My Journal
May 1995

Enya


Monday, May 1, 1995

We were up at 3:30 a.m., but it seems like this isn't happening as often now and not as early in the night as it used to. We are much closer to getting full nights of sleep now. Still, I'm so sleepy when we get up a few hours before daylight. This morning I thought I would try lying on the couch to watch my mother, thinking maybe I could still get another nap or two.

It didn't work out that way. As soon as I fell asleep, she was up wandering through the house, saying everything was wrong and this was not her house. When I showed her the bed she sleeps in and the chair where she sits most of the time, she said "We have to get them out of here and back in my house."

We went through two hours of that, with her walking through the house and saying everything was wrong. Finally she settled in her chair, and I fixed breakfast. She came to the table but was still complaining about things being wrong and something needing to be done about it. She hardly touched her breakfast and refused her medicine.

I called my sister, got her out of bed and probably made her late for work, but she talked my mother through eating a little more of her breakfast and taking her medicine. She became more cooperative but still not happy. After breakfast I helped her with going to the bathroom and changing her clothes, and she settled down in her chair for a nap. She woke up fine, just as peaceful as could be.


Thursday, May 4, 1995

My mother refused to eat and take her medicine again this morning. She also refused to let me help her change her clothes. I didn't call my sister this time, thinking maybe my mother would get over it in a few hours.

I was right. When she woke up she was cooperative. But it seemed a little more life was gone from her. Most every time she has a catastrophic reaction, it seems like she's gone a little further after it, into a more advanced stage of Alzheimer's.

She has slept most of the day. It is a cloudy day, and that may be why. At lunch she had trouble eating. It was as if she couldn't remember how to use her spoon and tried to pick everything up with her fingers. I took her lunch to her on a tray because we were having a thunderstorm and I thought she might be afraid to eat in the kitchen. She has been very confused and what she has said hasn't made any sense all day. Once when I helped her with going to the bathroom she kept saying she didn't have any money and that she couldn't give me any. I kept trying to tell her I didn't want any of her money, that I didn't need anything. I think she's having auditory hallucinations, not understanding what I say and hearing something different from what I say.


Friday, May 5, 1995

We're up now at just after midnight. My mother got up at 10:00 p.m., but somehow I got her to go back to bed. I had to help her get back in bed, though. It was as if she had forgotten how.

Somehow lately she seems to have forgotten how to do a lot of little things. She can't remember how to use a spoon, or take out her dentures, and she walks in tiny steps, grasping my hand as if she's afraid she will fall. I can't understand much she says. She's seems to have forgotten how to use the bathroom, and she's afraid to sit on the commode or her bedside potty.

Yesterday afternoon she was shaking and said she was cold, but it wasn't cold in the house. I wrapped her up anyway. She was asleep when my sister came for a visit. We talked outside for a while. When we came back in, my mother was shaking again. My sister thought she might need food because she hadn't eaten much that day. So my sister helped her eat, feeding her with a spoon since she couldn't seem to manage it. Then my mother threw up. She must have a virus.

It's 7:45 a.m. now. I got my mother back to bed this morning at 4:30, and she stayed there until 6:00 a.m. She got up confused and talking about something that needed to be done, but I couldn't figure out what. She said she couldn't move and that she was waiting for "that woman" to help. Finally I got her to let me help her to her chair.

I tried to feed her breakfast, but she spit out her toast and ate only about three teaspoons of cream of wheat. She wouldn't drink the Sprite my sister brought for her yesterday, thinking it might settle her stomach. She let me help her to the bathroom, and then when we got back, she took a few small sips of orange juice. She said something like "That woman said for me not to take it, and I'm not going to take it." I haven't tried to get her to take any medicine this morning, and I was only trying to get her to eat something, but she won't.

Just now at 8:15 a.m., I got her to take a few more sips of orange juice. She seemed better and was even able to hold her glass with a little help, but she still wouldn't drink much. I had better call Home Health and warn them, because I don't think they will be able to get her to take a bath today.

It's 10:50 a.m. The Home Health nurse said she was coming. Before I talked to Home Health, my mother had said she needed to go to the bathroom but she said she couldn't get up. So I had told Home Health that she seemed to have lost the ability to walk. I got out the bedside potty and helped my mother onto it, but she didn't use it. Later, before the nurse got here, we even made a trip to the bathroom. My mother walked all the way there with help, and she used the bathroom for the first time today. After that, I also got her to drink a glass of juice, just before the nurse arrived.

The nurse checked her over, and she was fine as always, except for a slight temperature, and of course, gas in her stomach. The nurse said she probably had a virus. Just as she was leaving, the Home Health aide came to give my mother a bath. By that time she seemed to be feeling much better and the bath went fine.

