Friday, December 1, 1995
We had a bad night again last night. After going to bed, my mother got up every ten minutes or so, sitting on the side of her bed and talking, but saying nothing I could understand. She seemed to be in pain, so I got her something for indigestion. Then I got the big wedge pillow to see if she could try leaning against it to sleep. But she didn't. She kept sitting upright and talking, complaining about something. I couldn't get her to go to the bathroom, and if I got close to her, she would hit at me. Finally around 9:30 p.m., I got her to go the bathroom. Then she went to sit in her chair for the rest of the night.
I called my sister before I went to bed, and she agreed to let me have three more weeks with my mother. The nursing home hasn't officially approved it all yet, but they probably will in the next few days. I can go through whatever happens with my mother in the next few weeks just to have her with me that much longer and for us all to be together for one last Christmas. I don't think I could bear putting her in a nursing home just before Christmas.
Saturday, December 2, 1995
We were up just three hours after going to bed, with my mother hitting at me and pulling my hair. I couldn't get her to understand that she needed to use the bathroom. So she went to her chair, and she got me to understand that we would be sitting up the rest of the night. That's ok. I don't have much longer to be with her, so I will take the remaining time however it comes.
Monday, December 4, 1995
We were up at 1:00 a.m. this morning. The night before, it was at midnight.
We have my mother's appointment with the nursing home's doctor today. The nursing home has accepted her. I'm not sure yet whether they mean for after Christmas or sooner. The others in the family seem to think we should go ahead and get it over with. But I just can't.
I don't want to put her in the nursing home, period. I've got nothing better to do than to take care of her. But I have lost fifteen pounds and am looking old and tired. I am so very tired and I can feel myself running low on patience with her. This is why I must let her go.
Without asking much at all the day she came, the person from the nursing home who had visited here told my sister-in-law that my mother was "in bad shape".
I think I realized that more than ever on Friday when she didn't recognize my brother Bob after she had been asking about him and wanting him to come. She even fell asleep when he was here. Before she had always seemed to know him even when she didn't know anyone else.
Tuesday, December 5, 1995
As I feared, with the overstimulation in the afternoon from a doctor's visit, my mother would stay in bed for only an hour last night. She was hyper before going to bed, and still was when she got up an hour later. She seemed to be in a good mood, though. She sat in her chair and patted her foot, and seemed to be happy, but just didn't want to be in bed.
The day yesterday went pretty well with no major problems. The only problems at all were before the doctor's visit, and then just a little afterwards, because she was so tired when she got home.
My sister and I were impressed with the doctor who will be looking out for our mother in the nursing home. He seems like someone who will really take time for his patients and who cares about them.
Something funny happened when we were there. We saw a lady who was nearly my sister's age and they had known each other in high school. My sister is 59, and she was 54. She asked my age, as if I were around the same age and in high school at the same time. I've only just turned 40, but I'm graying fast, have lost fifteen pounds, and I'm beginning to wrinkle. Funny, everyone used to think I looked so much younger than I really was.
Wednesday, December 6, 1995
We were up again at 1:30 a.m. It really is every night lately. The night before last, though, we were up for only an hour at 7:00 p.m. My mother tried to get up about 11:00 p.m. and 1:00 a.m., but somehow I talked her out of it. I told her we couldn't do anything about what she was talking about at night, but we would take care of it all when daylight came.
Again last night, she wouldn't use the potty when she got up, though I knew she needed too. Sometimes lately she won't do it when I take her to the bathroom during the daytime either. When she gets there she doesn't seem to know what's she's there for, and doesn't seem to understand when I tell her either. She just talks about other things and responds to me as if I'm talking about something completely different. At times, it's like there's no ability to communicate at all.
Last night, though, we had a really good evening just before bedtime. It made me wish we hadn't made this nursing home decision. My mother was more like she used to be. After eating well at supper and taking her medicine, she and I enjoyed an hour of a good movie with her holding my hand as she used to. She even told me she loved me, and she gave me a great big hug just before she crawled into bed.
Then a few hours later, though she wasn't hitting at me this time, she did get very angry with me when I tried to get her to use her potty. She did go back to bed around 2:30 a.m., but she was up again at 4:30 a.m.--same thing--potty trouble again.
Something different this time, though--she tried to get me to do it instead. It was the same thing again when I tried to get her to go to bed; She tried to get me to crawl in her bed. I told her, no, that she had to do it first, but she kept on trying to get me to, as if she were the one taking care of me. Sometimes she does that, and sometimes she's trying to get some invisible person to do something. Sometimes when we go to the bathroom, she thinks she's taking a child, it seems. A few times when she's been eating, she has poured a little milk on herself, saying she was "giving it to the baby."
