Enya

Tuesday, August 23, 1994

I guess I've always been a dreamer, always had such high hopes, always thought I could save the world. With every year I've lived, with every dream that has died, I've come to realize I'm just one more human, struggling to survive each day, and I cannot change the world.

Yet, I thought it would be different this time. I'm my mother's baby, her little girl, who she loved so much. Surely I'm the one person who could make it all better for her. All I had to do was to quit school and come home to live with her, and she would be all better.

I couldn't have done otherwise, after hearing her wish for that so much, and seeing her cry so hard as I left at the end of each visit.

So I came. My announcement on Saturday along with the flowers brought the desired effect. She cried and laughed and grinned from ear to ear all day. But it wasn't long until that wore off. Sometimes I think she doesn't know me at all.

My dreams of making my mother all better show how little I knew about Alzheimer's, I guess. But I had to do this. And it is an adventure. I never know what will happen each night, how many times she will get up thinking it's morning, or the things she will say in the middle of the night. I'm off now, to another adventure...

Saturday, August 27, 1994

I have been here for a week now, and I am over my initial shock at my mother not knowing me, and I'm over my What have I done? phase of earlier in the week. This feels good. This is good. For a change, I'm giving a little of myself, and I like it.

My mother and I are getting along just fine. There are times when things don't go terribly well, but I'm learning what works and what doesn't. I've even been rewarded a couple of times in the past two days with her saying, "I love you, and I'm glad you came to stay with me."

That's worth it all, all the waking up at night, all the trouble getting pills down, and trying to get her to eat when she doesn't want to, and all the endless questions, same questions over and over about people from the past and about other people she thinks are living in this house.

Yes, I'm glad I came home--very glad. I hope I can help make the rest of my mother's life just a little more pleasant.

Sunday, September 18, 1994

I have been with my mother a full month now. Only in the last two days (and nights) have I seen what my sister had told me about--the bad part of some sort of cycle my mother goes through that seems to happen about the same time each month (the full moon, maybe?), when my sister describes our mother as actually being mean.

I slept no more than three hours last night. Tonight I slept only an hour, but I don't dare go to sleep now, at 2:00 a.m., even though my mother has finally fallen asleep, not in bed, but in her chair in the living room. I don't dare try to get her back to bed. When I did that last night, it took over an hour of walking through the house and even outside to get her calmed down. She was looking for "that girl" who would "take me home and show me where to sleep." Every time we walked through the bedroom, I showed her the bed and asked her if she wanted to lie down. But I couldn't convince her that this was her home and that it was her bed. Finally she went to sleep in her chair between 1:00 and 2:00 a.m., and then she got up at 4:00 and when to sleep in her bed until 6:00. I got two of my three hours of sleep on the couch from 2:00 to 4:00; then I couldn't go back to sleep.

Tonight she got up looking for "the baby". She had already expressed some anger towards me when I helped her go to the bathroom. Then she had a dream and woke up talking about something that was dangerous for the baby, that would poison it. She wandered around the house for a while, and then just before she fell asleep in her chair, she told me "You watch the baby; Don't let anything happen to it." I worry that one of these nights she will wake up looking for "the baby" and not finding it, think I've done something to harm it. All I can do is sit up and watch her as she sleeps, hoping that when she wakes she will have forgotten, for tonight, her obsession with "the baby."

I'm so tired. But I have to stay awake. Most of the time when I do fall asleep, my mother wakes and is angry because I'm not doing something she thinks I should be doing.

I don't know how long I can do this. But I'm still glad I came. I will do my best; I will try to take good care of my mother for as long as I can.

Monday, September 19, 1994

Yesterday was a wonderful day, even though it didn't get off to a pleasant start. I didn't get any more sleep until 7:30 last night when my mother went to bed, and I too, fell into bed exhausted, without bothering to take a shower.

After sitting up most of the night, at 3:00 a.m. I thought she was going back to bed, but when we got there, she wouldn't go; She said she couldn't, and she just sat there. So we went back to the living room, and she sat in her chair again.

At 4:30 she seemed wide awake, so I thought I would go ahead and start breakfast, because most mornings she was up by this time anyway, even if she did spend more of the night in bed.

But by the time I got breakfast ready, she had fallen asleep again. I waited until she woke up. Then I asked her to come eat breakfast. She said no, that she wasn't hungry.