After her bath, I got my mother to drink half a can of Ensure. I will try some Cream of Chicken soup at lunch, and if that doesn't work, I'll give her more Ensure, and maybe some ice cream, too.

Now it's 1:00 p.m. The chicken soup didn't work. My mother ate about four bites and said she'd had enough. I got her to drink most of the remaining Ensure. But when I tried to get her to take a pill she spit it out. Now she's sleeping again and mumbling in her restless sleep.

When the nurse was here today she seemed more worried about me than about my mother, and she asked me if I had accepted the fact that my mother will never be well again and that she will only get worse. Of course I've accepted that she won't be well again, but the part I don't want to accept is that she will get worse. I need just a little more time with her. I'm not ready to let her go yet.


Saturday, May 6, 1995

We are up now at a little after midnight again, but my mother is very calm, and she's already had a full night's sleep. She went to bed really early--at 6:00 p.m., so really she and I both have had enough sleep.

She seems back to normal now and over being so sick. Yesterday when my sister arrived at 3:30, we peeped in where my mother had been sitting sleeping, and she was getting out of her chair all by herself. She was smiling and more herself again--even headed toward the front porch and sat out there in the swing for over an hour talking to my sister. Then for supper she ate a whole bowl of chicken soup, with a spoon all by herself, having no trouble at all. When I gave her the daily coated aspirin she's required to take, she did have difficulty swallowing that.

It seemed trying to swallow the pill got her a little upset. The Shirley Temple movie couldn't capture her attention, and she seemed to be either in pain or just very tired, so I gave her a Thoridazine and got her ready for bed.

If my mother had permanently lost her mobility as I was afraid she had yesterday, I told my sister I would have said yes, that it was time for her to go to the nursing home. She is heavy, and I can't lift her, and surely couldn't at times when she might have struggled and fought me. But she's ok again now, and I will continue to take care of her, a few months more, a year, for however long I can manage.

It's 8:00 a.m. now. At about 3:30 a.m. my mother got up from her chair so confused and talking about a dead man. I didn't think she could see me where I had laid down on the couch in the next room, but I wonder if she did and if that's what caused the confusion this time. After talking for a while, she went to sleep again until 4:30. I saw her moving and went to ask if she needed something. She mumbled something which I thought sounded like "Let's go back to bed", so I took her to the bedroom, but once we were there, I discovered that wasn't what she meant. She went back to her chair and sat down, and I told her that when daylight came maybe the confusion would be gone and I would fix breakfast and everything would be fine then. She said "Fix breakfast." I asked "now?", and she said "yes", so I did, though she fell asleep again while I was fixing it.

When she woke up she seemed fine. She ate half her breakfast and took a pill (Sinemet for her Parkinson's symptoms). After breakfast, I got her dress and she sat down in her chair. I asked her if everything was ok, because she looked a little worried about something. She said it would be when she got in the car. During the night she had said something about going "to the house" and I had told her I would take her wherever she wanted to go when daylight came. This time she obviously remembered that, and she wanted me to carry out the promise I made in the night. So from 7:00 to 7:30 this morning, I took her on a ride through town and back on the interstate. When we got back, I told her she was home, and she seemed satisfied.


Sunday, May 7, 1995

Here we are again, right on schedule, up just after midnight. This isn't the beginning for tonight, either. My mother sat on the side of her bed for two hours. She didn't want to go back to bed or to go to her chair--just sat there on her bed. The first hour it was without a robe, and I kept trying to get her to let me put it on her so she wouldn't get sick. Finally she reached for it and let me help her put it on.

She was talking about her daughter that had "got herself pregnant" (no such daughter has ever existed). Then my mother talked about "the man" she was married to, the "other U.S.", she called him, not the one who had died. She said he had gone to get some papers and she was waiting up till he got back.

I can't sit up awake this time. I know I will risk her being more confused if I fall asleep on the couch, but I just can't stay awake any longer, and I'm going to have to lie down on the couch.


Monday, May 8, 1995

My mother had a good day yesterday at my sister's while I was here cleaning house, gardening, and going grocery shopping--doing things that often upset my mother if I do them while she's here. She doesn't like for me to clean house while she's here, and it sometimes seems to upset her when I go shopping. It seems sometimes she thinks I'm running up bills for her. She's better at my sister's when I'm not there, too. When I am there, often she keeps asking about going home, even when we've just got there.

Yesterday morning my mother had let me help her get back into bed at 3:30 am. Then she was up at 5:00 a.m., on the other side of my bed, shaking me to wake me up. I was so exausted that this was one of the rare times when I didn't hear her get up.

