No “Sleeping-In” Yesterday

Following two consecutive days of not wanting to get up, Kate awoke early yesterday and wanted “to get out’a here.” Except for believing she was in an unfamiliar place, she was in a good mood. For me, one of the good things about her wanting to get away is that it makes it easier and faster to get her up and dressed. We were at Panera before 10:30. She worked on her iPad but focused mainly on her blueberry muffin and wanted another. I told her we would be going to lunch in thirty minutes and asked if she could wait. She was agreeable.

The afternoon was our usual one. She rested a couple of hours. Then I suggested we look at a photo album of pictures taken when our children were pre-school age. We did that for a while before our daughter called. We had a nice conversation and Kate handled it well. After the call, we returned to the photo album, but Kate wanted to rest a little longer.

When I suggested our going to dinner, she didn’t hesitate getting up. That is normal. I don’t recall her ever having trouble getting up after resting in the family room in the afternoon. I wish I could say that about the morning when she is in bed.

She was confused about where she was as well as who I was but wasn’t disturbed. She asked my name and asked if we would be coming back for the night. She also said a few other things that made it clear she thought we were in someone else’s house.

At dinner something came up that made me mention our marriage. Kate was shocked. I was surprised at her reaction because we had been talking so comfortably about our relationship. It wasn’t simply that she was shocked. She couldn’t imagine how it was possible that she could have forgotten something like that. Fortunately, I was able to divert her attention. She was fine after that, but I felt bad. I intend to be more careful about that in the future. I think I have been unconsciously trying to keep that memory alive. Now I am beginning to believe that it may be time to let it go. I’ll just assume that she doesn’t remember and not try to remind her. There are enough incidental reminders when we browse through her photo books and interact with other people.

We had one of those middle-of-the-night incidents at 1:30 this morning. I woke up as Kate sat up on the side of the bed. I got up and went around to her side to help her up. She seemed wide awake and cheerfully greeted me like someone she might have recognized but not known. It wasn’t long before she said, “Who are you?” I told her my name but said nothing of our relationship. She didn’t ask.

I asked if she wanted to go to the bathroom. She didn’t. She asked about “the others.” I told her we were the only ones “here.” She seemed surprised but didn’t question me. I asked again if she would like to use the bathroom. She asked where it was. I told her I would show her. We usually hold hands, but she didn’t want to this time.

When we reached the bathroom, I stepped in and turned around to direct her to the toilet. She showed no interest in coming in. Instead, she was obsessed with what time she should “be there.” I never found out where “there” was, but it was important to her. I told her she didn’t need to be there until “1:00 tomorrow.” She was surprised and asked about today. I told her it was the middle of the night and that she would need her sleep to be ready for tomorrow. She went back to the question “What time do I have to be there?” We went through a repetition my standard answer and her standard question. A couple of times she asked what time she would have to leave, but her emphasis was on what time she had to be there. She couldn’t remember and kept asking.

Finally, she used the toilet. When she was finished, she noticed two pictures on the top of a nearby cabinet. One was a photo of my mom and me. She pointed to my mom and wanted to know who she was. When I told her who she was, she said, “I remember her. She is very nice.” Then she asked about my sister. I don’t have a sister but said she was fine. Then she said my sister was very nice and that she liked her. Before getting back to bed, she commented several other times about my mom and sister and how nice they were.

Once in bed, she was still wide awake for a short time. I tried not to encourage much talking, and she soon drifted off to sleep. She is still sleeping as I finish this entry. On the video cam I just saw her moving a few minutes ago, I will check on her and see if she is ready to get up. That would be nice. I don’t have Rotary today, and the sitter is coming at 1:00 rather than noon. If she gets up soon, we would be able to have lunch together. That would be a good way to start the week.

