My Journal
August 1995


Friday, August 4, 1995

For two weeks everything has been almost perfect--except for some daytime confusing and "getting lost" right here at home. My mother has slept well every night. One night she woke only twice for going to the bathroom! But tonight is another story.

She was all worn out and wanted to go to bed at 6:00 p.m. after a day of being rather hyper and not doing much of her daytime napping. She's been trying to get up since 9:00 p.m. Every time it was a different question: "Why are we in a place like this?", "Why are all these people here?", "Why are you here? Who invited you here?, Don't you have some other place to stay?" She was hungry, so I gave her a snack. Now at 11:30 p.m., she's sitting in her chair, wide awake but silent, not appearing to hear or understand anything I say to her. It looks like we will be up all night.

Saturday, August 5, 1995

Thankfully, my mother went back to bed last night at midnight and went to sleep. But it took me a long time to get back to sleep. She was up again at 4:00 a.m., up and down and wandering all over the house, talking about some man wanting her money. At 5:00 a.m. she sat in her chair and I fixed breakfast.

We're up again tonight. It started the same way, with my mother wanting to go to bed as soon as my sister left from her afternoon visit, and before we'd had supper. I rushed supper up and got her there by 6:00 p.m. But she kept getting up from 7:00 p.m. to 8:00 p.m., using the bathroom and talking excitedly about some kind of plans she was making, some kind of work that had to be done that she was letting me do. At 9:30 she got up, saying "he" is here and that the work "must be done now." Now at 9:40, she's fallen asleep in her chair.

Thursday, August 17, 1995

Things have been going pretty well till the last three nights. My mother has been just sitting on the side of the bed, not getting back in in bed or going anywhere else. Last night she sat there, and at midnight she told me to get out of bed and fix her something to eat.

On Tuesday night she kept sitting up, and at 1:00 a.m., I got the big wedge pillow that I bought for her and suggested she prop herself up on it, and maybe she could still go to sleep that way. I lay back down and watched her. I dozed a little as I watched, but I don't think she slept much herself from 1:00 a.m. until 3:00 a.m. Then she lay back down and slept until 7:00 a.m. We really got lucky that time!

But not this time. My mother was up and down from 11:00 p.m. until midnight when she ordered me to get up and fix her something to eat. She said "None of ya'll don't ever fix me anything to eat."

After she ate, she calmed down. She leaned against the big wedge pillow for a couple of hours, but again, I don't think she slept much until she laid back down at 2:00 a.m. But I'm not lucky like yesterday--we're up now at 4:00 a.m.--to stay it seems.

Tuesday, September 5, 1995

Again, I haven't written in here in a while, not because there's been no problems, but perhaps because I was too busy attempting to solve them and just too tired to write anything down. I had also lost my journal. I'm getting really bad about losing things under my piles of mail and books.

Though my mother is sleeping for longer periods of time at night usually, it still seems she is getting up more confused and wanders through the house at all hours of the night. I've found out most often all she really needs to do is to use the bathroom, but getting her there is a major task. Often she is just fine as soon as she's made the bathroom visit, and she just crawls back in bed. But until she does it, she is often hysterical.

At 3:00 a.m. this morning she wandered through the house several times, talking on and on but saying hardly anything I could understand. There was a sense of urgency, and she was upset about something she was looking for or something that had to be done. Finaly I got her to go back to bed at 4:15, only to get right back up again. This time I got her to sit on her potty, though she got very angry at me. But as soon as she had used it she was calm, and she crawled back in bed and slept peacefully until 6:00 a.m.

It's getting to be this way every night lately. Always the same thing--she just needs to use the bathroom but doesn't know it. She doesn't understand what I'm saying when I tell her so. She gets angry, and her anger grows until we finally have a bathroom visit.

During the day, any little noise from the kitchen will make her angry sometimes. If I drop something, I'm really in trouble. Sometimes if I even touch her, just to help her up from her chair to go to the bathroom or to the table at mealtimes, I'm in trouble. Either my hands are too cold or I've hurt a sore place on her arm.