Thursday, December 7, 1995
I thought we were going to make it through the night without getting up to stay last night. My mother had been getting up a lot to use the bathroom, but she had been going right back to bed. Then the last time, at 2:00 a.m., she got right back up.
But that's all right. Assuming we put her in the nursing home the day after Christmas, I have less than three weeks with my mother. Anything she does is ok.
Friday, December 8, 1995
My mother got up at 9:30 last night. For an hour before that, she had been getting up and sitting on the side of the bed. She would lie down and then get right back up again. After sitting from her chair from 9:30 until midnight, she got hysterical about something, said something about me being mean to someone, and insisted I call my sister. As my sister was coming in the door, my mother told me that she didn't want to live in my house anymore and that the reason she wanted me to call "them" was so they could take her home, and she said "I'm not staying here all night." When my sister got here, all she could say was "That crazy woman!", meaning me, I guess. My sister listened to her and somehow got her calmed down and back in bed, but not without problems. On the way to the bedroom, I guess for a minute she thought my sister was me, and she told her "Get out of my house!"
After that, she was fine and slept until 3:00 a.m. when we had a potty problem, and she got hitting angry when I was trying to help her, and again afterwards when I tried to help her cover up in bed.
Saturday, December 9, 1995
We were up at 1:30 a.m. this morning to sit up the rest of the night. My mother was calm, though, and it was fine with me to sit up. Lately I can't sleep well anyway, and I might as well be sitting up. I can write about my feelings and sort them out and maybe prepare for what is going to happen.
I was so afraid that when I called my sister at midnight Thursday night she might say "This is it", and insist we go ahead and put our mother in the nursing home now. But she said "The decision is still yours", and it's still ok to hold off until after Christmas.
I'm wish I hadn't made the decision at all. I'm so scared of how going to the nursing home will affect her. Even at the grocery store yesterday, the boy who loaded my bags of groceries into the car shook his head and said "They go down after you put them in the nursing home. I don't know what it is, but they go down." I thought, Thanks a lot, I really needed to hear that, now the decision has been made and I can't go back on it. How I wish I could go back on it now.
Monday, December 11, 1995
We've managed to stay in bed one night (Saturday night) until just before 5:00 a.m. My mother woke up really confused, though we did make it through breakfast ok, but she kept talking about being afraid of something here and she wanted to be out of this house. So I thought this was a good time to take her to my sister's, and I called, asking if I could bring her extra early for Sunday dinner. My sister said to just give her time to get dressed and then bring her on. That was wonderful for me. I needed to make some phone calls, talk to some friends I'd neglected while taking care of my mother, because it's been just about impossible to continue to call and keep in touch. I needed to talk to them about what we're going to do--put my mother in the nursing home. Maybe I just needed someone to tell me I wasn't doing the most awful thing in the world. And they did. They assured me that it would probably be best for her, and that I had already done my best.
We were up at 2:00 a.m. this morning to sit up the rest of the night, but that was all right. I still needed to do some thinking, and I don't think I could have slept anyway. I stay awake and toss and turn long after we go to bed each night lately.
I'm so scared. Changes affect my mother. Just my moving in with her last year, I think, threw her into a more advanced stage of Alzheimer's, because she didn't start her night wandering and sitting up at night until then. How will going into a nursing home (even if it is such a wonderful one as my sister-in-law says) with a lot of strange people affect her. It scares me so to think of what it might do to her.
Tuesday, December 12, 1995
We were up last night at 11:30 p.m. until around 1:30 a.m. this morning. My mother was upset with me when I was helping her with using the bathroom. She went back to bed for just a minute, but when I covered her up, she threw off the covers, saying she wished I wouldn't put them on her (It's below freezing tonight). She got out of bed and I helped her get her robe and house shoes one, though she laughed at me as I did and said she was "already dressed for church." Then she went to sit in her chair until 1:30.
We had a good day yesterday. My mother seemed to enjoy my reading to her. And last night she enjoyed the movie we were watching and held hands with me as we watched it. Just like many times before, and how this makes me wish so much we hadn't made the decision to put her in a nursing home.
Wednesday, December 13, 1995
We were up at about 11:30 p.m. last night to sit up the rest of the night. We had been up earlier at 8:30 p.m., with my mother seeming to be in pain and clutching her throat. I thought it was really bad indigestion and gave her something for it, and it must have helped. When she got up at 11:30, she used the bathroom, but we had the usual potty problem then. At about 3:00 this morning, she got up and I went to the bathroom with her, but she didn't go once she got there--acted like she didn't know what to do or why she was there. Again, we went at 4:30, and she sat down, but she couldn't use it, and got angry with me. She looked like she felt awful, and she's terribly swelled again. I thought that lying down in bed might help her, but when I asked her she said "NO!" That's ok--there's not many more of these nights, and I have a feeling that once I get some rest, I will miss even these nights of sitting up.