More on Kate’s Sleep/Rest

On Friday, the day I met with Kate’s doctor, I was once again unable to get her up before the sitter arrived. She was in a good mood. She even said she would like to go to lunch with me, but she would never get up. She said something like, “Just give me a few minutes,” but she still wouldn’t get up. She stayed in bed until I got home at 5:00. Except for a short bathroom break that morning, she had been in bed nineteen hours. She was up less than two hours for us to go out to dinner and return home. She was back in bed at 7:30 and went to sleep rather quickly which is unusual.

She continued to sleep Saturday morning until 11:00 when I tried to get her up. She was resistant, but I coaxed her. I told her I was concerned about her staying in bed so much and that she needed to keep her muscles exercised or she could find herself in a wheelchair. That did the trick. Once she was up, she seemed fine. She was in a good mood, and we had a nice lunch.

When we returned home, she rested over two hours. Then I suggested that we look at one of her photo books. We spent about thirty minutes on that before going to dinner. As she had done the previous night, she got ready for bed right after dinner. I was glad to see that she woke up on her own around 9:00 this morning. She wasn’t sure where she was but wanted to “get out of here.” I told her I would take her. We passed a little over an hour at Panera before leaving for lunch. She has been resting almost two hours since returning home.

She is definitely spending more time resting with breaks for lunch and dinner most days. So far, we have had only two days when I wasn’t able to take her to lunch. There has also been an impact on her use of the iPad. I’ve been keeping a record of her daily average time on the iPad using her screen time for the correct information. For the week ending January 5, she averaged 49 minutes a day. That dropped to 39 the next week. The figures for the succeeding weeks are 25, 26 18, and only 8 minutes a day this past week. That’s a dramatic shift from my estimate of 6-8 hours a day as late as last summer.

We are in a transition phase now, and I will take it a day at a time as I attempt to establish a new routine if that is possible.

Highs and Lows Continue

I look forward to another day that I can call a “Good Day,” but right now it looks like our lives are a mixture of highs and lows. That is the story for yesterday. Kate was awake early and wanted to go to the bathroom. She was unusually unsteady and frightened. She held my hand tightly as we waked to the bathroom. At one point, she thought she was going to fall. After finishing in the bathroom, she went back to bed and wanted me to stay with her.

After an hour, I tried to get her up again, but she was too tired and seemed weak. I told her I wanted to take her to lunch before the sitter arrived, but she still didn’t want to get up. I decided to forego lunch with her and let her rest. I did, however, manage to get her up and dressed before Mary arrived. She was very uneasy about standing up and said, “I don’t feel good.” I asked if she were in pain or wanted to throw up. At first, she said she didn’t. Then she said she wanted to throw up. I brought her a pan. She couldn’t throw up. I think she must have picked up on my suggestion and didn’t know what I meant. We walked slowly from the bedroom into the family room. She seemed afraid and unsteady. She wanted to lie down. I took her to her recliner where she was when Mary arrived.

I met her at the door and explained what was going on. I also told her we had bananas and breakfast bars if Kate wanted something to eat. I also reminded her that I have gift cards for both Panera and Applebee’s should she want a meal. When Mary walked in, Kate seemed perfectly normal. I put the chair in its upright position and left. I thought she might be all right. When I returned, Kate was still sitting in the chair. I don’t think she had been asleep. All she had eaten was a banana.

After Mary left, Kate was eager to “go home.” I told her I would take her and that we could get a pizza on the way. Kate was still unsteady on her feet and almost lost her balance as we walked to the car. Everything seemed fine again at dinner. Again, I thought the problem was over; however, she was still unsteady and frightened when she walked.

Once we were home I decided not to watch the news and turn on YouTube for some music that Kate might enjoy. Kate watched for almost two full hours and enjoyed every minute. It was a great time for both of us. She was enthusiastic and would have watched longer if I hadn’t told her it was time for bed. That may have been the source of the next problem.

As we went through the nightly routine of going to the bathroom, brushing teeth and getting her night clothes on, she became irritated with me. She said, “You don’t know what it is like to have someone tell you what to do all the time.” I apologized. Then she did the same. As I walked her to the bed from the bathroom, she said she was all right and let go of my hand. Then she became unsteady and fell on the bed. No harm was done, but it scared both of us. I was up another thirty minutes before joining her in bed. When I got in, she was glad to see me. We ended on a high note.