She was so confused all morning, and she kept asking me so many questions that I could hardly get beakfast ready. She asked each of them all again as soon as I had answer them. It seemed that she'd forgotten or just got more mixed up every time I gave her an answer.

I called my sister at 8:00 a.m. and asked if I could bring my mother up early for Sunday dinner because she wanted to talk to her and see if she could answer her questions about the family, the past, and this house, for as my sister told me later, she though I was "the new girl who hadn't been her long and didn't know much."

The day went well until late in the afternoon when my sister said she started getting strange and had "that look on her face." Tonight after we came home, my mother thought she was going to die--indigestion again? The Zantac and Mylanta have helped for a while, but lately they don't seem to be doing so well--or perhaps it was leaving them off for a little while when she was so sick. I gave her Mylanta tonight. She's terribly swelled. As soon as we got here, she wanted everything off, even her socks, and I put a cool, loose gown on her. She even wanted the door open to let in some cool air. I was afraid she would want to sit up all night waiting to die. At 7:30 p.m. I asked her if she wanted to go to bed. She said no, that it was too early and that she never went to bed this early. The opposite is true--usually I have a hard time keeping her up until 7:00 p.m. I gave her a Thoridazine and got her dentures out and sat up with her.

We finally got to bed at 11:00 p.m. She was sweet and very cooperative, wanting to do just what I said she needed to do after going to the bathroom. Then at 2:00 a.m, she said that she could sleep so much better in her chair. I guess I can understand considering how badly she is swelled right now.

She slept soundly in her chair the rest of the night. She was in a good mood this morning at breakfast. I was even rested after sleeping on the couch the rest of the night. I'm coming to accept this is just the way it has to be. I can rest on the couch if she isn't wandering and agitated, and I think maybe that seems to be getting a little better. So all is well, after all.


Tuesday, May 9, 1995

I can't believe we're up so early--11:00 p.m. I did sort of expect something though, because at bedtime my mother said she had a headache. I think mainly she was confused over the TV show we watched. She seemed to be enjoying The Waltons so much, and then a father and son were fighting, with lots of loud voices, and that look came on her face.

She didn't seem to be too confused when she got up just now. It might have been the dream, or maybe she even remembered something from the show. When I told her it was too early to get up, she said she had been "hearing them talking in there".

Over-stimulation from today might be somewhat to blame. My mother was hyper all day. She walked outside three times (starting at 8:00 a.m.) and went to sit on the porch swing four times.

Her swelling seems to have gone down some. She seemed to feel well and pretty cheerful all day, and she was even hungry at supper and ate almost everything on her plate. I'm thankful for days like this, even if we do have some getting up to do at night.


Wednesday, May 10, 1995

It turned out not to be an up-all-nighter after all. Where I sit on the staircase much of the time, I can see my mother's feet and tell if she is getting up. Sometimes, though, she moves them closer to her chair, and I can't see them. I thought that was what had happened last night. But when I went to look, she wasn't there. I hadn't heard her get up at all, though I was sitting only about six feet away. I searched through the house for her and found her back in bed, less than fifteen minutes after she had gotten up.

She was up again around 1:00 a.m., looking for "U.S."--her husband, my father. I hate it when she wakes up looking for him. I don't want to tell her he's dead, but I don't want her to go on looking and worrying. This time she forgot quickly, it seemed, and she got back in bed and went to sleep.


Friday, May 12, 1995

Every time I think we're doing so much better and my mother is so good that I think I could keep on taking care of her for years and years--then we are up again at night. It's only 11:00 p.m. now, and we're up. My mother tried getting up a couple of hours ago. Then I guess I was successful in convincing her that this was her house, that was her bed, and she was where she was supposed to be. This time she didn't ask, and she didn't say a word--just got up and headed for her chair.

This afternoon she sent me to torn for a pair of walking/work shoes since my old ones were so torn up and dirty from working in the garden. She gave me $15 to buy them. At bedtime she said she liked it better when it was just me and her and none of "the other girls" were here. I guess she thinks we switch and a different "girl" comes after bedtime.


Thursday, May 18, 1995

I haven't written here in almost a week because everything has been going along fine--actually wonderfully, considering how bad it can get at times. There has been an occasional time at night when my mother has asked her usual "What are we doing here?" and pleaded "I want to go home," but it hasn't kept her up any this week.

She has seemed ok physically except for having some diarrhea, which does upset her, making her think she's been given something that caused it. This afternoon she's been upset with me because after she came to tell me how hot she was, I opened the door and turned on the fan (there is no air conditioning in the house, except one small and very old window-unit in the kitchen). It's getting to the point that she doesn't know how to ask for what she wants (how do I know for sure if she is hot or cold?), and it sometimes seems that no matter what I do, I don't please her.