Thursday, December 14, 1995
My mother was up every few minutes since 7:00 p.m. last night when she went to bed until 8:00 p.m. when she went to sit in her chair. She wanted to be taken "home". Finally I got her into her robe and house shoes and took her to her chair, and she was all right. Although I was prepared to stay up all night again, I had a nice surprise when an hour later, around 9:00, we went back to bed. Later in the night, after she got up to use the bathroom and then went back to bed, I got hit when putting her house shoes on her. But I was lucky again. After going to the bathroom in the other side of the house, she went back to bed.
Yesterday I cried all through the day and wished so much I had not made the decision to give up on taking care of my mother. She was really sweet all day, and it just hurts so much to let her go.
Friday, December 15, 1995
We were up last night at 8:00 p.m. to sit up until 10:00 p.m. She wanted her "other bed"--her chair, because that bed she was sleeping in made her head hurt--my mother said this as she rubbed the back of her neck. It's no wonder she hurts the way she sleeps in bed. I can't get her to lie straight in bed with her head on her pillow. More and more she's curled over, with her head on the other side of the bed, and her hips up near her pillows. I wonder how they will handle something like this in the nursing home.
I've been thinking about all she won't have in the nursing home--the soft music that I play for her constantly during the daytime, which helps keep her calm. She won't have all the movies she and I watch together. She won't have the outdoors like here, the flowers, the birds, cats, and farm animals to see whenever she decides to walk outside. She won't have me to read to her, which sometimes calms her and sometimes makes her forget whatever she thinks is going wrong.
I wonder if she will let me read to her at all when I visit her in the nursing home. I wonder if our visits will be pleasant, or will she be angry and blaming me if she doesn't like it there.
There's so much to worry about, so much to fear. I don't even mind so much sitting up at night with her lately. I know I wouldn't be able to sleep anyway. I don't think I will sleep until after it's over. I'm wondering if I will be able to sleep then, with all the guilt that will surely haunt me.
Sunday, December 16, 1995
We had one more night of peaceful all-night sleep on Friday night. But we had just the opposite again last night. My mother began trying to get up soon after she went to bed. At 8:30, she came to sit in her chair, and I sat up with her for the rest of the night.
She was really hyper and easily upset all day yesterday. Around 10:30 in the morning, she wanted me to be in the kitchen cooking because she wanted all the people she saw in the room (there was only the two of us, as usual) to be fed. I was opening mail and writing Christmas cards, so I took that to the kitchen to look after lunch, which was already cooking. She followed me and insisted that I quit what I was doing and work only on the cooking. So I hurried it up and had lunch ready by 11:30. She had fallen asleep by then. She woke up by noon and was still upset with me. She hardly ate anything, and she said she didn't want it for herself but for "those men and boys." As we left the table after lunch, she said "They must have gone out to eat."
I'm not doing so well with Christmas this year. I have managed to send out fifteen Christmas cards and to get most of the presents wrapped, but I'm not making dozens and dozens of cookies and candies like last year. I'll make just a few, but not like previous years. I had planned not to even if this nursing home thing wasn't coming up, because holiday preparations do seem to make my mother nervous at times.
Even though it did make her nervous last year, she did get into it and enjoyed it some. When I think back on that, I can see how much her Alzheimer's has progressed in just one year. Last year she enjoyed the Christmas tree, put icing on cookies I had baked, and even gave me money to buy presents for the family. This year she's not able to do any of that.
Friday, December 22, 1995
We've had almost a full week of my mother sleeping all night and being very pleasant, with hardly any trouble most night. We have had just a little "potty trouble" with her not understanding that she needed to use it when she got up. Usually she would go all the way to the bathroom in the other side of the house. I was afraid that would end up in us staying up all night those night, but it didn't. She went right back to bed, every night until last night.
Actually, she slept most of the night last night, too. She was up at 4:00 this morning, confused and worrying, saying something about "him" and "chickens." It seemed whatever I said only made her more agitated, so as usual, I let her sit in her chair, and I watched from the next room.
The way she's been so good lately really makes me regret my decision and wish there were some way to get out of it. I keep thinking back, going back through my journal and reading it, trying to figure out what was so terrible that it made me decide once and for all to quit taking care of her.
Sunday, December 24, 1995
We had another good night Friday night. Last night was my fault, I think, for being too sound asleep when my mother got up. If she is already out the door of the bedroom before I get awake, usually my mother is already too confused and angry because she is cold without her robe, and her naked feet are on the cold floor (no carpet), and she needs to use the bathroom but doesn't know where to find it, or perhaps doesn't realize that is what she needs. I got her robe and house shoes on her, though she hit at me while I was doing it, and she was still very angry with me after sitting in her chair around 11:00 last night. When I asked if she needed anything and did she want something to drink, she just sighed, and continued staring in anger.
