too busy to do anything about it, or was trying to ignore it.

Today I found out it was the third choice.

I spoke with her in person when she came in to bring Mom's laundry, telling her I had spoken with Mom's attorney about the documents in question and he agreed it was imperative we get them in order as soon as possible. I mentioned that this was legal stuff, not emotional stuff, and it had to be handled. I told her it couldn't be ignored. But sometimes the little kid in us takes over, and that's what Sis admitted to today.

She told me she had successfully avoided dealing with it so far, and she was comfortable ignoring it for the foreseeable future. I so related to that, but I also saw the practical side. We have to have these things taken care of because Mom could have another stroke at any time and become incapacitated. We need to have access to her funds to pay for her care, to her decision-making should she become unable to do so, and, God forbid, in the event of her death, her final wishes. We don't intend to utilize any of this until we absolutely have to, but we need to have it available when we do need it. Mom can make her own decisions up until the time she is unable to do so anymore.

Sis finally agreed to have the lawyer meet with Mom, but said she felt as though she was jinxing everything by doing the paperwork. As if by finalizing the legalities, she was signing Mom's death warrant. Even though we both know that's ridiculous, it does make things seem more final in a way, and neither of us likes it one bit. I think we'd both rather we never had to deal with anything like this.

Doesn't everyone in this position?

Meanwhile, back at the ranch, Mom had a few visitors today. One of the deacons from the church came and brought her communion. After taking it she promptly pronounced the wafer stale.

Did I mention she has become a bit more blunt since the stroke?

Her great-niece and family came to visit from Texas, as did a close friend and her husband from church. Unfortunately, she was asleep by the time the last friend arrived.

I am concerned that she does not seem to be eating as she should. In addition, she does not seem to have any energy or desire to work toward getting better. I worry about what the therapists are going to say in our family conference tomorrow. If she doesn't continue to show improvement, Medicare won't pay for her rehab care. I worry about her upcoming surgery to unblock her right carotid. Will it clear her mind at all, or will it make things worse due to the effects of the anesthetic?

I have to continually give this to God, admitting I am powerless over even the least detail. And yet it seems as often as I give it to Him, I end up taking it back to worry about once again. I know there is a lesson for all of us to learn in this, and my prayer is that we would learn quickly...that we would not have to be yanked up by the ears in order for God to get our attention.

Because these kinds of lessons aren't the least bit fun.

Gasket Repair - We'll See How It Holds

Last night at 10 p.m. the Head of All Nurses came to work.

At 10:01 she received a telephone call from me.

I explained our concerns with Mom's care from the time she entered the facility up to today. For the first time since I started complaining, someone in authority listened. Someone in authority apologized. Someone in authority acted as if they actually cared what happened.

And someone in authority promised to rectify all of my concerns.

I don't ever want to have another day like yesterday. I don't ever want to feel as helpless and without control as I did then. I don't ever want Mom to have to suffer because of neglect.

The thing that most broke my heart yesterday was when she said, "I know I was a bad person before and this is my punishment."

NO ONE should EVER have to feel that way. NO ONE.

EVER.

And Sis and I will do everything we can to make sure Mom never has to feel that way again.

Today is hard. Today is the first day I won't see her since that night she called us for help. But Sis and I have agreed to trade off days for our own mental health, and it's something I need to get used to. It was hard for her yesterday, so I know it will be hard for me today. But we both have family that needs us as well as having Mom. We have to balance out things so that neither is neglected.

And the balance may end up being very delicate indeed.

In Which I Go Off With A Bang

It was not a good day at the rehab center.

Oh, the therapy sessions went well in the morning, according to Mom. That was good. And lunch was OK. I brought her some creamed peas and new potatoes from her garden along with fresh green beans cooked with onion and ham. Unfortunately, I didn't cook the green beans long enough and she let me know about it.

What can I say? She's the cook in the family, not me.

After lunch I took her to her room and noticed the quilt I'd brought in the night before was missing. When I asked about it, I was told it got wet and was in the soiled clothing bin. I asked Mom how it had gotten wet, and she told me this story...