I tried again at 6:00, but she still said she wasn't hungry. I asked her about getting a shower and getting dressed, because we always went to my sister's (next door) for Sunday dinner. She said no, she wasn't getting a shower, she wasn't getting dressed, and she wasn't going anywhere all day.

I waited an hour or so before trying again to get her to eat breakfast. Finally around 7:30, when I asked her if she could eat a little breakfast, she said "I guess so." She ate about three-fourths of her breakfast before saying she couldn't eat anymore (usually she eats half or less).

After breakfast, I asked her again about getting a shower, and she again said no. I did the dishes and then sat by her for a while, and maybe an hour later, I asked her again. She still refused the bath, but she agreed to put on a dress. When I asked her about going to my sister's, the answer was still no. Each time, the way she responded and the mumbled words made me wonder if she really knew what I was asking.

She went out to sit in the swing on the front porch (a favorite place) for a while. Then she came back and asked me what it was we needed to do, why did I say we needed to go to town. I told her that we didn't need to go to town, but we'd been invited to my sister's, her other daughter's, for Sunday dinner, just like always. She said she didn't feel like being around so many people. (There's only my sister and her husband).

She walked through the house and out to the back yard, and I followed her. We were going in the direction of my sister's house, and she asked "Is it too early to go to Myrtle Lee's?" I told her no, that I just needed to run back and lock the door. I did and quickly called my sister (I had called her a few minutes earlier to tell her we weren't coming.)

It was a wonderful day! My mother ate well, and she didn't get restless till mid-afternoon. Though she enjoys being at my sister's once we get there, she often wants to leave as soon as we've eaten, if not before. But it's good for her, I think, and it gives me a break, the only break I get except for one Saturday a month shopping and when my sister visits each weekday afternoon for about an hour when she gets home from work.

I've had some rough times already, and I know there will be more, but days like this one turned out to be make it all worthwhile.

Friday, September 30, 1994

It's now 4:30 a.m., and I've been up with my mother since midnight. Actually, we've been up and down since midnight--this is the third time that she's come to sit in her chair in the living room. This time she's having one of what my sister calls her "dying spells." It appears to be indigestion usually, but this time there seems to be some neck and ear pain, and she's fallen asleep now in her chair using a heating pad.

Every time the Home Health nurse comes, my mother seems to be in good shape, good blood pressure and temperature. The nurse always hears a lot of gas in my mother's stomach, though. One day this week I called the nurse because my mother was having chest pains and thought she was dying. The nurse came, and everything was fine. She got her to take the Alka-Selter that Mama wouldn't take for me, and then she started feeling great, attributing it to the nurse who came and saved her life.

Until this night, she's been sleeping better at night. I don't want to give her more Thoridazine unless I have to. Sometimes more seems to make her more hyper instead of relaxed.

Sunday, October 9, 1994

Things have been going along very smoothly the past couple of weeks, except for an occasional "dying spell", as my mother has a bout with indigestion. Lately there have been some nights of getting up at midnight or 1:00 a.m. to sit up the rest of the night, but no "catastrophic reactions" (the term the books on Alzheimer's use) of any major proportion until tonight. I really brought on a big one of those today. And, as the books say and as support group people have told me, it is indeed the caregiver who usually brings them on.

This time it was not my voice or attitude or anything I was aware of until tonight. This morning, after I had helped my mother get a shower and get her dress on, I sprayed a little perfume on her dress as I was spraying some on me. I had been noticing an odor, and I just wanted her to smell nice when we went to my sister's for Sunday dinner.

Apparently she was allergic to the perfume and suffered all day with burning and a rash, and she wasted no time in having a catastrophic reaction as soon as we got home, telling me she had blisters all over from the "powder" I had "thrown" on her this morning, and that I was treating her "like a dog."

I tried to explain, to tell her I didn't know she would be allergic to it, gave her a soapy cloth so she could wash herself off, helped her change into a gown, and the more I did, the more her angry words and actions continued. She didn't hit me, but she drew back her hand as if she were going to--this she has done a couple of times before.

She finally calmed down after I helped her into a gown and put on a "Little House on the Prairie" video for her to watch. Though I know I'm not supposed to show emotion, I did let a few tears run down my face as I was sitting there with her. I hoped she wouldn't see, but apparently she did. She started apologizing, and going on and on saying she was sorry.

She is sleeping now, but I can't. I don't know what else might happen tonight. I'm not doing so well with this. I need to be completely non-emotional, to speak always in a soft voice, and to stop trying to explain, because it explaining doesn't work and only seems to confuse her more. I have so much to learn about Alzheimer's. I need to know everything I can find out now before she gets worse.

