Enya

Sunday, January 1, 1995 

We were up at 10:30 last night. My mother said "You need to fix it (the bed) because I'm not getting back in it" as she went straight to her chair, not letting me put her robe on her (which is ok tonight, but it won't be a few nights from now when the temperature drops into the teens).  

It was so funny how my mother woke up from sleeping in her chair about a half hour before midnight. I turned on the TV, thinking it might be ok, and that we might as well see the ball drop at Time Square since we were up. My mother enjoyed that. Afterwards, I asked if she wanted to go back to bed. She said it didn't matter to her. I told her it kind of mattered to me because I needed to sleep since I was going to be cooking a New Year's dinner. So we went back to bed, but just for an hour.  

Something happened this morning that changed our New Year's Day plans. Apparently I used up all the water in the well this morning. After being up at 1:00, we went back to bed at 2:30, and then at 4:30, my mother woke up, finding me asleep, and told me that I should be washing clothes, that we girls weren't working together, helping each other. I did have some washing to catch up on, so I did it.  

So since I'd used up all the water, we decided to have our New Year's get together at my sisters. Everything went pretty well till we got home. My sister and brother-in-law came with us for a few minutes to make sure the well was ok and to look up some genealogical information that my niece wanted. My brother-in-law was in the living room with my mother, watching a comedy show on TV. As soon as they were gone, my mother went to the bathroom and took off her pants, and I saw why she had been looking disturbed. She had needed to go but wouldn't because my brother-in-law was there. She was upset with me as I helped her get into a gown and again when I was giving pills--she said I'd already given them to her (She'd just had a vitamin at supper). She didn't want to watch TV as we usually do a little before bedtime. She looked sleepy, so I asked if she was ready to go to bed, and she said she wasn't, that she didn't think she could, and that I should just lock up the house.  

She had an incident of incontinence just before I woke up this morning, too. Or maybe it was just not being able to figure out how to get to the bathroom. She had made it there, passing up the bedside potty, put the lid down, and then, well--I'm glad I took out the carpet that bathroom had and replaced it with tiles. 

Monday, January 2, 1995 

I got my mother to go to bed at 9:30 last night, and I gave her a second Thoridazine at that time. Then we were up an hour later. I think we might have been at midnight, too, if I hadn't been successful in convincing her it was still time to be asleep. Maybe that second Thoridazine helped. She's to have two at bedtime, but I've been giving her only one, because if I give them to her at the same time, she will be incontinent. Maybe one at supper and another at bedtime might work better. I think two may be too much at times, and at other times one isn't enough.  

An incident of incontinence this morning makes me think this must be a time when two is too much. Also she's been really sleepy and confused this morning and didn't eat breakfast. Maybe the second Thoridazine was too much. It helped me get some sleep for her to sleep more, but I don't like the way she is today. She's been so sleepy, it's like she's hardly waking up all day long. 

Tuesday, January 3, 1995 

It's 1:00 a.m. and we've been up for about half a hour. My mother would have got up an hour earlier, but I told her the house was too cold and that I needed to warm it up, which was true. She had said she had a headache, so I gave her an aspirin. When she got up just now, I had the house warm enough now, but she wasn't happy with me for not letting her up earlier, and she also said "You didn't ever bring me that aspirin, and my head is killing me!"  

After at least an hour of being awake and restless, my mother has now fallen asleep in her chair. She kept saying her feet were cold, so I changed her from socks to the fuzzy warm house shoes she got for Christmas. She complained that the new stool my brother-in-law made for her didn't work because it made her feet cold when she used it. I tried to explain that it was to rest her feet on, not to warm them, and that we'd have to wrap her feet up good to get them warm. 

Friday, January 6, 1995 

There are times my mother needs more Thoridazine at night, and I just have to figure out when those times are. Lately I've been giving her more, the amount the directions on the bottle say to give. She has been sleeping all night till nearly daylight, and I feel so much better being able to do the same. I'm not sure I like the daytime affect though. The mornings aren't good. She doesn't seem to like me at all in the mornings, perhaps because she's still sleepy. She seems to perk up in the afternoons and is kind and loving then. In the mornings lately she's been talking in her sleep as she's sitting in her chair and getting so confused over her dreams. She's also begun refusing to let the Home Health aides give her a bath. I think she is also hearing things I don't say--auditory hallucinations. Today when I was just asking her what was wrong, she said "You don't believe me. I'm not going to go there today. This is going to kill me. I'm not going to go." I wasn't trying to get her to go anywhere, just asking what was wrong and if she was hurting anywhere.  