Sometime in the past couple of weeks I passed the one year mark. I have been taking care of my mother for a year now. I don't know how much longer I can go on. And yet, I've invested so much into taking care of my mother, and it is my life now-- I have no other life to go back to. So how can I give up now?

Sunday, September 17, 1995

I'm nearly a month into the second year with my mother, and I'm so afraid this is the end, not the beginning of another year.

My mother's confusion and her hallucinations and delusions are growing worse all the time. Just in the past two weeks, it has seemed that she's had a total break with reality--not just some of the time or much of the time, but all of the time. Not only does she not recognize any of us as her children, but she doesn't think she has ever had children. Nor does she think she's ever been married, and she doesn't even recognize the name when her late husband, my father, is mentioned.

We used to have bad times and good times both, but now it's mostly just bad times. There's no longer a time when things are better. Her bad reactions are no longer caused by something I can figure out, because now they always seem to be reactions to her dreams, hallucinations, and delusions and to the fact that I don't know what to do about them to make things alright for her. Always there's something she thinks has to be done immediatly, but usually she can't communicate well enough to let me know what needs to be done. How can I go along with what she wants or what she thinks when I don't know what it is?

Monday, September 18, 1995

It had seemed we were going to be up the rest of the night last night, but we weren't. My mother was up for only an hour from 11:00 p.m. until midnight. Finally I got her to go to the bathroom, and then she went back to bed and slept until 6:00 this morning, except for getting up three times to use her bedside potty.

This morning I had a hard time getting her to go to the bathroom. I kept asking, and she kept saying she didn't need to. I was worried that she would need to when the plumbers were here, fixing the sink, commode, and bathtub--all of which were leaking, as well as the well pump which hasn't been working since Friday night. I have had to carry water in buckets from a water hose run from my sister's house to the back yard here. We couldn't get anything done about it Saturday because my youngest niece, my sister's daughter, was getting married. All of us, except my mother, had planned to be there. Things always seem to go wrong at the very worst times around here.

Fortunately, my mother doesn't even seem to realize anything is wrong. Things went smoothly while we were at the wedding. The lady who had stayed with her before I came home was with her. I was a bundle of nerves, just thinking about all that could have gone wrong, because my mother, in her confusion, hasn't been very sweet lately. But the lady said she was good and everything went just fine. It was like my mother had an old friend visiting her, and they seemed to have a wonderful day.

My mother slept in her chair most of the morning. I did finally get her to go to the bathroom before the plumbers got here. When they got here I tried to explain to her that a few things were being fixed. That seemed to be fine with her at first, though she did jump with every noise they made, and she told me they were "walking heavy" when they came through the house. I kept her as calm as possible by showing her pictures in magazines, books, and finally some old photo albums. Still she jumped with every noise that came from the bathroom pipes and as the men walked through. I was still a bundle of nerves all day. It wasn't just everything in this old house tearing up and needing repair, but also that my mother might explode at any minute because of strange men coming into the house. When they left, she was exausted and angry with me, and worried about how she would pay the plumbers, which I told her had been taken care of already. But she soon fell asleep and forgot.

When I talked to her once today, my mother had tears in her eyes. She was cuddled under covers in her chair, like a little girl who knows she's been bad and is truly sorry. I felt like going to her and wrapping my arms around her and telling her I'll never leave her. So I did just that, except for the telling her I would never leave her part. We hugged and cried together. She is smiling now. She says I'm going to help her get well.

I want so much to keep on taking care of her. We have had some good times. We've had some terrible times, but some very good times too. But when she's so confused and seeing and hearing things, I just don't know what to do anymore.

My mother is on a nursing home waiting list. I've turned down an opening for her twice since I've been home. I want to turn it down next time, too. But can I keep on going this way?

My sister says she's ready any time I am to put her in the nursing home. My brother-in-law says it would be different if I were helping to make her better, but that I'm not. She's not going to get any better, no matter how hard I try to take good care of her.

But how will she react to a nursing home? And how am I to pick up the pieces and go on with my life knowing I've put her there?