It seems as though she was in a lot of pain. Her hip has been bothering her after therapy quite a bit, as well as her shoulders. Her tailbone gets sore from sitting in the wheelchair as well. Early this morning she needed some pain medication and pressed what she thought was the call button. Now, whether or not she actually got the call button is up for grabs, because she has a hard time telling where it is and how to use it half the time.

She told me she waited what seemed like forever, and when it became evident no one was going to come and help her, she decided to take matters into her own hands. She kicked the tray table next to her bed with her right foot, sending her water pitcher and everything else on it flying. Apparently it made enough noise to get someone in there. She asked that person for pain meds, but never got them.

After lunch she did.

I stayed with her until she dozed off for a nap, then went to do my part-time job. I called the rehab center to ask if they would check on her every half-hour or so to be sure she was OK, especially after the pain medication episode. What I got on the other end of the phone was a defensive, snotty nurse who told me there were 36 patients in the unit, and they didn't have time to check on Mom that often. They told me they'd check on her every two hours.

I was pissed.

I wasn't going to go back to the rehab center tonight, but I had this feeling that I needed to after the evening meal. Mom was supposed to have gotten her hair done, and I wanted to make sure it was completed and that she was settled in for the night. I walked in and went straight to her room, but she wasn't there.

She was sitting in the dining room. She'd been left there, along with another lady, and forgotten.

When I asked the person who was cleaning up the dishes where the aides were, she told me they weren't supposed to leave patients alone and she didn't know where they were. Mom said she'd been asking everyone that passed by to help her get back to her room, but no one would listen to her or help her.

I took hold of her wheelchair and went directly to the nurses desk, where the nurse and CNA sat gabbing. I told the nurse I was not happy and why. She got very defensive and uppity with me, and I just reiterated my unhappiness at the way Mom was being treated. I told her Mom needed pain medicine for her tailbone since she'd been sitting so long, and I'd like to have an aide meet me in Mom's room to help me get her into bed. She said she'd send one back.

Forty-five minutes later, when I'd done all I could do by myself to get Mom ready for bed and she'd had her medicine, I went out to the common area to find the aides eating ice cream with the other residents. The nurse was gone. No one had mentioned to the aides that we needed any help.

I blew a gasket.

I had the supervisor on duty call the nursing manager, and I gave her an ear full. This after forty-five minutes of apologizing to Mom and crying because I didn't know what to do to make it right for her.

She deserves so much better than this.

And I feel so helpless.

On a positive note, one of the aides promised me she'd put Mom on a 30-minute watch until 11 p.m. That way, if she wakes up and is in pain before then, she can get medication. That made me feel a bit better.

But as for the other nurse? I'm out for blood.

The Fireworks Don't Start Before Seven

Today was Sis' day with Mom, but I made a short trip up there to deliver laundry and a clock for her room. She's been asking why they took the clock away, but doesn't realize the clock was in her room at the hospital, not her room at the rehab facility.

Mom wants to go see the fireworks tomorrow night, but she tires out so easily that she's in her nightgown and in bed most nights by 7 p.m. Tonight she could barely keep her eyes open long enough to tell us goodbye. In years past we've always made a quart of homemade banana ice cream and taken it, along with her and my mother-in-law, out to watch the fireworks. It just won't be the same this year.

The kids and my husband are going to our older daughter's house in the country so my youngest son can set off fireworks. He lives for the Fourth of July every year, and has purchased immense amounts of fireworks to blow up. I told my husband that I'd really like for them to go and have a good time, but I'd just like to veg out at home after taking Mom some ice cream. I don't feel like socializing. Frankly, I'm exhausted from the past weeks, and I need some quiet time alone to relax and renew.

Mom was moved to her bed by the window today since her roommate was discharged. She ate in the dining room with the other patients, and went to therapy for the first time. She couldn't tell me much about therapy except that she sat on a mat. Sis told me that before she got there and before they figured out Mom needed assistance to eat, she was placed at a table with another lady who was as bad off as she is. The other lady tried to help Mom eat, and ended up spearing her in the ear with a fork.

I don't think we'll have a problem with getting assistance at mealtime again.

For the most part we're very pleased with this rehab center. The aides seem to be genuinely caring people who want the best for the people who are there.

And I hope it continues this way.