We went for a walk, and she came back and sat in a straight chair near the heater. I saw she was about to fall asleep, so I suggested that she move to her chair. She said that wasn't the chair she sat in. I fixed her a snack, and she ate it, and from then on everything went ok. 

Saturday, January 7, 1995 

Last night my mother seemed so concerned about me when I got soaked by rain coming back from grocery shopping. We had a strange night, though. She tried to get up to stay ever since midnight. At bedtime she wanted to keep her pants on, saying they would be better than the gown. So I opened a drawer and pulled out the flannel pajamas I'd got her for Christmas, and she agreed to put them on. But then every time she got up during the night to use the bathroom, she's been trying to take the pajama bottoms completely off.  

Everything my mother said when she got up this morning told me she wasn't understanding a word I said. It was as if she were still talking to someone from a dream. As she was using the bathroom, I was trying to tell her to keep her pajama bottoms on, not to pull them completely off, and she said "Well this place is mine! They can't take it away from me! I don't see why they're trying to!"  

Apparently whatever it was had been forgotten by breakfast time. She ate half her breakfast, and then went to sit in her chair, where she quickly fell asleep.  

This afternoon she has been saying "I hope they don't make me sleep on that bed in there tonight". It does no good to tell her there's no "they", that there's just me, or that we need to sleep in the bedroom because I need my sleep, too.  

It's amazing how different she is sometimes when others visit. A friend visited today and she talked so much more like normal, and she even seemed to identify me as her daughter. The same thing happened a little latter when my brother was here. I can see why some people might think there isn't that much wrong, and why even I didn't think it was as bad as it was till I moved home. 

Monday, January 9, 1995 

I gave my mother an extra Thoridazine last night when she got up very confused and scared. Now I wish I hadn't. She slept practically all day and was extremely confused whenever she woke up. I was hard to get her to understand that it was time to take a bath this morning when the Home Health aide came. Then in the afternoon when she woke once, she was so stiff or dizzy (couldn't tell me which) that she had to have help walking. If I hadn't given her that extra pill last night, I think we probably could have been walking around the house enjoying a beautiful sunny day, so it definitely isn't worth it, just for me to get a little more sleep at night.  

Tonight I've tried it without the Thoridazine, because of what it did to her today. So we are sitting up all night. Now she has starred at me for about an hour, and then she asked "Who are you?" I asked her if she would like to go back to bed, and she told me "I never sleep in a real bed; My legs hurt if I do." So we will be up all night, but that's ok. Hopefully we will have a better day tomorrow. 

Tuesday, January 10, 1995 

What a nice surprise I got this morning! At about 5:00 a.m., my mother decided she wanted to go to bed. I had lay down on the couch about 4:30, dreading what might happen, but yet knowing I wouldn't be able to function if I didn't get just a little sleep. Then a few minutes later, she decided to put me to bed. We went to the bedroom, and she was trying to get me into her bed. I told her to go ahead and get in her bed and then I would get into the other one after I turned off all the lights in the other side of the house. She did, and we slept peacefully until 7:30, except for her getting up to use the bathroom a couple of times. One time when she got up to use the bathroom when was so cute, talking like a little girl, and she asked if I was going to play with her.  

She's that way sometimes--the lovable, huggable, sometimes mischievous little girl. Sometimes I want to just sit and play with her. 

Wednesday, January 11, 1995 

My mother has times when her feet, hands, and stomach swell badly. Those times also seem to be when she is up more at night and when she is more confused and easily upset. Yesterday I noticed a rash on her upper abdomen and lower chest, obviously caused by the swelling. With all this, no wonder my mother gets so confused and upset at times.  

When the Home Health aide was here today, my mother said she didn't feel like getting a bath, so the aide just gave her a sponge bath, and she told me about some cortisone cream to get for the rash, and suggested I call the doctor about a prescription. I'm waiting on a call back from the nurse now.  

Besides all this, my mother seems to have indigestion, and I've given her something for that. I wish we could get all these other problems solved. Alzheimer's is bad enough without the person with it not feeling well and not really being able to tell you exactly what's wrong.  

Thursday, January 12, 1995  

Somehow I had a feeling this was going to be one of those nights. My mother was too fidgety at supper time, and while we were watching TV, she was constantly moving her hand or food, patting the chair arm and the floor. She was up about 11:00 p.m., but when she looked into the living room she said "There's nobody up", and I breathed a sigh of relief as she went back to bed. But then she was up again at midnight.  

