My Journal
March 1995

Enya


Thursday, March 2, 1995

I'm so scared, I'm literally shaking now. It seems I have only a few days to recover from one bad time, and then we have another.

Saturday turned out alright after all. Sometime between 3:00 and 4:00 a.m., my mother decided to go back to bed, so I got about three hours of sleep, and I everything was fine on my day off. Well, everything except that at the Alzheimer's support group meeting everyone was telling me that I have to have help, that I couldn't go on without sleep, that I had to get my sister to spend the night sometimes so I could sleep, or that we had to hire someone else. Neither of those are the solutions. My sister had over a year and a half of sleepless nights already before I came home, and she has a job and a family. Not having to hire someone is why I came home, and because my mother was always complaining about those who were hired to take care of her, and because only one of them was ever able to handle taking care of her for more than a few weeks or months.

Anyway, after a good morning when she complimented my breakfast, after a nap, my mother awoke all upset, scared, and confused. When I tried to calm her, she told me that I wasn't supposed to be here, that she didn't want me touching anything in the kitchen, or putting any clothes in the dryer, or putting my mail in the mail box. She was so afraid I would disturb "the other girl's things". Trying to talk to her about it, trying to reassure her that everything was alright, only made her more agitated. All I could do was leave her alone for a while.


Friday, March 4, 1995

It's 2:30 am. My mother just got up to sit in her chair, probably for the rest of the night, since wanting to ever since 9:00 p.m. Since then I've kept her in bed by telling her it was either before or just after midnight. Even at her 9:00 try, though, she was angry, and as she got back into bed she said that she was going to talk to someone about getting rid of me. Her words were mumbled and garbled, but I think I heard her say she was going to talk to her mother.


Monday, March 6, 1995

Sometimes I think I'm doing better with my mother, when I look back over the first six months of my journal. We had some terrible times in the first few months. In some ways, things are much easier now compared to then. She does eat most of the time, she's not as incontinent now as she was then, and when she gets up at night, she doesn't usually wander all through the house looking for "the baby", or "U.S." (my father), or "home". She does get up more in the middle of the night now (the frequency is increasing every month), but when she does, she usually just goes to sit in her chair. She gets confused, more often I think, upon getting up whether in the mornings or at night, and even throughout the day. It's mostly just verbal now, not physical. She hasn't raised her hand to hit me in a long time. But there is a lot of anger in her words. This morning she told me that she thinks I'm so awful and that I had "run off all the other girls that were here."

She had been talking about "the chickens" this morning when she got up, and when I told her everything was alright, she didn't have to worry about any chickens, she said "I don't know what to do, and you don't either!" I tried to help her get her robe on, but she wouldn't let me, and when I put her wrap over her legs after she sat in her chair, she told me, very angrily, "Leave me alone!" After I got breakfast ready and came for her, she mumbled something about needing to take something "to the train." I told her everything was ok and she had probably just had a dream. Again, I made the mistake of saying something like that, an this was when she told me how awful I was.

It's a dark cloudy day, and that doesn't help. Three more days of rain are forecast before we're to have a day that is only partly cloudy. Spring is arriving outside, though. I hope, if we can ever get outside again, the flowers I'm planting will cheer my mother.


Wednesday, March 8, 1995

What is is about my being here that makes my mother get up in the middle of the night and sit up all night the way she does? She didn't do it this way when my sister stayed with her at night. Is this another stage of the disease, or is this happening because I'm allowing it, or am I doing something that is causing it to happen?

My mother stayed in bed only three hours tonight, and telling her we needed to stay there longer so we'd both feel better the next day did no good. She informed me that she was leaving here as soon as her Mama came to get her because she didn't like this place.

We had a strange night last night, too. My mother was incontinent for the first time in several months. It was really my fault--I didn't wake up soon enough, and she was sitting on the side of her bed when it happened. Again, later in the night she got up and I didn't hear her. She was all the way in the other side of the house, sitting in her chair in the dark, and I don't know how long she had been there. This doesn't happen often--usually I'm awake as soon as I hear her move, but sometimes when I'm really tired it happens, and I feel so bad when it does, because who knows what could happen to her wandering around alone in the house.