And A Tough Day Was Had By All

We were supposed to be at the new rehab place by 10 a.m.

We'd planned to take Mom for a drive before getting there, being as she's spent so much time in the hospital lately. We thought she'd enjoy it.

We got to the hospital in plenty of time. The hospital knew we were coming, and knew what time we were supposed to be at the new place. And still they kept us there until after 10:30 a.m. waiting on paperwork.

By that time Mom was so tired that all she wanted to do was get into her new bed, wherever it was. We drove almost straight to the rehab center and got her settled. Then we signed forty million pieces of paper and waited for copies to be made.

Sis thought she was actually going to get back to work today, but I took the day off. Finally, in mid-afternoon, we left. I took Sis home, then went to an appointment I had. I checked back in with Mom to take her to her first dining room dinner. The food was certainly not spectacular, but at least she had the opportunity to socialize. After dinner was over and she was back in bed I left for the night.

It was hard leaving her there. I'm praying she doesn't get too disoriented, that she makes friends easily, and that she blows away the therapists with her progress. Most of all, I pray she becomes all she can while she's there.

Only time will tell.

The Day Was Better, As Was The Mood

The mood was much improved today when I got to the room after work. It might have been because Mom was asleep after her grueling day of therapy. :)

We had a good talk, she and I. Her mind seems much more clear when there is only one person for her to deal with. We spoke about her new rehab center and she told me she was impressed with it when her friends were there for various recoveries after their illnesses, so she had no qualms about going there. That took a load off of my mind.

She is concerned about finances, but has no need to be at this point. Medicare and her tie-in plan will handle all of her rehab cost for the first 100 days, and we're hopeful she will show much improvement during that time. We'll deal with extended rehab should the need arise at a later date.

We also discussed assisted care apartments, condos, live-in help, and retirement community living among other things. She needs to be a decision maker in her future, so it's only fair we discuss these things with her. And it was particularly good to do so today because she was so lucid.

At least until dinner came and she asked why she was having mashed potatoes for breakfast.

Tomorrow the doctor has OK'd us to drive her to the rehab center. We are supposed to have her there by 10 a.m. We plan to drive around for a while, taking our time getting there. The only risk to her is the fact that she is still a bit unsteady sitting up straight and tends to lean to the left. If one of us drives while the other sits in the back seat with her, we can keep her propped up just fine.

The one problem is that she will want to go by the house. She's already told me she wants to go inside, but there's no way Sis and I can hoist her out of the car and into the house, much less out of the house and back into the car, so she'll have to be content with a drive-by. The Boy has not been by to mow the grass this week since he's been working at the church fireworks stand, so it looks a little shaggy. I'm sure she'll have something to say about that.

We told her today about the new visiting arrangements Sis and I had come up with. She agreed it was too far for both of us to drive every day, and thought the every-other-day except Friday sounded good. We told her we'd keep that up until we thought she was settled and making friends, then maybe drop to one day a week and one day a weekend so we could have some time for our families as well. Again, she agreed that was the thing to do.

So why do I feel so guilty?

I finally have underwear in the wash, along with other items of clothing. Hopefully I'll get up in time to shower before leaving for the hospital.

First impressions are everything, you know.

If you happen to think about it, prayer would be appreciated for Mom as she tries to settle into her new surroundings - the fifth move she's made in less than three weeks. Also for her to thrive in therapy and to make new friends easily.

And with that, I'm going to bed.

Of Tests And Docs And Irrational Things

Today Mom had a cardiac chemical stress test to see if her heart needed surgery. The test was negative, meaning there were no blockages large enough to warrant either a cardiac catheter to insert one or more stents, or bypass surgery.

It also means she will be able to withstand surgery to clear out her right carotid in a couple of weeks. Good news.

Of course, before we found out the results, a nurse from the cardiologist's office had to come by and check Mom out before telling us she didn't know anything yet. Then the cardiologist did the same thing. Later that day the cardiologist came back again to give us the news.

Medicare? Be forewarned. I see BIG bills coming your way.

More good news; her main doctor said her test results are good enough to discontinue the shot of blood thinner she has been getting in the stomach in addition to her Coumadin, and she can start taking the daily aspirin orally instead of rectally. Big pluses for her.