She hasn't walked outside in two days--says she just doesn't think she could make it. I wish she would try. She seems more like her old self, so much happier and more content, when she's walking outside.


Friday, May 19, 1995

We are up now at a little after 9:00 p.m., just a couple of hours after going to bed. My mother seems to be hallucinating. She said she got up "to see him" and she pointed across the room, at the TV set, I think. She got really irritated with me when I went with her to the bathroom, too.

I'm so sleepy, and I can't sit up. I'm going to see if I can get a little more rest on the couch.


Saturday, May 20, 1995

Last night went much better than I expected. We were back in bed by 11:00 p.m. When my mother woke up from sleeping in her chair, she looked like she could barely move because of the way she had been sitting--with her head bent over, almost touching her lap. I had thought I should get her to lean back in her chair, but the way she had been hallucinating and agitated, I was afraid to try. When she woke up, she thought the wrap over her legs was a baby, and she wanted to take it back to bed with her. I let her take it to bed with her--no sense in trying to tell her it's a blanket when she sees it as a baby. She slept peacefully the rest of the night with the wrap beside her.

This morning I think she has a touch of diarrhea, and she still acting a bit strange. She's seeing other people here. She didn't want to eat breakfast, but I persuaded her to eat a little. I'm out of here in two hours--for my Alzheimer's support group meeting and a day of shopping!


Sunday, May 21, 1995

It's happening in the daytime this time. We didn't go to my sister's today. This afternoon she woke up from napping in her chair and was upset because she thought she saw someone outside cutting something--"that boy" she said, was doing something he wasn't supposed to do, something "that man" wouldn't like. When I told her there wasn't anyone out there, she really got angry and told me I was always saying that. When I said, "Then show him to me," she just started wandering though the house and getting more and more angry. I tried to calm her, to tell her everything was ok and that I was taking care of everything. She blew up again and said that I was trying to take over everything, to take everything from her. I just walked away from her for a while, fare enough away that she couldn't see me but still close enough hat I could watch her. When she sat down, I sat down in the next room.

She got up a few minutes later to go to the bathroom. I followed to help her, and she started asking me about what was going on. It seemed she thought I was a different person, not the one she had just been talking to. After the bathroom visit, I talked to her about trusting and not worrying for at least half an hour, and I finally got her calmed down. When I asked, she didn't know what started it all or what it was about. She had forgotten, and I told her that what her disease does to her and why she needs to just trust people and not worry about things.

We walked outside, had a snack, and now she's resting in her chair again. I'm tired but relieved.


Monday, May 22, 1995

My mother is sleeping so much better at night, but she has been more confused in the daytime lately. She doesn't understand anything I say sometimes. She got really angry today when I asked if she needed to go to the bathroom. Then she took a nap and a few minutes later when she woke up, she was so sweet. She understood this time, and I took her to the bathroom. It was like I was a brand new person to her, yet someone she knew and loved. She said she wished I lived with her. I told her that I do, and it made her so happy that she cried. Then I asked who she thought I was, and she said "my sister".


Wednesday, May 24, 1995

I think the herbs are helping us both rest at night, and maybe even be a little calmer in the daytime, too. Yesterday I told my mother I was going to fix myself a nice relaxing cup of chamomile tea, and she said "Make me one, too". Afterwards she was so relaxed and rested well in her chair.

There are still bad times, though. This morning she woke up from a dream really agitated, and she asked me why those kids were in here. I calmly told her there were no kids here as I helped her to the bathroom. When we got back to here chair, I gave her some Mylanta because I could hear gas in her stomach. Then I told her I was going to fix her a cup of chamomile tea like yesterday. She made no reply this time.


Thursday, May 25, 1995

It's really getting hot here, really too hot to drink hot tea. That makes bedtime hard. My mother doesn't like me to use the fan, but we have to, with no air conditioning. It's hard for anyone to be comfortable when it's like this, so I can understand us being up tonight since 9:00 p.m.


Saturday, May 27, 1995

We didn't have a good beginnning to our night last night. My mother was silent at supper and didn't seem to enjoy watching TV afterwards. It seemed she had indigestion, so I gave her something for that. It was so hot in the house, and I couldn't get it cooled down. My mother kept saying she was hot, and then that she was cold. She said she was hurting all over-- her head, her stomach, her toes. She was very swelled again.