That leads me to this morning. Once again, she was up early and wanted to go to the bathroom. She was as unsteady and frightened as she was yesterday. She also mentioned that she didn’t “feel good” but couldn’t identify anything that was wrong. Several times she said, “I don’t know what’s wrong with me. I’m not usually like this.” She asked where she was. I told her we were in Knoxville, and she said, “I knew that. I’m having to learn things that I already know.” I told her I was glad to help her with anything she wanted to know.

I suggested she take a shower. She didn’t protest at all. Her insecurity continued and she held a security bar the entire time while I bathed her. Several times she expressed her appreciation and said she wished she could do things for me.

She wanted to lie down again after drying off. Once she was in the bed, she said, “Sometimes I can do things and sometimes I can’t. That may be a sign that I am getting better.” She asked if I would stay with her. That’s where I’ve been for the past hour. I just asked her about lunch. She indicated that she would like to but not now. It’s still just 11:20. I plan to give another thirty or forty-five minutes before asking again. If it is like yesterday, it could be a long time.

I’m still trying to make sense out of what is happening. By best guess right now is that she may not be “sick.” Instead, it may be changes that are related to her Alzheimer’s. I did a Google search on balance among Alzheimer’s patients and found quite a few references to just what I witnessed yesterday and today. Unless I see clearer signs of an infection of some type, I will take this as another symptom that Kate is experiencing with her Alzheimer’s. She has also had more difficulty getting up from a seated position during the past couple of days. Her mobility problems could easily have as great an impact on our lives as her memory loss.

Late Night and Early Morning Activity

Kate continues to exhibit a variety of unusual behaviors. One involves her sleep. Yesterday, for the third or fourth time in a row, she was awake rather early. That has altered my routine of taking a morning walk and listening to audiobooks. In fact, it started Wednesday night when she awoke at 11:40 and wanted to go to the bathroom. That is a rare event at this time of the night. After using the toilet, she wanted to brush her teeth. Then she decided to wash her face. Those two frequently go together. In the process, she used one hand towel and four washcloths that I took to the laundry room for washing yesterday. It was 12:30 before I got her back to bed.

She was awake again at 5:10 and wanted to know what she should do. I told her it was early and she should go try to sleep a little longer. She asked about “the others.” I told her there was no one else here but the two of us. She asked where we were. I told her we were in our house in Knoxville. We circled through this same conversation three or four times. Then I gave her a 5 mg melatonin. Not long after that, she was asleep.

I got up at 5:50. Just as I was finishing breakfast, she started to get up. I went to her. She was ready to get up for the day. After using to the toilet and brushing her teeth, she started giving herself a sponge bath. I suggested she take a shower. She really didn’t know what to do and made no attempt to resist.

I have been getting her to use the shower wand recently, but getting started is always confusing for her. I ended up getting in the shower with her, fully clothed. (When we redid the bathroom two years ago, we enlarged the shower to easily accommodate a wheel chair. That gives me enough room to help her without getting too wet.) After I thought she had things under control, I started to step out. She wanted me to stay in order to make sure she was doing things the right way. Then she agreed to let me stand outside the shower in case she needed my help.

After the shower, we went through our drying ritual. We worked together to get much of the water off before she steped out of the shower. Then we adjourned to bedroom where I placed another towel over the chair on my side of the bed. She sits on it while I dry her feet and the lower part of her legs. I finish with the hair dryer. She likes this process, and I often joke by saying something like, “We’re glad to have you at Richard’s Spa today.” She is usually very relaxed after I finish and wants to lie down a little while. This was one of those times.

I let her rest for at least an hour and a half. Then I got her up to go with me to a doctor’s appointment. She was sleeping soundly, but I was able to get her up without too much difficulty. She was in a good mood though not excited about going with me to see my doctor.

