Post-Stroke

One Year Later

2009-11-30T15:29:00.002-06:00

Yesterday marked the one-year anniversary of Mom's death.

This is not a year I would ever go through willingly again. This is not a year I would ever wish on anyone else. This has been, in my opinion, a year of lessening degrees of hell and learning to live within them.

Does time make it better? Unquestionably, yes. This time last year my heart was torn in two. During the year I've struggled with thoughts of anger, depression, hopelessness - grief at its finest. And slowly, painfully, my heart has knit back together - in a fashion. It still has very sore areas and a huge scar, but it is healing. It will never be the same as it was.

My relationship with God has suffered as well. We weren't on speaking terms for a long, long time. I couldn't figure out why He had allowed this to happen - what purpose there was in Mom's suffering and death. Sure, Mom was no saint and neither am I. But does that mean she had to die because of it?

That was a hard one to work out. And to tell you the truth, I'm still working on it. God? He's waiting for me to finally find the answer and come back. Or not to find the answer and to trust Him anyway. All I can say is that it's taking the hurt a long time to heal there as well.

It was also a year of firsts. I don't mean that in a totally negative way, either. Yes, there were the birthdays and holidays we missed with Mom. But there was also the day I was going through my voicemail at work and discovered a message she left me just before my birthday in 2008. In it, she was telling me my birthday cake was ready to be picked up. It was her voice. A gift.

She made it possible for all of our bills to be paid off. What a first that was! Because of her, my sister and I are now closer than we've been in years. We make it a point to meet for coffee once every two weeks. We call and email each other. We're still as different as night and day, but the world needs both of us to go round.

Yesterday I made it a point to talk to Mom and to God. I poured out my hurting heart to them both, and told them it's time to get on with life. And then I told Mom a secret.

She's going to be a great-grandmother again.

Oh, how she would have loved that!

I hope, somehow, she knows.

A Birthday Remembrance and Update

2009-07-29T11:43:00.002-05:00

Today would be Mom's 76th birthday.

She's been gone eight months today.

While the constant crying and ever-present hurt over her loss have lessened, they rear their ugly heads for days at a time when something like this comes up. Sis and I have been in tears for the past week, and somehow the hurt seems fresh all over again.

We finally finished going through everything in the house and had the sale of the remaining belongings in June. Shortly after that we put the house up for sale and it sold within a week. Those weeks were among the hardest I've ever had to go through in my life.

We did it just as she wanted us to. A good part went to charity. The grandchildren got their share of the inheritance as well. We were fair with each other. There was no fighting - no disharmony in the whole process. The one thing she asked is that we not fight when the time came, and we did her proud.

I hope she knows, somehow.

The new owners won't close on the house until September 1st, so Sis and I continue to meet over there weekly for coffee. We still have a very few things to take home and do before we hand it over forever and it becomes "home" to someone else. We want to get some starts from the plants there, dig up a few bulbs, harvest the tomatoes from the one plant that came up on its own in the garden. We've both decided we will probably never drive past the house again after it's sold. It's too painful to think of someone else living there.

There are two pieces of German chocolate cake in the freezer at the house. Mom made them over a year ago, long before the stroke, and tucked them away to enjoy at a later date. It's the same German chocolate cake she made for me every year for my birthday.

Tonight Sis and I will sit down together at the house and have a bite of that cake to remember Mom on her birthday.

I think she'd like it that way.