I got her to bed, but we were there for only an hour. We sat up for an hour, had a cup of tea, and then we went back to bed and slept well the rest of the night except for one incident around midnight. When I woke up, I found her moving her bedside potty from in-between our two beds. I asked her what was wrong, and she said "He's there, on that bed" as she pointed to my bed. I told her I had just been there, sleeping on that bed, and that there was no one else here. She then got very angry and called me a liar, even after I turned the light on to show her what I had said was true. It seems she was still hallucinating, still seeing someone there in my bed, and as I went to the bathroom with her (she insisted on going in the other side of the house), she accused me of being with "that old boy", and she kept saying "I'm going to tell." I helped her back in bed and asked if she would like a blanket over her as well as the sheet, since it was cooing down. She grabbed the blanket and angrily shook it at me. Then she turned over and fell sound asleep. She woke up a couple more times during the night, when she used her bedside potty and then obediently got back into bed for more good sound sleep.


Sunday, May 28, 1995

Here we go again--another holiday when all the family is getting together, and the first time since Christmas that my mother's two granddaughters are here at the same time. After looking forward to it all week, this morning she says she's not going to the Memorial Day cookout.

But it's only 7:00 a.m. There's plenty of time. She thinks she's dying today. I've given her Zantac with hrt two bites of breakfast, and just now I gave her Mylanta. We will keep working on it and maybe try again with a little more breakfast or a snack at 9:00. Maybe after that she will be feeling better.

We had another night that wasn't so good, but yet it was better than sitting up all night. She wanted to get up several times between 8:00 p.m. and 10:00 pm, but I encouraged her to stay in bed, thinking we would have a better day today if she did. By 10:00 p.m. she was really mad at me. When she used the bathroom, I handed her tolite paper as usual, but she didn't use it. When I tried to do it for her, she hit me all over and pushed me away from her, telling me I was "a bad old thing", and something about how I had "took over and tore up this house."

Sometime I feel like this is all so beyond my abilities and I wonder why I'm here trying to take care of her. But I know I couldn't live with myself if I didn't give it a try at least.


Monday, May 29, 1995

It is 3:00 a.m. My mother tried to get up an hour ago, but she was good natured and agreeable when I told her it was around midnight, although she did say "You always say that". Really, I thought it was around midnight. I think I had been lying there awake most of the time since around 11:00 p.m. when she had gotten up to use the bathroom.

A few minutes ago she was seeing a man in the bedroom, or rather in the small bathroom that adjoins the bedroom. When I turned the light on in the bathroom to show her there was no one there, she said "You're in danger."

I got up with her and she agreed to having a cup of chamomile tea. She told me to watch myself while fixing it, still feeling that there was someone in the other side of the house.

It's 3:30 now. We've had our cup of tea, and when I took her to the bathroom just now, my mother asked me something about "a killer". I told her she'd just had a bad dream. When she sat back down in her chair, I thought I'd better ask her a little more about it, her dream, her hallucination, whatever it was, and it might help if we talked about it. But she was totally nonresponsive, except she had a strange grin on her face. Now she was scaring me, so I retreated to the next room to wait it out.

As for yesterday--Memorial Day--all went well. She woke up, agreeing to take a bath. She fell back asleep, and I was afraid she would not be so agreeable when she woke again. I was right. She was complaining about having to be with people today, so I reminded her that those people were the ones who loved her most and the ones who she loved. She was fine all day except for getting tired in the afternoon.

It's 8:00 a.m. now. This morning has still been strange, even after daylight. At 4:30 a.m., I got so sleepy and lay down on the couch. By 4:45 my mother had woke up. I went to the bathroom with her and then talked her into going back to bed for an hour. She stayed for almost an hour, and when she got up she seemed fine at first. But then she said she couldn't find hers, that it had her name on it. I asked what she was looking for, and she replied that she didn't know. Then again during breakfast, she wanted to know where was hers, it had her name on it, everybody's had their names on them, I just wasn't doing it right, and why wasn't I feeding the others breakfast.

She kept talking this way, even though she ate most of her breakfast, took her pills, and let me help her get dressed. While I was watching dishes, I noticed she kept starring at me from where she sat in her chair. Once she got up and came to me, asking why didn't Myrtle Lee (my sister) send for her. I assumed that she had forgotten about the cookout we'd had yesterday and thought it was to happen today. But trying to explain does no good on days like today. Over and over she asks why this, why that, this is broke, that is dead, this is all torn up, something's just not right. She looks to me to fix things, to make them right. There's no convincing her that things are already right, that nothing is torn up, that things are as they should be--especially on days when she's not understanding anything I say, or not remembering it as soon as I've said it.


Copyright © 1995-2005 Brenda S. Parris
Background Copyright © 1999 Brenda S. Parris


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