The communication problem is getting really bad at times, especially at night. Tonight I was trying to help her get her robe on, and she got really irritated with me, saying she needed "mache" first. I thought she meant matches, so I showed her how I turn the new heaters on and don't have to use matches to start them. Then she angrily said: "I need mache! I have a headache", and I said "Oh, you need an aspirin", and I got it for her. I didn't succeed in getting a robe on her, but I put it over her shoulders and a wrap over her legs. It is a relatively warm night for January, but a few degrees below normal in the house does feel chilly.  

The Home Health nurse and I have both wondered if my mother could have congestive heart failure, because of all the swelling. It was about time for my mother's visit to the doctor anyway, so we got it scheduled a little early--tomorrow afternoon. Maybe something can be done that will help.  

Friday, January 13, 1995  

We were at the doctor's about two hours. My mother had her stomach poked and prodded and x-rayed, too. She had an ECG and blood tests. And she was good through all of it. One more test will be Monday at the hospital--a CAT scan. But so far it sounds like nothing has been found. The doctor seems to think the muscles of her stomach just aren't working so well any more, and that's why it is large and getting larger. He also sees it as fat, but I watch her diet carefully, and almost everything she eats is practically fat-free, well, except for some of the Christmas goodies. She hardly eats anything much of the time, but she suddenly became very hungry when she saw the holiday cookies and candy.  

I'm going to watch her diet even more closely. The Home Health nurse had good news for me about her cholesterol, which had been high. Now it's down a lot, into normal range. Her tryglicerides are up though. I've got to get those down, too.  

Sunday, January 15, 1995  

There are times when I feel my mother hates me. Again it is Sunday, and my mother doesn't want to go to my sister's for Sunday dinner. She says she doesn't want to go because she's about dead, which leads me to believe she has indigestion, but she won't take anything for it. When says she can't go out in the cold. She says to go on myself, that she likes it better when I'm not here. I say I can't. I tell her that I take care of her, that she's my responsibility, that she's my life. She says she liked it better before I came playing my music. (It's just soft instrumental music, which she usually likes). She says she can rest better when I'm not here. (She must think I'm not here when I'm in other rooms of the house.)  

My mother was so good the past few days, and she didn't even give us any trouble with going to the doctor on Friday. And now we go to the doctor tomorrow--for three hours--for a CAT scan, and I dread it. She's not supposed to eat anything from midnight tonight until after the CAT scan, and I dread that, because I'm afraid things will be worse with her being hungry.  

She also said a word this morning that I didn't even know she knew. I can take anything else, but I don't like hearing my mother say words like that, words she would never have allowed me to say, words she would never have said herself if she were in her right mind.  

It's just the disease; it's just Alzheimer's. It's just the disease; it's just Alzheimer's. I keep telling myself that. She doesn't hate me. (How could she when she doesn't even know me?) It's not my mother saying these words. It's just the disease; It's Alzheimer's.  

Monday, January 16, 1995  

My mother was fine this morning with getting a bath and getting dressed. Then she started asking questions about today's doctor's appointment and getting more and more nervous. Then she started getting angry. She said she didn't like how her new pantsuit fit and that she didn't want to wear pants. She wanted her old clothes. She told me I treated her "worse than a dog". She said she didn't want me to go with her to the doctor today. When I told her that I love her and wanted to go, she pushed me away from her and said "Well, I don't love you!"  

My sister told me to take the whole day off today, go shopping if I wanted to, while she took my other to the doctor. Maybe I will after I do a little house-cleaning. I'll go get the bench that I'm going to put in the garden for my mother. Maybe I'll eat out and relax a little. I'll buy groceries, and I'll go to the bookstore and look for some books on Alzheimer's.  

When I left her alone for a while this morning and went to another room, she asked: "Do you swear my mother gave you her name?" Sometimes she seems to think that I'm adopted. I think she started thinking that when my sister tried to explain to her once who I am. Now at times she seems to think I was adopted by her mother.  

Tuesday, January 17, 1995  

I went shopping yesterday, bought the bench, and went out to eat. The waitress in the restaurant saw me crying and asked what was wrong. I told her, and she said she knew what I was going through, because her dad had Alzheimer's.  

It's that way everywhere, it seems. Whenever I'm out shopping and someone starts taking to me in the check out line, and I mention that my mother has Alzheimer's--almost everyone has someone in their families who have it. Usually I can talk about it without crying in my coffee as I did today.  