On the bad side, blood has been found in her stool. This could be a complication from the blood thinners, or it could be something more serious. We've been advised to wait until the second carotid surgery to have the colonoscopy done to find out what may or may not be wrong, so we will wait.

The speech therapist was in today. Mom called her three different names during the session, only one of which was right. However, even as tired as she was from the physical therapy session she'd just had, she impressed the therapist with how alert she was, her cooperation, and her improvement over the last session. Mom graduated to being able to drink regular liquids like coffee and water, rather than the thickened liquids she's had to drink recently. She was happy to hear that.

The occupational therapist was pleased as well, commenting how much Mom had improved just over the weekend. He said she was able to help in getting herself washed and dressed, and seemed much stronger.

What aliens have kidnapped the people we met with last Friday, who gave us almost no hope???

After the occupational therapist was done with Mom she had to take a two-hour nap to recuperate. She woke up in time to eat dinner, and she was in a foul mood.

I'm hoping this phase won't last long. I'm hoping that when we move her to the new rehab facility on Wednesday we'll be over this part.

In the meantime, the pedicure and Sangria worked wonders.

The Day of Rest, Wasn't

Normally you'd see my husband and I going to church on a Saturday night, being as he works the late-night shift and sleeps Sunday mornings. However, for the past couple of weeks we haven't had the chance to go at all. We've been too worried about Mom, and I've spent most of my time at the hospital while he's been holding down the fort at home.

Today was no different.

I went to the hospital around 9 a.m. and stayed there until 6:30 p.m. It made for a very, very long day. When I got home tonight I was absolutely exhausted. Thankfully, Husband had dinner on the table in nothing flat. He's been a real rock for me these past weeks, and I so appreciate him stepping up to the plate (so to speak) in the fixing dinner area.

Mom is very demanding, both mentally and physically. She talks almost constantly, asking questions we've answered over and over again. She wants ice from the machine down the hall. She wants her back rubbed or her neck rubbed. She needs to be taken to the toilet. She is in pain and needs medication. She needs help eating and drinking. She needs to be repositioned in bed. She is confused about the time, who has been there and who hasn't, who people actually are, and sometimes where she actually is.

Please know I don't begrudge her anything. I would do anything she needed and more. I'm just happy to have her here.

But I'm turning into a zombie.

Sis and I have decided that rather than have both of us spend great amounts of time with her all day long once she moves into the new rehab facility, we're going to have to break things up. I'll visit after work on Monday and Wednesday, and Sis will take Tuesday and Thursday. Then she'll take Saturday and I'll take Sunday, giving both of us time to attend church. Hopefully, this will also give us time with our families as well...something that has been sorely lacking since the heart attack/stroke happened.

Although I feel extremely guilty about this, I don't know what else to do. The new facility is a 20-minute drive from home. As we speak I have no clean underwear ( I know, too much information) because I haven't had time to do laundry. I can't remember the last time I cooked a meal for the family to sit down and enjoy, and I am so very sick of hospital food that I could scream. I'm exhausted even after eight hours of sleep.

And the hospital thing ain't over yet.

Tomorrow Mom will have a chemical stress test on her heart. Depending on the outcome of that, she may be undergoing surgery on the right carotid in two weeks.

So tomorrow, after the stress test is over, I'm getting a pedicure and drinking Sangria.

I think that's the only logical way to handle all the stress.

Well, that and the Xanax. It helps, too. :O)

And So It Began

June 12, 2008

A day I won't soon forget. Neither will I forget June 13, 2008, or the day of Mom's stroke, June 14, 2008. The details of those days are foggy at best. Exhaustion, grief, worry, fear, and an extreme sense of loss dominated that time. Now, two weeks post-stroke, these are the things I remember.

That Thursday night around 11:30 p.m. the phone rang. Both my husband and I wondered who on earth would be calling that late as he answered the call. I heard him say, "What's wrong?" and then, "Who is this?" before he said, "Hang on, we'll be right there!"

It was my mother. She was having trouble breathing. So much so that she could barely talk to let my husband know.