Friday, September 22, 1995

My mother has really been out of it all day. It's our second day in a row of dark cloudy days, and she's been sundowning when awake and sleeping the rest of the time. She's been so confused. I thought it might be indigestion and gave her something for it, but she still wasn't any better. The Home Health aide just gave her a sponge bath instead of trying a shower. She said two others she had seen today were out of control. My mother hasn't been out of control today, not since just before daylight, except for begging "to go home" just before the Home Health aide came, and then telling me that she could see her "daddy in a casket over there." She hardly ate dinner, and for the second or third day in a row, could not seem to remember how to swallow her pills and just held them in her mouth or chewed them up.

The way things have been lately, I'm wondering if its a new stage of the disease and not just the weather. This morning early she just sat on the side of her bed and was angry with me for asking if she needed to use the bathroom or if she was ready to get up--she didn't want to move or go back to bed--just sat there, and well, she did hit me and told me to leave her alone.

I hope there will be a few more brighter days left. Monday I was surprised when I was showing her the old photo albums. It was like just seeing the pictures brought her back for a few minutes. She could identify old friends and family, and even some of her children. There have been other times when I've tried this, and she hasn't been able to identify anyone.

Monday, September 25, 1995

We've been up since midnight. My mother has diarrhea, but she won't let me give her anything for it. She's pretty calm though, and she just wants to sit in her chair.

In about four and a half hours I will be turning 40 years old. I guess it's appropriate we sit up tonight to greet that momentous birthday. (ugh!)

Tuesday, September 26, 1997

We didn't stay up too long yesterday morning--just about an hour, and we slept till around the the time I turned 40--at 5:00 a.m.

We are up now at 3:30 a.m. The weather is getting cooler again, and like before, I try to get my mother to stay in bed until I can warm up this side of the house, but I wasn't successful at that this morning.

Wednesday, September 27, 1995

Last night was much better, except when my mother got up to use the bathroom and seemed to have some diarrhea, she blamed it on her medicine and said she wasn't taking it any more.

It's now 5:30 a.m., but I'm not fixing breakfast just yet. My mother is confused, and it would be better if we can wait till daylight, so hurry sunrise!

Thursday, September 28, 1995

We were up at just past midnight for the rest of the night. My mother said she was just tired of "standing up", her words at the moment for lying down. We went to bed early though. She was so tired at 5 p.m., and after supper, she couldn't seem to enjoy TV at all, so I let her go to bed at 6 p.m., so actually had practically a full night's sleep.

Friday, September 29, 1995

We were up earlier this time, just a half hour or so before midnight. I wonder if it's kind of a habit and that once it starts again, it continues for a while. But it's better to get up than to try to get her to stay in bed, I think--at least we avoid the anger. I'm so tired though. I thought I wasn't going to make it during the afternoon yesterday. For a little while it was like I couldn't stay awake a minute longer.

Saturday, September 30, 1995

My mother did go back to bed Thursday night about an hour later, but she was up really early again. Or was that just this morning? I can't remember anymore. Am I getting Alzheimer's already?

Last night I had my first experience of taking care of my mother while I myself was physically sick (and I still am a bit today.) I started feeling sick this afternoon, with heartburn and nausea. I felt so awful that I couldn't go buy groceries when my sister came to stay with my mother so I could do that. I took several antacids, but they didn't help much. After a while, I told my sister I was better and that she didn't have to stay. I fixed chicken soup for supper for my mother and I--thought maybe I could eat that and she would enjoy it for a change. She did, and I ate most of mine, but I didn't keep it long.

I started feeling better after I threw up, and then I had a cup of tea. Today all I've had was crackers and coke and just a little oatmeal at breakfast. I stil feel weak and still hurt a little--my stomach and head, too.

My mother isn't doing so well either. She's acting very strange. She slept in her chair for several hours after breakfast (which is normal), but when she woke up and I took her a snack, she didn't seem to know what to do with it--just held it in her hand. I tried to explain that it was food and that she needed to eat it, but got no response, so I finally took it away.

Copyright © 1995-2004 Brenda S. Parris
Background copyright © 1999 Brenda S. Parris

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