The day went fine for my sister. She said my mother didn't say anything about me other than a "We've had it already today" when she came in. Something that my mother said made me think she thought I was an ex-daughter-in-law from twenty years ago--she called me by her name.  

We were up much of the night again, and I guess that's understandable with the change in routine because of all the doctor's appointments. Those are over now, and we will just have to wait for the results of the tests.  

Maybe we will get back to normal now. There are good things to look forward to. Spring will be here in a few months. I want to make the garden come alive like the one in a movie we watched recently: "The Secret Garden". I think my mother will enjoy the flowers.  

My sister said she found some daffodils blooming already in her yard. They are earlier than ever and will probably be covered by snow a few times. But it won't be many more months. Yes, that's something to look forward to.  

Thursday, January 18, 1995  

My mother spent much of yesterday worrying about problems that don't exist. I had tried to encourage her to go back to bed before daylight because it was warmer in bed. That made her think there was a problem with the heaters, that we were out of gas. She wanted me to call and order gas right then, at 3:00 a.m. She worried about that for an hour. Then at 4:00, she got up to wander through the house, looking for her mother.  

At breakfast she ate well, but she got upset with me. She asked if I fed the other girl breakfast, and when I told her I was the only one here, she said there was another girl who stayed with her last night and was so sweet to her.  

Later her head was killing her, she said, so I gave her something for that, and then she started holding her chest and throat, so I knew it was indigestion, and this time she let me get her something for that. She slept a while after that.  

Today it's a different worry. At 3:00 a.m. she got out of bed upset because she thought there were people coming in the house all night long. It is raining outside, and there's a thunderstorm beginning, so that may be what has upset her this time.  

Friday, January 20, 1995  

I can't figure out what kind of bad dream my mother has had this time. It's 3:00 a.m., and she keeps saying that there's no where to sit in this house (though I did get her to sit in her chair just now, that she's "getting so big that they are going to have to cut" her "apart and kill her". (Is she worried about the doctor's visit and the test results?) and that I need to stay away, not get close to her or I'll catch what she has.  

Yesterday morning she got up at 4:30 a.m., complaining that I never did any work around her. I assured her that I would clean the house from top to bottom when daylight came, and that worked--she went back to bed and slept till 7:00 a.m.  

I wish I knew something to tell her that would work this time. She's been trying to get up since 9:00 p.m., each time saying she "thought someone was up in there".  

I've been finding out lately some things I do that upset her. "Just sitting" she said, when I write in my journal, open my mail, and read--"Just sitting and not working," she says. She thinks there are at least two of us here, one working and the other not, and yesterday morning when she found me sleeping, she ordered me to do my job and make sure this house was run right. I don't think she likes me getting mail here either, so I've got to not open it in front of her anymore. Another thing--when my sister visits, she doesn't like for us to sit and talk. She says it makes her mad because she can't hear what we're saying. I suspect it's really because I'm acting like one of the family, which I think is also one reason Sundays at my sisters are sometimes a problem--she thinks I'm a hired person, housekeeper, I guess, and I'm going along to a family thing. One other thing she said made her mad: When the "other girl" is going to wash dishes but she doesn't do them, just leaves them sitting. Which means, after I've washed them I put them in the drain rack and let them dry instead of putting them away. If my mother helps with the dishes, her job is drying them and putting them away (though she asks where each piece goes), and she doesn't think they have been washed if they aren't put away.  

Sunday, January 22, 1995  

We are up again at 3:00 a.m. I think (I can't remember--the days and nights all run together sometimes) we slept till nearly daylight yesterday, though during the night there were a couple of times my mother work up telling me she hadn't been fed any supper. I did feed her supper, of course, but she had not wanted to eat, telling me that she had already eaten. Tonight when she got earlier up she was upset with me. She said there was someone in the room talking about peaches or pears. I told her it was winter-time and there wasn't any peaches or pears right now (My mother canned peaches, pears, and everything else she and my dad grew on the farm and in the orchard all her life). Then she said Myrte (her dead sister Myrtle, or my sister Myrtle Lee--see why it's so confusing sometimes!) had called her and she had to get up. Saying it was still three hours till daylight only provoked a stream of hate filled words including the threat that she was going to get rid of me. She wouldn't let me put her robe on her. Now she's sleeping in her chair.  

I just can't do it this time. I just can't stay awake. I've got to find a place where I can get a little sleep on the floor or the couch in the next room where my mother can't see me and I can still watch her. If I try to sleep in the same room, she's up as soon as I fall asleep, angry with me for not being busy working.  