Something happened this afternoon that confirmed the need for my mother to be in the nursing home. The Home Health aide discovered a rash between her upper legs and lower abdomen, one like I had been taking care of with a cortisone cream at first, and then cornstarch, at her upper abdomen for many months. I had not realized this other area needed the same kind of care, because of her swelling and the way the skin is in folds there. The rash is pretty bad. The only way I can see it and take care of it is to get her to lie down on her back. With this rash, there's no wonder she's been so upset and agitated, and no wonder she couldn't sleep at night. I'm sure they will be able to take care of this problem correctly in the nursing home. I don't know if I would be able to get her to always let me do it.
There are many good reasons she will be better off. She will have skilled nursing care and continuous medical supervision. Perhaps they will discover why she is swelling so much and why she has so much indigestion. Unlike me, they have the training and skills needed for taking care of someone with Alzheimer's, and maybe it really will be what is best for her after all.
But I'm still scared--so scared about how she will handle it emotionally and for what an extreme emotional upset might do for her physically and mentally. When her environment is suddenly so different, I hope she won't, but I'm still afraid she may suffer permanent damage.
Monday, December 26, 1995
We are up now at 1:00 a.m., and it is appropriate that we are, because in a few hours we will be taking my mother to the nursing home.
My mother was up early yesterday, too, though not for long. She got up for about 45 minutes around 3:00 a.m., and then back up at 5:00 a.m. to stay.
My sister indicated yesterday that she feels the same way I do. She said she wished that we could just forget it all--just forget all about the nursing home and go on keeping our mother. But it's been arranged, paid for, and they've been holding our mother's room for several weeks now, and it's too late.
I wish we could just change our minds now and say it was a mistake and that I would keep her longer. She was so good all through Christmas Eve with everyone coming here for a little drop-in party. I did a lot less cookies and candy this year, and more healthy foods: a fruit tray, veggie tray, cheese and crackers. I still got comments like "You really know how to do a party", and "I thought you said you weren't going to do as much this year." This year having people around didn't seem to make my mother as nervous as it did last year. Once she asked me who was in the kitchen, and I said "William". She even got up and went to my brother, William, and hugged him.
Christmas Day at my sister's house went pretty well, too. My mother did get tired and started sundowning a little in the afternoon, getting really nervous and confused for a while. But I think she enjoyed most of the holiday. She even got excited yesterday morning when I was loading my car with the gifts to take to my sister's, and she was smiling and seemed to be happy most of the day.
The night has been different, though. She has been extremely nervous and confused. She's been sitting in her chair, but hasn't slept much. Just now, at 2:00 a.m., she got up, asking something that sounded like "Did you find it?" and "I am waiting for her." She wandered around a little while, then sat back down in her chair and fell asleep again.
On Christmas Eve, we watched a home video my brother made of us all decorating the Christmas tree last year. The most amazing thing about it, other than the fact that I looked fat last year, was that my mother was walking around by herself through the house, looking out the windows, carrying on conversations, sitting contented watching us while we decorated the tree, and smiling--always smiling. She's been so different this year, except for the surprise when she got up to go see my brother and give him a hug. Now she just sits most of the time, and though she has been smiling some this Christmas, she hasn't smiled this much in a long time.
It's almost 3:00 a.m. now. About twelve hours from now, we will be taking her to the nursing home. I've just been walking through the other side of the house to the kitchen, so I wouldn't disturb her, peeping at her from there, and then walking back through the other side with a Coke to where I am watching from the next room. How will I be able to stand walking through this house after we have put my mother in the nursing home? Every part of it will remind me. How will I stand being here?
Being busy with all the Christmas preparations has helped me through the past few weeks and days. But on Christmas afternoon, when my niece started to leave for her trip back home to Florida, she said she would be thinking of us, and praying for us as we put her Granny in the nursing home, then I felt tears running down my face. One of my nieces had told my sister that I didn't need to go. But I do. I've got to see the nursing home, and I've got to see how my mother reacts. We're still in this together, my sister and me, and we will be through to the end, whatever happens in the nursing home, and however long she is there, until my mother passes through the final stages to the end.
It's 3:30 now. My mother is agitated. I just took her to the bathroom again. I asked if she wanted to go back to bed, thinking it might make her feel better for this day if she did, but she wouldn't. She just kept asking "Is she better?" Nothing I said would satisfy her, so I left her in her chair and said as I always do "I'll be in the next room if you need me", and I came to sit and watch again. My constant watching and sitting up at night will soon be over. How I wish I could be sitting in there with her, talking to her on this last night, but I can't for fear of making her more agitated when she is so confused and not understanding anything I say.
Dear Mama, on this last night together, how I wish I could just tell you how much I love you. I love you so much. What will be happening in the next few hours doesn't mean I don't love you. How I wish it didn't have to happen. How I wish...
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