Knowing that we would eat lunch later than usual, I was concerned that she would get hungry. I put a breakfast bar in the pocket of my sweater before leaving the house, but she never said a word about being hungry. It was 1:45 before we arrived at the restaurant. The place was almost empty when we arrived. As a result, we had more time for socializing with the manager on duty as well as a couple of our regular servers. Kate and I both enjoyed the meal and our conversation.

Kate wanted to rest as soon as we got home and did so for about an hour. Then we spent another forty-five minutes with Charlotte’s Web. She was still a little tired. Several times I asked if she would like me to stop reading, but she wanted me to go on. Finally, I stopped when it was time to get ready for opera night at Casa Bella. Everything was going well.

Sleep and Rest

Until a year ago this past April, Kate’s sleeping pattern had been pretty steady. I’m not at all sure that she sleeps any less today than she did, but the time she gets up often varies. More than half the time I get her up between 10:30 and 11:30 depending on whether we have any special obligations. Sometimes, as she has done in the past couple of weeks, she gets up as early as 8:30 or 9:00. It is not uncommon for her to be awake when I go to wake her. She usually goes to bed between 8:30 and 9:30. I don’t think she is usually asleep until 10:00 or later. She must get about 12-13 hours sleep a night. Eighteen months when she was on Trazadone, she slept about 13-15 hours.

The major difference now is the amount of time she rests without going to sleep. Yesterday, for example, I got her up around 11:00. It took an hour and a half for her to shower and dress before leaving for lunch. We got to lunch just before 1:00 and arrived home at 2:30. I suggested that she and I look through one of her family photo albums, but she wanted to rest which is typical when we get back from lunch. She immediately went to rest on the sofa in the family room. She rested until 5:30 when I suggested we go to dinner. There was a short period, no more than 15-20 minutes, when she appeared to be asleep. Otherwise, she was just relaxing.

I am guessing that the strain of social interaction, looking through photo albums, and working on her iPad wear on her in a way that is hard for me to understand. She doesn’t usually show any special signs of fatigue until after we head home from the restaurant. During lunch, she sometimes tells me she wants to rest as soon as she gets home.

As I have mentioned before, the amount of battery life left on her iPad is a good indicator of the amount of time she uses it. Though it remains her primary self-initiated activity, she clearly doesn’t use it as much as she did. That is a result of her resting more because she hasn’t replaced the iPad with another diversion.

The most significant change brought about by her current pattern of sleep and rest is our getting out to Panera in the morning and to Barnes & Noble in the afternoon. That had played a major role in our social engagement. That makes our lunches and dinners our primary means of social contact. That continues to work well for us.

The mornings are times for me to take care of all the routine household chores and other personal obligations I have. I now wash as often as four times a week. A year ago, washing was just once a week on Saturday morning. I also find that the afternoons are pleasant times for us. When she is resting in the family room, I always take my laptop or iPad and stay in the room with her, and, of course, music is always playing. Since Kate is not asleep, we also engage in intermittent conversation. It makes for a very relaxing afternoon for both of us.

Life is different now, but we still get along “remarkably well.” I certainly expect more challenges like the ones we have faced recently, but I am also optimistic that we will handle them well and be grateful for Happy Moments past, present, and future.

Sleep, Rest, and Our Day

Each night I take Kate’s iPad to the kitchen where I charge it when I get up the next morning. The past two days I have noticed another sign of Kate’s changes. Her battery was already at 80% of its capacity. Over the past week or so I think it was in the 60-70% range. Normally, it would be at 30-40% or lower. That is a striking change and provides a measure of how much less she has used her iPad.

Her sleeping and rest have also been a little different. Yesterday was the second day in a row that she was up early. Both days we got to Panera around 10:00. That gave us time to relax there for an hour or more before lunch. I like being able to do that. It makes a nice daily routine and an easy lowkey way for Kate to begin her day.