Tuesday, January 24, 1995  

Yesterday was such a good morning--so peaceful. My mother stayed in bed till around 6:30, and then we watched rain begin turning to snow around 7:00 a.m. It snowed for an hour, and though she says she doesn't want snow, I think she really appreciated the beauty of it as if fell so heavily for that hour. After breakfast, she fell asleep, and unfortunately, the snow had melted by the time she woke up. She awoke tormented by something she had dreamed and thought was reality, and our peaceful day ended as the confusion haunted her for the rest of the day.  

And now we have been up since 3:00 a.m. again. She says she has a headache. I've given her something for it, and I'm going to try to stay awake with her. After the confusion of the day, I'm afraid these wee hours of the morning may get bad. She keeps having dreams, even in the daytime now, about "the girls" staying here, not working together, not getting along. She says she can't stay here any longer, can't "do this job", and she's going to talk to "that man" (can't figure out who she means--there's no men around ever except my brothers and brother-in-law), and that she's either going to leave or have this house to herself.  

Thursday, January 26, 1995  

We've had two good nights in a row, except for one strange event last night. It started when she went to the bathroom all the way in the other side of the house. When she woke up she told me she had seen someone (a child, I think) jumping over my bed. I told her there was just the two of us here, and that was when she got upset with me. She started walking, and I started turning on lights (most of the lights are still turn on by pull-chains from the ceiling in this old house), and when I raised my hand to turn them on, she thought I was raising it to hit her. (I have never done that. She is the one who has done it to me.) She complained about me all the way to the bathroom and back, saying how I couldn't see or hear either one (because I didn't see or hear the child she saw?), how I wasn't fit to take care of anybody, how I wasn't doing anything wrong. When we got to the bathroom and I turned the heater on, she complained about the heater being on, said that was why we didn't have heat in the day time. (No heat in the daytime? I don't know where she got that idea.) I didn't respond to anything she said, just stayed with her and helped her in the bathroom and then back to bed. I think it's best that way, because sometimes anything I say will only upset her.  

Sunday, January 29, 1995  

It's another stormy Sunday morning. My mother has refused to go to my sister's this morning. It seems to be indigestion again, and I've given her something for it.  

Our nights have been good lately except that most nights she is getting up between 9:00 and 10:00 p.m., and wanders through the house, looking for someone who was in her dream. The night before last was pretty scary. She said she could "just stomp" me. It sounded like she dreamed I had come to kill my "sister". Then she thought there was someone in the house that was going "to kill us all". So I had to turn all the lights on and walk through the house with her to prove there was no one else here.  

Monday, January 30, 1995  

I was hoping it wouldn't be one of those nights, but I had a feeling it would. We are up at 2:00 a.m. I noticed when I was getting her ready for bed, my mother seems badly swelled again, and everything seems to get worse when she is swelled.  

I didn't get the house warm enough fast enough, and I'm sitting here shivering and feel a sore throat coming on. That's the last thing I need--a cold now!  

Tuesday, January 31, 1995  

My mother was really confused yesterday. Once she thought I was an old friend who had come to visit her. A couple of other times she asked me who I was. When she does, I never know what to say. I know she won't believe the truth, and sometimes it upsets her, but what else can I tell her?  

It hasn't been a good morning so far. I'm the one who needed the medicine for indigestion today--with chest pains so bad I felt like I was going to die. Now I can see why my mother thinks she's dying when she had it.  

We were up at 4:30, which was nice compared to 2:00 or 3:00 a.m. But breakfast didn't go well. Nothing tasted good to my mother this morning. (It was the same way last night. She said she didn't want it, that it didn't taste good. She had eaten the same things at lunch with no complaints.) She just played with her food and ate only the bananas off the top of her oatmeal and cereal and complained that the muffins were hard. That's ok. I will bake some fresh bran muffins at snack time and try again then.  

The doctor just thinks the swelling is fat and that she must be eating a lot, but actually she's eating very little, and I can't figure out why she's gaining weight. The test results showed that my mother was ok, and no congestive heart failure, so it seems the Home Health nurse and I were both wrong in suspecting that. The doctor gave no clue as to why she is swelled, though he says the muscles in her stomach just don't work well, there may be a rupture, a hiatial hernia, and I guess that's the reason for all the indigestion, for all the gas that the nurses say they hear whenever they check her. But why can't something be done to stop it--I mean she doesn't need this to deal with as well as Alzheimer's.  

We have another appointment soon, this time with her neurologist. Maybe we can get some help with the night wandering and confusion--surely there's something that can make all that not quite so bad.

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