Tuesday, November 8, 1994

After a bad start yesterday, something special happened in the afternoon. Or at least it seemed that way for a few minutes.

I spent most of the afternoon sitting by my mother as we talked. She was clearer than she'd been in a long time. It started off with her hugging me and crying and saying she had just realized who I am. For much of the afternoon it sounded like she really did.

Then she started asking me about relatives I hardly knew, as if I were part of that family I had not seen in a long time and knew very little about, nieces, nephews, and cousins from my dad's family.

She moved on to talking about my ex-husband, and then about me as if I were not here, and again, I knew she could not accept who I am. She even mentioned our talk of last week when she thought I was the one who took my ex-husband away from me, and she said "When that girl was here, it was all I could do to stand it--listening to her talk." I tried to tell her again that was me and that I was only trying to explain who I was. It was like it just confused her so much that she just quit talking then.

It's so confusing, and scary when she gets so mixed up like that, and when she remembers something like our conversation last week. Again and again I learn, trying to explain something to someone with Alzheimer's does no good; It only makes everything worse by confusing them even more. But at least there are those times when there's a glimpse of the person she used to be, even sometimes, a brief moment when she seems to recognize me.

Sunday, November 13, 1994

We were off to a bad start this morning. My mother said she had an upset stomach, caused by something she ate yesterday. She kept talking about that at breakfast and wouldn't eat much of it, because she said it was the same thing that made her sick yesterday. Telling her it wasn't the same thing, of course, did no good, but rather agitated her.

Surprisingly, the rest of the day went fine, my mother ate well, and it was a good Sunday at my sister's house.

Monday, November 14, 1994

We were up at 2:45 a.m. this morning, for the rest of the night. My mother no longer seems to understand me when I tell her that it is still night, that the house is cold, and that we would be warmer in bed. The house is freezing. I guess I'm going to have to start leaving these gas heaters on all night, because I never know when my mother will get up. I'm glad I got her a good warm robe the other day, and that I was successful in getting it on her last night. Now I just need one myself. I finally got warm and could no longer stay awake--fell asleep on the couch about 4:30 am. Within 10 minutes, my mother was awake.

My mother was asleep again by the time I got breakfast ready. I warmed it up about 45 minutes later when she woke up, but she wouldn't eat it. She took one bite and told me it tasted awful. All I've got down her today was a little Ensure and a banana, and she frowned when she was having those, like I was making her eat and drink something terrible-tasting. She's definitely in her no-appetite stage again.

Wednesday, November 16, 1994

It's so different this month--not at all as predictable as I thought. There have been no major catastrophic reactions and seemingly no attacks of indigestion until today. Lately my mother is becoming more like a baby who can't tell me what is wrong. When I see her looking like she's in terrible pain or distress, I ask, and often she tells me nothing hurts. Then she tells me she's having a hard time getting her breath, and I know it's probably indigestion.

There is no way of predicting anything, because everything seems to happen differently each time. I never know what she will want to eat today, which movie she would like to see--if any--before bedtime, whether she will stay in bed tonight, and when the next catastrophic reaction will be and what will bring it on.

I'm afraid that sometimes I bring them on. I worry about her not eating, and I try to get her to eat more, and she refuses and gets upset. Often it is either that or the medicine, which she hates taking and sometimes has a hard time swallowing.

The book I'm reading now says that unconditional love works with Alzheimer's: "When you can really love your mother exactly as she is, she can reemerge and be who she used to be for a while." (Gray-Davidson, Frena. The Alzheimer's Sourcebook for Caregivers. Los Angeles: Lowell House 1993.) I've seen it happen, sometimes when we watch movies together, sipping hot chocolate or tea, and when we walk around outside, looking at the flowers together. We do have some good times. I just wish they lasted longer before the bad times came again.