Thursday, March 9, 1995

We got lucky last night, and my mother stayed up only an hour longer and then we went back to bed. She did get up again an hour later to go to the bathroom in the other side of the house, and she said she was looking for someone, so I was afraid we would be staying up again, but we didn't.

This morning my mother got up at 5:00 a.m, didn't want her robe on or a wrap over her legs, didn't want me to fix her any breakfast, and she said her parents were coming to get her for a day in town. By the time I got breakfast about ready, she wanted to go back to bed. She ate just a little cream of wheat first and then went back to bed and slept about thirty to forty-five minutes. When she got up again, she allowed me to help her get dressed, but she was behaving strangely. After a nap in her chair, she seemed to be in pain, so I gave her something for her headache. Then she grabbed her chest and throat, so I thought it was indigestion and gave her something for that. A little later she started shaking as if she might be having a seizure, and she didn't seem to be able to talk. I called the Home Health nurse. A few minutes later, my mother got up and started walking around and seemed ok except for still acting kind of strange, so I called to Home Health to tell them I thought she was ok, but the nurse was already on the way.

By the time the nurse arrived, the shaking had started again, though not as much as earlier, and that plus a slightly elevated blood pressure made her insist that we shouldn't take any chances, so we called 911, got my sister off work, and had the ambulance take my mother to the emergency room.

We were there several hours with a heart monitor hooked up, chest x-rays taken, blood tests, and everything came out fine--nothing at all wrong, according to the tests. The doctor gave us a prescription for something for gastritis. And I've probably caused the gastritis by giving my mother foods high in protein because the previous blood tests had showed her protein being low. Nomatter how hard I try to do the right things, sometimes it seems like I just can't do anything right in taking care of my mother.


Tuesday, March 14, 1995

We've been doing so well lately--almost a full week now of sleeping all night, and even till past daylight. I was hoping maybe this meant the getting up all during the night was over. But we're had another one last night. At 11:30 p.m. my mother said "I just couldn't stay there any longer". Before that every time I'd got up with her for a bathroom visit she had been so sweet and told me "You don't have to get up with me. Just stay in bed."

We had a such a nice afternoon yesterday. She wanted to sit outside and watch me work in the flowers. I got the bench for the garden ready for her over the weekend, with some help from my brother-in-law, and she loves it. We sat out there for a while, and she watched me plant flowers around the tree by the bench. It was a wonderful afternoon.

I had hoped things were really getting better--that maybe the Zantac the doctor prescribed, the Mylanta he said to give her, and a change in her diet would help the stomach problems so well that she would begin sleeping all night. But it's not just a stomach problem that's making her confused, though that may worsen it--my mother has Alzheimer's, and that's not going to get any better.

At supper my mother got that worried look on her face and started asking strange questions: "I didn't marry him?" and then "Who did I marry?" She was so relieved and happy for a while to learn who she had married, that she had not married the other one who she almost married, the one who drank a lot.

The other day she got so worried in the afternoon and when I noticed and asked why, I found it was because my brother was here, getting his tractor that was stored in an old chicken house. My mother heard the noise and asked what was happening. When I told her, she said he was going to get in trouble, that he was stealing, taking what belonged to "that man". I tried to explain to her that it was William's own tractor and that he was just storing it in the old chicken house, but I don't think I eased her worry any. Only forgetting what she was worrying about would do that.

I think she is hallucinating more. She sees people in the tv set even when it's not turned on (a reflection of herself, perhaps), she sees birds at the feeders when they aren't there, sometimes she even sees the bird feeders as people. Tree stumps in the pasture cows or pigs, tall grass or short trees at a distance become people. Inside, a pillow or a shadow can become a person. The arm of her chair, her leg wrap, or the covers on her bed can bcome a baby. Anyone who comes in can become either a dear old school friend or a hated enemy.

There are times, too, when she seems to have lost her ability to talk at all--when she just grunts and seems to be trying to talk but can't. It scares me every time, because I think it may be a larger stroke or a permanent loss of function. It happened last Thursday before we took her to the emergency room. And it happened again today for a little while.