A Final Note

2008-12-08T13:30:00.002-06:00

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

2008-11-29T19:29:00.004-06:00

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

2008-11-29T10:19:00.003-06:00

In Loving Memory

Norma Jean Smith Humbard

July 29, 1933 - November 29, 2008

The Mom Watch

2008-11-28T22:29:00.002-06:00

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

2008-11-28T10:28:00.004-06:00

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

2008-11-27T18:30:00.003-06:00

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

2008-11-26T19:32:00.004-06:00

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

2008-11-25T13:18:00.003-06:00

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

2008-11-24T22:23:00.002-06:00

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

2008-11-23T23:18:00.003-06:00

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

2008-11-22T19:13:00.002-06:00

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

2008-11-20T18:59:00.003-06:00

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

2008-11-19T23:23:00.003-06:00

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

2008-11-18T20:01:00.003-06:00

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

2008-11-17T20:11:00.003-06:00

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

2008-11-16T20:59:00.004-06:00

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

2008-11-15T23:28:00.003-06:00

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

2008-11-14T19:05:00.003-06:00

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

2008-11-13T20:56:00.003-06:00

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

2008-11-12T22:02:00.002-06:00

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

2008-11-11T22:52:00.003-06:00

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

2008-11-11T13:12:00.003-06:00

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

2008-11-10T19:02:00.003-06:00

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

2008-11-09T22:03:00.004-06:00

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

2008-11-08T20:50:00.002-06:00

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

2008-11-08T07:49:00.002-06:00

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

2008-11-06T09:18:00.002-06:00

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

2008-11-05T22:06:00.002-06:00

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

2008-11-05T12:42:00.002-06:00

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

2008-11-04T09:23:00.002-06:00

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

2008-11-03T10:57:00.002-06:00

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

2008-11-01T23:02:00.003-05:00

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

2008-10-31T23:03:00.004-05:00

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

2008-10-31T11:49:00.001-05:00

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

2008-10-30T09:50:00.003-05:00

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

2008-10-29T09:00:00.004-05:00

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?

2008-10-28T21:24:00.002-05:00

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???

2008-10-28T10:26:00.002-05:00

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

2008-10-27T09:51:00.004-05:00

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

2008-10-25T21:27:00.002-05:00

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

2008-10-24T10:25:00.003-05:00

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

2008-10-23T12:18:00.004-05:00

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

2008-10-22T12:11:00.003-05:00

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

2008-10-20T14:16:00.003-05:00

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

2008-10-19T23:51:00.003-05:00

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.

2008-10-18T11:49:00.005-05:00

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

2008-10-17T10:25:00.002-05:00

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

2008-10-13T09:41:00.003-05:00

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

2008-10-11T23:25:00.002-05:00

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...

2008-10-10T10:09:00.003-05:00

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

2008-10-08T11:42:00.003-05:00

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

2008-10-07T19:50:00.002-05:00

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

2008-10-04T22:48:00.004-05:00

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

2008-10-03T21:11:00.002-05:00

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

2008-10-02T22:03:00.002-05:00

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

2008-10-01T21:30:00.003-05:00

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

2008-09-30T20:36:00.002-05:00

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

2008-09-29T10:19:00.004-05:00

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

2008-09-24T22:17:00.002-05:00

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

2008-09-22T22:24:00.003-05:00

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

2008-09-21T19:21:00.003-05:00

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

2008-09-20T11:04:00.003-05:00

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

2008-09-19T22:34:00.007-05:00

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

2008-09-18T21:54:00.002-05:00

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

2008-09-16T22:11:00.004-05:00

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

2008-09-16T12:22:00.002-05:00

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

2008-09-15T12:39:00.002-05:00

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

2008-09-14T21:11:00.002-05:00

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

2008-09-14T10:27:00.002-05:00

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

2008-09-13T22:00:00.002-05:00

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

2008-09-12T19:41:00.002-05:00

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

2008-09-11T20:01:00.003-05:00

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

2008-09-10T22:17:00.003-05:00

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

2008-09-09T22:18:00.002-05:00

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

2008-09-09T09:31:00.002-05:00

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

2008-09-08T10:44:00.002-05:00

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

2008-09-07T20:18:00.002-05:00

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

2008-09-06T22:28:00.002-05:00

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

2008-09-06T13:04:00.002-05:00

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

2008-09-04T21:49:00.002-05:00

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

2008-09-01T21:38:00.003-05:00

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

2008-08-31T21:08:00.003-05:00

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

2008-08-30T00:02:00.000-05:00

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

2008-08-29T23:34:00.003-05:00

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

2008-08-28T22:58:00.003-05:00

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

2008-08-28T09:41:00.002-05:00

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

2008-08-27T20:49:00.002-05:00

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!

2008-08-26T21:46:00.002-05:00

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

2008-08-25T22:48:00.003-05:00

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

2008-08-23T22:17:00.002-05:00

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?

2008-08-22T21:26:00.003-05:00

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

2008-08-21T20:45:00.002-05:00

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?

2008-08-20T20:01:00.002-05:00

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

2008-08-19T18:02:00.002-05:00

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

2008-08-18T11:22:00.003-05:00

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

2008-08-17T20:51:00.003-05:00

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...

2008-08-17T19:22:00.004-05:00

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

2008-08-16T23:41:00.003-05:00

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.