A Final Note

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

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

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

Until we meet again,

Chris

And Now, Peace

Final arrangements have been made for Mom.

They are as follows:

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

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

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

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

Blessings to you all, and finally, peace.

Safe In His Arms

In Loving Memory

of

Norma Jean Smith Humbard

July 29, 1933 - November 29, 2008

The Mom Watch

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

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

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

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

One Date Down, Two To Go

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

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

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

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

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

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

My prayer is that God takes her soon.

Another Day To Be Thankful

Mom survived today - so far.

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

We were, truly, thankful.

And so the waiting continues.

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

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

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

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

A Day Of OK

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

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

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

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

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

And she heard us.

So we'll see what tomorrow brings.

When Tears Fall Down

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

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

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

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

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

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

Stroke Two

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

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

The nurse has given her only a few days.

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

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

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

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

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

It's time.

Life As We Know It

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

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

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

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

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

What kind of life will there be after Mom?

He's Watching Over Her

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

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

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

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

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

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

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

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

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

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

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

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

Grace For The Journey

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

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

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

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

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

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

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

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

And she's so very right.

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

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

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

Just so you know.

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

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

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

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

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

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

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

The Other Side Of The Swing

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

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

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

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

Swinging

It was a very good day.

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

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

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

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

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

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

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

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

And we keep on swinging.

Sunday Dinner With Gratitude

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

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

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

But it was strange.

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

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

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

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

And the painted ponies go up and down.

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

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

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

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

Thank you.

Same Day, Different Date

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

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

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

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

Close To My Heart

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

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

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

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

And there's one more thing.

The stand that holds her feeding pump.

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

Yes, things are slowing down.

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

But we're mostly just waiting now.

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

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

But it will never be far from my heart.

What Really Matters

Tonight I am at Mom's while I write.

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

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

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

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

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

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

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

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

What a wonderful legacy to leave.

What a wonderful Mom to have.

A Better Day

Mom was a talking machine today.

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

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

At least for today.

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

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

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

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

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

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

And what better day could there be?

The Pain Of Nurse Ratchet

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

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

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

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

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

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

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

Surreality

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

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

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

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

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

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

Just as if my mom wasn't dying.

Cherish Is The Word

Peace.

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

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

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

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

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

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

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

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

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

Slowing Down

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

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

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

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

A Day Of Few Words

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

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

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

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

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

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

Taking A Break

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

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

And Mom was happy.

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

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

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

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

And so we move forward, day by day.

I'll Be There

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

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

But all was not well.

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

It broke my heart.

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

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

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

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

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

And I will be there.

Closer Still

Today was not a good day for Mom.

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

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

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

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

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

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

Winkin', Blinkin' and Noddin' Off

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

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

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

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

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

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

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

It's a tough thing, this.

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

With A Side Of Gravy, Please

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

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

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

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

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

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

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

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

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

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

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

I promise to make them biscuits and gravy in return.

Nite O' Rest

Mom slept like a rock Saturday night.

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

Sheesh.

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

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

Shame on me.

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

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

I am a sorry lot.

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

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

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

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

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

To Sleep, Perchance To Wake Up

Tonight I am spending the night with Mom.

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

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

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

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

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

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

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

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

The Phantom And The Fashionista

Today was a bit of a challenge.

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

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

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

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

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

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

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

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

"I want to take this robe off."

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

"Yes I do. I have pajamas on."

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

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

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

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

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

"Yes I do!"

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

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

Sheesh.

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

I was about to be sunk.

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

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

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

Have I mentioned lately that caregivers should be paid more?

All That Matters

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

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

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

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

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

As if we could ever forget.

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

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

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

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

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

It was a good day for her.

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

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

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

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

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

We are blessed.

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

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

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

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

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

It All Started With The Chicken

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

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

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

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

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

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

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

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

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

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

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

And we'll carry it with us always.

Could I Have A Rim Shot, Please?

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

Me: No, that's Thursday.

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

Me: Right.

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

ba-da-bum.....

Roberta, Where Are You???

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

Mom promptly named it Roberta.

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

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

Only now Roberta #1 is lost again.

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

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

And...

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

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

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

If there is such a thing.

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

Oh, and has Roberta #1, too.

The Gift

This past weekend was hard.

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

I do now.

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

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

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

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

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

Then we asked her the hard question.

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

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

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

And what a gift it is!

Home Sweet Home

Mom is home.

And those words are bittersweet indeed.

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

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

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

It was a sad realization.

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

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

She fell asleep on the couch, happy.

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

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

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

I'm going to bed.

Gotcha Covered

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

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

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

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

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

Oh yes.

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

I just hope it doesn't rain.

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

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

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

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

Trying To Make Scents Of It All

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

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

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

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

Mom was always famous for her pies.

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

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

I couldn't agree more.

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

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

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

I hope not.

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

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

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

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

Perhaps With Roller Skates

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

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

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

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

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

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

Through tears, "Perhaps with roller skates."

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

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

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

Maybe so, Sis. Maybe so.

One Last Time

Today Mom's hemoglobin came in at 6.0.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And that is somehow comforting for me to hear.

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

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

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

And she wept even more.

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

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

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

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

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

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

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

And then she went back to the crazy.

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

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

And I cried again.

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

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

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

Letting go is hard. It hurts your heart.

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

Losing Ground

Mom is still bleeding.

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

I went to the grocery store.

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

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

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

It's too soon.

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

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

And eventually, we'll let her go.

Enough Is Enough

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

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

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

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

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

But the blood thinners will stop. Permanently.

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

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

Because enough is enough.

A Short-Lived Stay

Mom is back in the hospital again.

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

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

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

For now.

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

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

Meanwhile, Back At The Ranch...

Mom is now back at the rehab center.

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

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

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

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

And we hope the answers come soon.