Saturday, November 19, 1994

It is 1:00 a.m. We have been up since midnight. Most nights, my mother thinks it's time to get up at least a couple of hours before it really is. Every time she gets up to use the bathroom she asks, "What time is it?" or "Is it time to get up?" or "Is anybody up yet?" Sometimes after I say "no", she says "I thought I heard someone up in there." I used to try to that there's no one here but us, but I've found out it works better to just say "No, no one is up yet."

But some nights, like tonight, telling her it's not time to get up just won't work. She's up and out of the bedroom almost before I can say anything. It's like she can't hear, or can't understand, anything I say. Usually she's looking for something or someone, or she's going to "wait up for" someone. Sometimes she has a headache, a neck ache, an earache. Sometimes there's no explanation, she just wants up and out of that bed and into her chair, her "other bed"--yes, that's what she calls it sometimes. She often says she's "going to bed" when she wants to sit in her chair, or that she's going to "lie down" in it. (It's a big old rocker, not a recliner.)

Tonight she was hunting something; I couldn't figure out what. After she finally sat down in her chair, she said she would stay there till I could "fix a bottle for her." It took me a few minutes, but I finally found out she had a headache and wanted something for it.

I was suprised that tonight has turned out to be a night of being up all night. My mother was up much later than usual. My sister and brother-in-law were here with her, and I was late getting back from shopping--7:00 p.m. I have a hard time getting my mother to stay up till 7:00; Usually she wants to go to bed by 6:00 or 6:30. So I've seen tonight that keeping her up later doesn't necessarily mean she will sleep longer.

It's 2:00 a.m. now. A few minutes ago my mother was awake and wandering through the house, saying something about "those men." She seemed to be expecting someone and worrying because they weren't here. On nights like this, telling her it's the middle of the night and that no one is coming does no good. Her dreams, hallucinations, and delusions are so real to her.

She slept again in her chair, then she awoke again and walked through the house a couple more times, and now at 3:30 she is asleep again. The last time she was awake, she mentioned "Waiting for U.S."--her deceased husband, my father--I couldn't tell her that he is dead.

Again, she woke and wandered, and now at 4:30, she is asleep again. It's strange, when she's in bed she usually gets up every hour, sometimes more often, to go to the bathroom. This night, she's only gone to the bathroom once since midnight.

I have read all night as I have sat up with my mother. I've just finished The Alzheimer's Sourcebook for Caregiver by Freena Gray-Davidson. It's the best one I've read other than The 36-Hour Day.

I got the impression from this book that the increasing sleeping in the daytime may be one of the symptoms of the more advanced stages of Alzheimer's that my mother is getting into. It sounds like things like not being able to eat, or walk, or being incontinent aren't necessarily going to happen, but rather, it may be an increasing time asleep or in a sleep-like state.

Another thing the book points out is that nursing home care doesn't necessarily have to be, even in the final stages. Many Alzheimer's patients die in the first few weeks in a nursing home. They just never recover from the shock of that kind of change. And if they don't die, many never recover from a loss of function that they experience at that time.

I saw a temporary loss of function in my mother not long after I came home. Just that much change seemed to make her much more confused at night. She didn't begin getting up and staying up at night or her nighttime wandering until I came home. Though she is better in ways now, the getting up at night is only increasing.

She must be protected as much as possible from drastic changes that might upset her. I still wonder, and worry, Did my divorce almost two years ago bring on her stroke and a rapid advance in the Alzheimer's that we had not realized she had? Her stroke was just two days after my divorce was finalized.

Tuesday, November 22, 1994

I think that we have passed the bad time for this month, with not any big problem except around the 6th, and those weren't really so bad, though they might have been if I hadn't backed off and left her alone for a while. Sometimes it seems that's the only thing that will work.

This month there have been very few times when my mother had no appetite, she's had very little incontinence, and only a few nights of being up all night, with no really bad catastrophic reactions. However, the indigestion, or what appears to be indigestion, has been getting worse, and if we don't catch it early enough each time, it gets so bad that she thinks she's dying.

We've had some good times out walking when the weather is nice. We've had some unusually warm and sunny days, and that has helped, but in the next few days winter will be beginning, and I dread all the days when she will have to stay in the house and can't get out. We went through some of that a few weeks ago when it was raining a lot, and she was really depressed during that time.