Thursday March 16, 1995

It's 1:00 a.m., and we've been up for a few minutes now. My mother has been wanting to get up since midnight, but I told her I needed to warm up this side of the house, that I was afraid the change in temperature would make her sick and this time I think she understood because she went back to bed for a while.

Yesterday was a strange day--hallucinations most of the day. In the afternoon I was out of the house for a few minutes, and I heard a noise. I rushed back in and saw she had turned over her water glass, spilling the water, and was about to pour some milk in my Coke glass. She said she was "getting milk for that kid that came crying" to her. I got another glass and poured a little milk, because I knew that telling her there was no kid there would not go over well. She took the glass of milk and went looking all over the house for "the kid", and not finding one, she put the glass of milk in the refrigerator.

It was much the same earlier yesterday and all afternoon--she saw people everywhere, said she didn't like this house, that she wanted to find her a house by herself, that she needed a real farm, said she was going to go with the next man who came along, marry him, to get away from here. If it weren't all so sad and so hard to deal with at the moment, there's so much humor in things she says at times--if I could just feel relaxed, maybe I could enjoy the humor.

I finally retreated to the kitchen, telling her I was going to finish cooking dinner. By the time dinner was over, she was ok, for a little while.

We're still up at 4:30 a.m.--soon will time to fix breakfast. My mother seemed to have indigestion around 3:00, and I gave her some Mylanta. I'm glad we've found out that and the Zantac seems to work--at least, I hope it's working.


Saturday, March 18, 1995

We've been up since 2:00 a.m. with my mother insisting that breakfast had to be fixed for "them" right away. This time I couldn't get her to go back to bed until I could turn on the heaters and warm the house up (If only I can, sometimes I can suceed in tricking her--If I can just get her to go back to bed, she will fall asleep and forget whatever it was she thought she was getting up to do.)

I didn't start breakfast then because my contact lenses were out and in cleaning solution. I tried to explain that and got her settled in her chair. I nervously tried to get my contacts in quickly, dropping one and almost losing it on the floor twice. When I got them back in and was ready to fix breakfast as she wanted me to do, my mother was asleep in her chair.

My sister told me that once while my dad was alive, my mother got up and cooked breakfast, had it ready at 3:00 a.m. and tried to get my dad up to eat it at that time. When he asked why she did it, she said "I didn't even look at the clock and just thought it was time to get up." My dad died ten years ago, and this was long before then. My sister and I think our mother had Alzheimer's then, or perhaps to began even further back than that. We can think of things she did-- early symptoms even as far back as twenty years ago.

Last night when she went to bed my mother was saying she thought she was going to die. She said she wasn't hurting anywhere, no indigestion, no headaches, but she just felt like she wasn't going to live much longer. Though she was about to go to sleep when I got her dressed for bed, she lay awake for an hour, whispering prayers apparently.

Then at 9:00 p.m., she started getting up about every half hour to used the bathroom. Each time she was confused about something she had dreamed--thinking it was real: Someone had accused her of something she didn't do, one of her kids had got married and that would be one less to cook for--I can't remember the other things, but she kept saying "they said" and things she had apparently dreamed about. It seemed she didn't hear or understand anything I said to her, and when she climbed back into bed she was saying "But they said..."

How I wish I could turn off her ability to have dreams--I wish there was some drug that would prevent them. She dreams someone is in the bedroom with us, and she believes it so strongly, it's like when she wakes up she still sees them there.

Alzheimer's is a strange and amazing disease. Some people actually thought I would be bored coming back to the country to take care of my mother, with no cable TV and no computer with internet access. I would like to have the computer for finding information and support as a caregiver, but it's definitely not boring around here!


Sunday, March 19, 1995

My mother was up before midnight again last night. I tried to encourage her to stay in bed a little longer, told her we both needed some sleep. She told me she was "getting sick of hearing about sleep" and that she "didn't know how anyone could sleep when one of the kids is out there..." The rest of it was mumbled and I couldn't understand what she was saying--something from one of her dreams, something she thought was happening to one of her kids, apparently, and no amount of telling her "It was just a dream" would do any good at all.

Sometimes it seems the bad nights come after we have some very good days. Yesterday was so nice, the weather was so warm, we took a couple of long walks, sat on the porch for a while, sat on the bench in the garden for a while. It seems that all of that should make the night better, but it didn't.