We rushed out of the house, calling 911 as we drove. We made record time to her house, and entered to find her an ashen gray color. Every breath sounded as if it came through water because her lungs were filled with fluid.

And I was scared to death.

The ambulance, thank God, showed up a couple of minutes after we did. They quickly went to work providing her with oxygen through a CPAP mask, which forced the oxygen into the lung space she had left. We were assured they would meet us at the hospital shortly after we arrived, and they didn't feel as though they'd need to use the siren and lights. I called my sister to have her meet us there.

We arrived a few minutes ahead of the ambulance, but contrary to what we were told, there were full sirens and lights running. They asked us to wait in the waiting room until the preliminary work was done, then they'd call us back.

My stomach was in knots. I had never been this scared in my life. My sister and I, sitting in the waiting room together, exibited what must be a genetic trait. Both of us had trouble controlling our bouncing knees as we waited to hear from the doctor.

And so we prayed.

I had to use the restroom, and being the directionally challenged woman we all know me to be, got lost on the way back. I ended up in my mother's room in the ER, and found she'd been put on a respirator.

My mother is 74 years old.

She was moved to CICU, and to tell you the truth, I don't remember a whole lot about the rest of that day. I know I was awake for a full 24 hours, and I remember that Sis had to be forced to go home and rest. As for the rest of the first couple of days, it's a blur.

Mom was on the respirator for a few days and I noticed that while her legs and right arm moved constantly, her left hand didn't seem to move. Since she's left-handed we were all especially concerned. I suspected that in addition to the heart attack we knew she'd had there might have been a stroke. However, a CT scan showed no clots or bleeding, so a stroke was ruled out. Tests were done to determine if there was a clot in her lungs. Nothing there. She came off of the respirator, but wouldn't wake up.

Then a very alert ICU nurse did an assessment of her on shift change. The left side of her face was drooping, her pupils weren't the same size. There were all the classic symptoms of the stroke I feared to begin with. Another CT scan was done and it was confirmed.

A massive stroke affecting 3/4 of the right side of her brain.

We still couldn't get her to wake up, and thought she would stay that way. Another heart attack or stroke was almost a certainty, and with that she would die. And that was how the story would go. My mother was going to die. I could say it, but it was like a very, very bad dream that I didn't want to believe.

Everyone went in, one by one, to say goodbye. Children, grandchildren, great-grandchild. Each had their turn.

I don't know how we got through that night, but we did. More importantly, so did she.

She woke up eventually. She was alive, and that was all that mattered.

She was moved from ICU to a room on the Cardiac floor, due to the heart attack. The doctors started Coumadin, Protonix, aspirin, and other drugs to help her maintain. Speech therapists came in, occupational and physical therapists came in, all to help in their own ways.

The stroke had certainly done its damage. Not only was Mom's speech affected somewhat, but her mental ability and even the personality that made her Mom seemed to have changed. She is now confused and unsure of herself, she hallucinates, and yet she is proud. Too proud to admit there are things she can't put together with their names, letters she doesn't recognize, and even a whole left side she is completely ignoring now. Her left, completely paralyzed, side.

Time passed, and she was moved to a med/surg floor without cardiac monitoring in order to prepare for her move to the Rehab floor.

In order for her to stay on the Rehab floor, she had to be able to complete three hours of intensive therapy, half an hour at a time, every day. To give her credit, Mom stuck with it for four days, but she struggled every day. The therapists would finish one session and find it hard to keep her awake for the next because she was so exhausted. Her pride kept getting in the way of the speech therapy, so her attitude was judged.

Friday the 27th of June, my sister and I sat down with the occupational therapist, the physical therapist, the speech therapist and a social worker. On a scale of one to five with five being the most improvement, Mom was placed at a one by all three therapists. We were told that if they were to judge the remainder of her life by how she had been able to improve over the past four days, each of them would have her placed in an "extended care" setting...a nursing home.

They had given up on her.

So next week, we'll be taking a different approach. We'll be giving up on THEM.

Whether or not Mom gets better is not the point. The point is that at least she will have a fighting chance with people who will work with her as she is until she is able to get better - if she ever is - without giving up. Rather than judge her for what she is unable to do, they will take the time to help her become all she can be in her own time.

And that's all we can ask.