We never sleep till daylight. I can expect her to get up between 4:00 and 5:00 a.m. each morning if not sooner, but we go to bed early each night--I usually do almost as early as she does, so it doesn't bother me much.

I look forward to having the holidays give her something different and more exciting, but I also dread the way thinking of such things sometimes depresses her. She talks a lot about her parents, and I know the holidays may make her miss them, and my dad when she remembers him, even more.

Friday, November 25, 1994

We had a problem yesterday morning at a time of the month when I didn't expect one, but I guess it could all the excitement of Thanksgiving that did it. My mother thought she was dying, and I insisted she take something for indigestion, she refused, and I still insisted because I wanted her to feel well enough to enjoy Thanksgiving. She hit me then, and I gave up. The hitting doesn't bother me so far-- it doesn't hurt at all. She didn't do it hard, and I don't think she wants to hurt anyone anyway. She just wants to be left alone.

I did that, going to another room with a book to read. In a few minutes she came looking for me, crying and apologizing, saying she was afraid I left. I knew then that she would cooperate with taking a shower and getting dressed to go to Thanksgiving dinner at my sister's. All went well there. Mama had all her kids around her, even though she probably didn't know any of us, and she seemed content.

It's 2:00 a.m. now. Mama just got up and headed for her chair, with no explanations given. I was able to get her robe on her and a throw over her legs. Luckily, I put a nice new warm gown on her at bedtime. She does seem to pick some of the coldest nights to get up. I think it's about 20 degrees tonight. I had left the heater on in the living room and began turning the others on around midnight, so it's warm enough now, but not as warm as it would be in bed.

It's 5:00 a.m. now, and my mother and I have been talking since about 3:00 when she woke up from sleeping in her chair. She had a hundred questions, and I think she repeated each about twenty times. It was like she couldn't understand a thing I said, or that she forgot it as soon as I said it.

She had a dream, I think. At 3:00 a.m. she asked me "When did your daddy die" and "Who was your daddy?" It was like it didn't sink in, no matter how many times I told her, that he had died nine years ago, that he was her husband, and that she was my mother. Finally, I think, I got her to understand that was a long time ago, but she still was convinced that someone had just died. She started asking about "that girl that died", and I think she was meaning me, because she sometimes seems to think there are at least two of us. She's always asking "What happened to that other girl that came with you?" I think she thought one "the girls" left yesterday when I left her alone and went to another room to read. After me answering her about twenty times, telling her no one had died, no one had left, it was just a dream--finally I got her to understand, or perhaps by then she had forgotten what she had been asking.

Saturday, November 26, 1994

We are up about 30 minutes later than yesterday morning--it's 2:30 a.m. (We were up the rest of the night yesterday). I'm so tired. I shouldn't be, because we've been in bed eight hours. But it seems like we were up every thirty minutes for my mother to go to the bathroom. The last time we got up, she asked "Can I live in that chair in there?"

We had a good day yesterday. I read to her, and she even recognized a few words, like "the" and "a" in the titles of the stories in the large print Guideposts my sister had subscribed to for her. The rest of the day we watched Christmas movies, in between naps. I had to have a couple of naps, too. Eight hours of sleep or not, getting up around two a.m. makes me tired the next day. I'm wondering if I'll be able to do it this time, even with a 2-liter of Diet Coke with caffeine at my side. I'm afraid to fall asleep, but I just can't keep my eyes open much longer.

It's 7:45 now. I managed to stay awake till 4:30 this morning, and then I just couldn't stay awake any longer, so I fell asleep on the couch. And sure enough, my mother was up within ten minutes asking me what was I doing lying down there. So I went to fix breakfast. I had got dressed an hour earlier when she was awake and said she was hungry, but I didn't fix breakfast because she fell asleep in her chair again. When I got breakfast ready at 6:00 am she said she wasn't hungry, and she ate only a couple of bites.