We did get some sleep yesterday morning, though. After sitting up from 1:00 a.m. till 4:30 a.m., my mother decided to go back to bed. We slept until 7:30--and that was so wonderful!


Wednesday, March 22, 1995

Monday was the first day of Spring, but my mother didn't want to go outside all day. She slept a lot during the day. Today she was wide awake all morning, walking through the house, and we took several walks outside. She said she felt so good. She ran out of energy in the afternoon and took a short nap, but she didn't sleep as much as some days. We're still getting up at night, whether she is more active in the daytime or not, it doesn't seem to matter. Tonight we are already up at 10:30 p.m.


Friday, March 24, 1995

Last night we were watching an episode of "Little House on the Prarie" on a video, and my mother suddenly got that worried look. I stopped the tape and asked her what was wrong. She said she hadn't done right by "Sue" (My middle name and what she always called me), that she didn't know where "Sue" was, and that she was worried about her. I tried to explain to her that I am Sue, that she hadn't done anything to me and that I wasn't missing, that I'd been right here with her for six months. She wouldn't accept it, didn't understand me, whatever--she just kept repeating what she had said, worrying about "Sue".

This is the hardest thing about Alzheimers--the most maddening thing. Whenever she remembers she has a daughter by my name, she thinks she's somewhere else, and she worries about her-- not understand or not accepting that I've been right here with her all along.


Wednesday, March 29, 1995

We had a pleasant surprise Sunday night. My mother was up at 9:00, and I was sure it would be another all-nighter, but she went back to bed a half hour later.

Another very nice surprise Monday night--she slept all night until 5:30 a.m. That was wonderful!

But this morning we were up at 3:00 a.m. Not only was she up then, but she was tugging at the covers on her bed, pulling them all off onto the floor, before I could get myself awake.

I must be getting Alzheimer's too--already. I fixed breakfast at 3:00 myself! I had set one of the clocks wrong and thought it was 4:00 a.m. I thought we had actually stayed in bed till it was about time to get up (or as late as I could usually expect my mother to sleep).


Thursday, March 30, 1995

We may have just had our biggest catastrophic reaction ever. I had just got back into bed a half hour ago and was sound sleep (it's only 8:30 p.m.). When my mother got up, I tried a little harder than usual to get her to go back to bed since it was so early and we hadn't been there long. She got angry with me and refused her robe when I tried to help her put it on. When I tried a second time (my mistake) she sure woke me up fast--by some hard slaps in the face!

Yes, she can hit. She is strong, and she can hurt! She called me "Hateful thing!" I think it had something to do with the "babies" she was dreaming about or seeing in her hallucination. According to her, I was supposed to be taking care of them, and I wasn't fulfilling my duties. Apparently she woke up, found me sleeping, and was already angry because I wasn't doing my job.

She's already asleep in her chair now, and I'm watching from the next room. I was afraid she would come looking for me after I left her in her chair, but she didn't. When she wakes up, hopefully she will have forgotten. I'm always so afraid she will remember incidents, or remember them incorrectly. The way things get all backwards in her mind sometimes, she may have thought I hit her instead of her hitting me.


Friday, March 31, 1995

Everything turned out fine last night. My mother had forgotten by midnight, and she was as sweet as could be. She got out of her chair, and though I couldn't understand what she was saying, she seemed very pleasant toward me. Somehow while talking we made it back to the bedroom and she went back to bed.

She tried to get up around 3:00 a.m., but I told her as gently as I could "I won't argue with you about it anymore, nomatter what time it is. But I do need to make sure it's warm first so you won't catch cold." So she got back in bed so I could go turn the heaters on, and she slept until 4:30 a.m.

My mother was silent during breakfast, silent while I was helping her change her clothes, and she was soon in silent sleep in her chair where she still is. I sometimes wonder if she can remember anything at all about the night before. I doubt she can remember much, because she can't remember from one minute till the next. If she can remember anything, it's probably bits and pieces and perhaps a feeling that something happened, that something's not quite right. But then again, perhaps that's the way someone with Alzheimer's feels all the time.


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


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