Thursday, October 13, 1994

I decided today that I won't be my mother's daughter anymore. I'll be whoever it is she thinks I am. And in that, I think I may have discovered how to get along with her. It's also the only way for me to get myself past the feelings of rejection. Somehow I think she senses those feelings but she doesn't understand them. So both of us will be better off if I can just be her hired girl, or one of her hired girls, as it sometimes seems she thinks I am.

I have one success story already. I haven't been able to get my mother to eat more than three bites of her meals for the past three days. About an hour ago I got her to eat a whole bowl of oatmeal (at my second attempt today of trying to get her to eat breakfast).

I've noticed the home health aides can usually persuade her to let them give her a bath, and I've noticed how they talk to her "...honey, sweetheart, Miss Jessie...", so I took the food to her and did that, and she ate it all.

I think, too, that I've learned the secret of smaller, simpler meals. A larger breakfast, with more different foods, even if there's just a little of each, looks like too much to her, or is confusing to her, and she just won't eat it. I've found out she won't eat much in a regular size bowl either, but if I put it in the smallest bowl I can find, she will usually eat it all.

Another thing--I will stay away from her if it's not meal time or snack time or pill time, unless I can get her to take a walk outside or go to the front porch. She seems to want to be left alone as much as possible. She's told me so at times.

I'm feeling good about this new me. I think this is what some of the books call "distancing yourself." They say for some people it takes longer than others, but it has to come at some point for a person to be able to continue to take care of a family member who has Alzheimer's.

Monday, October 16, 1994

Does Alzheimer's affect the brain at all like schizophrenia or a multiple personality disorder? If not, why does my mother seem like several different people? She changes personalities every time she wakes up from a nap. Sometimes she's a playful little girl. Sometimes she's an old woman about to take her last breath. Sometimes she is loving. Sometimes she is cruel, almost violent. Some days she likes certain foods, and other days she hates those foods. Is it just a matter of memories, of waking up with memories from different stages of her past, and of her dreams as well? Sometimes it really seems like there's different people there.

Everything seems so backwards, too. Sometimes she stays up all night and then sleeps in her chair all day. She even makes comments about it being night sometimes when it's in the middle of the day. Sometimes when I tell her to put her dentures in, she tries to take them out. She often does the opposite of what I tell her she needs to do.

And she's slipping more everyday. She can't find the bedroom or bathroom. She can't turn the water on and off to wash her hands.

I've been here two months now. I wonder how much longer we'll be able to keep on going, just handling the day to day things. I don't want it to end. In spite of it all, I love being here. But can I handle it if it gets worse, or I should say, when it gets worse.

Thursday, October 27, 1994

Every time my mother has one of these "dying spells" (indigestion?), I get so scared. She wants all her kids around her, wants things settled, says she's going this time. I think Please, no, I'm not through painting the kitchen, and I still have to put down the new kitchen floor. She hardly notices, but she would be so thrilled if she were still herself. I've got so much to pay her back for; I need a year with her, at least. I want to see her eyes when she sees the Christmas tree, and when she sees the flowers next Spring.

I know it's just indigestion, and I know she'll be better after I get her to take something for it, but for a while each time she really does look like she's at death's door. She was okay for the rest of the day after she got better from her indigestion today, but she slept a lot in her chair.

Friday, October 28, 1994

We had a bad night last night. We were up at 2:45 for the rest of the night. I think I can see a pattern from the notes on my calendar. My mother seems to be fine till the fifth through seventh of the month, and beginning then she gets worse until sometime between the ninth and seventeenth when there are a couple of really bad catastrophic reactions. Then she's fine again till somewhere around the 27th to 30th, when there are at least a couple of nights of sitting up most all night.

Saturday, October 29, 1994

There is some kind of cycle here. Also there seems to be some kinds of relationship between the different factors. During the period she's in now, my mother doesn't want to stay in the bed, but she does sleep more soundly, even in her chair, so much so that she is incontinent.

I'm still puzzled as to why she wants to sleep in her chair. Why does it seem a torture for her to sleep in the bed and so pleasant to sleep sitting up in her chair? Just one more of the many things that is backwards, turned around, opposite of what it should be.

I'm fascinated by this illness. There's no way I would give up now and allow her to be put in a nursing home--not yet. I have to observe, to write down, to discover the cycle, the relationships. I have to understand Alzheimer's, for her sake and for mine.

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