A funny thing happened. When she was up and out of her chair a little after 5:00 a.m., she was laughing and said I had the same disease and was worse off than her, because I was talking about chickens when we didn't have any. It seemed everything I was saying about fixing breakfast and her eating, she thought I was talking about chickens. In fact, she had been talking about them herself at 3:30 (She and my dad had raised chickens on the farm for about thirty years), and I had tried to explain to her that there were no chickens raised here anymore. When I told her that again when she brought up chickens, that the old chicken houses were in too bad shape to be used, her laughter seemed to turn into fear, then confusion, then lack of trust for me, and thus later, no eating breakfast. When will I learn to quit trying to explain things to her?

Sunday November 27, 1994

It's now almost 3:00 a.m., and this is the third night in a row that we've been up, though my mother did stay in bed until 2:30. She almost had a catastrophic reaction when I tried to help her put on her robe. I just let her walk away, and then she that she did need it, and she let me help her.

Now at 3:45 a.m., I sit watching her, observing. She's been sitting in her chair for the past hour, hardly opened her eyes at all since she's been there, though she is moving around, sometimes rocking, shuffling her feet, propping her head on her hands.

The nights of being up are increasing each month. She hasn't been incontinent at much. And the catastrophic reactions haven't seemed so bad. Lately when she gets up at night, she just sits in her chair, sleeping off and on, with no more wandering, searching for "the baby" or wanting to "go home".

I'm writing again at 8:30 a.m. At about 4:00, my mother started asking me questions. She seemed to have dreamed that my brother Bob was coming to get her to take her home with him, and that was why she was sitting up waiting. She said he'd sent her a message. I had the hardest time getting her to understand it was just a dream. Then she started talking about wanting to "go home." Finally I realized what she was saying was that she wanted to go back to bed. She said she didn't know how she had got there and she wanted to go back where she belonged.

Monday, November 28, 1994

Last night wasn't bad. My mother didn't get up till 4:00 a.m., and then as soon as she got to her chair, she wanted to go back to bed, saying that no one else was up.

It's a rainy day, and days like this seem to make things worse. My mother has had no appetite today. She didn't eat much at breakfast, and she ate even less at lunch.

My mother was teasing me this morning about messing up her house with the plants I'm growing. Soon the teasing changed into her walking through the house and saying everything was a mess. So I began frantically cleaning house (even though I do keep it pretty clean). She went to sleep, and then woke up not speaking to me, and not eating.

The "bath lady"--a Home Health nurse came then, and after she left, my mother was so mad at her. She said she "cut" her ear with the comb when she was combing her hair. I think it upset her that the aide was talking to me, too. She doesn't like it when the aides and I carry on a conversation. I can see it by the way she looks, and how that look grows the longer we talk.

Tuesday, November 29, 1994

It is 7:45 a.m. and all is well. My mother slept all night, ate her breakfast and let me help her take a bath because one of my sister-in-laws was coming. My mother got her first Christmas present of the year during that visit--a good warm quilted fleece pants and top outfit. She appreciated the gift, and afterwards she kept saying she had to get her something, even though she didn't know who she was. She said once that she was the lady who used to stay with her.

Wednesday, November 30, 1994

I was trying to help my mother get her pants on this morning, and she got mad at me, said she was tired of me telling her what to do. I told her I was just trying to take care of her, and she said no, that I was just bossing everything she did. So I left her in the bathroom to get dressed herself.

She came out after somehow managing to get her pants on herself this time. She went to the front porch, letting a blast of cold air in the door. She turned back and saw me, and she started telling me, proudly, how she had just told the other girl off. I told her it was me (unwisely). She asked what I'd got mad at her about, and why couldn't I get along with her. She said I'd better let her just leave and find some place else to live, that she could find a little place to live and take care of herself.

It's so strange what losing one's memory does to a person. She was the one who was angry, and yet she thought it was me.

If it were like this all the time, I don't know if I could do this much longer. But there are the other times, the good times.

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