Getting up earlier does have a downside. It means she hasn’t gotten as much rest or sleep as she usually does. The result is she spent most of the past two afternoons resting on the sofa in the family room. That’s what she was doing yesterday when I came home at 4:00 to relieve the sitter. In the past, Kate would have been ready to go out when I arrived. This time she wanted to continue resting. A half hour passed, and I asked if she would like for the two of us to look at one of her photo books. She didn’t. At first, I was concerned that she might be a little depressed. I talked with her a few minutes to get a sense of that. She wasn’t depressed. She was simply enjoying relaxing. I let her remain there until 5:30 when I suggested we go to dinner.

When we got home, I gave her a photo book to look at while I watched the news. She never opened it. She said she wanted to rest. I hesitated at first because it was 7:00. I thought she might have trouble going to sleep if she rested a little more, but I decided that it might be good for her to get a better night’s sleep. I suggested we go to the bedroom where she could rest in bed.

At 8:00, I got her night clothes for her and helped her prepare for the night. It was another two hours before I came to bed. I don’t know if she had been asleep at all. I do know she was awake when I got in bed. She was also in a good mood. She seemed very content. I am glad that she is happy, but I also see all her changes as a part of her overall decline and know there is a lot more to come.

A Day of Rest

Yesterday I left Kate with the sitter fully confident that they were headed to lunch. I had waked her moments before Cindy arrived. When she walked in, I said, “Your Monday lunch date has arrived.” Kate greeted her warmly. I left feeling like I had set things up beautifully and that they would have good time at lunch while I was at Rotary. The big surprise came when I arrived home.

Kate and Cindy were seated in the family room. Kate was looking through a TCU magazine. I got the impression that she had just opened it. I asked about lunch, and Cindy said they never got to lunch. Kate told her she wanted to rest. She apparently did so until near the time I got home.

I walked Cindy to her car and told her I was disappointed that Kate had not had lunch and that she had napped so long. I started to encourage her to be more assertive with her next time. Then she said she tried several times to get her up, but Kate preferred to rest. I told her that she did the right thing. I didn’t want her to force her. She suggested that next time I might walk to the car with them and that she might be more responsive to me than to her. I’ll think about that. I do think this particular sitter is a bit timid. I am sure the person she replaced would have gotten her there.

After Cindy left, I figured that Kate would be ready to get out of the house. It didn’t happen. She said she wanted to rest. She proceeded to rest for another hour before we left for dinner. When we returned from our Monday night Mexican meal, she worked puzzles for about an hour. Then we adjourned to our bedroom where she spent another hour looking through the “Big Sister Album.” This was the first time that I have been aware of her spending so much time by herself with the album. I usually look along with her but decided to see how she would do without my help. I was glad to see that she could appreciate what she was seeing; however, she did call on me frequently to identify people and to read some of the text.

I was a bit concerned about her having trouble going to sleep, but we went to bed at the usual time. After all the rest she got yesterday, I expect that she will be ready to start the day a little earlier today. I hope so, but I also sense that her recent erratic habits with sleep and rest are another sign of the decline she is experiencing.

An Early Morning Start Leads to More Sleep

Kate got up at 6:15 this morning. She went to the bathroom. Then she asked what she should do. I told her it was still early and thought she might like to go back to bed. She accepted my suggestion and stayed there until 7:30 when she got up again. I went to the bedroom to see if she needed anything. She wanted to know if she had something to do. She wasn’t specific, but it seemed like she thought she might have an obligation to be someplace. I told her the only thing on her agenda was to have lunch with Cindy. She is the sitter that I have tried to position as a friend who takes her to lunch while I go to Rotary. Of course, she stays longer than it takes for lunch, but Kate doesn’t have a sense of time.

Then Kate asked what she could do “right now.” I told her I could take her to Panera for a muffin. She liked the idea. As we drove up to the restaurant, she said, “We’ve been here before.” We stayed less than an hour before she wanted to go home.

When we got home, we sat down on the sofa in the family room to look at one of her photo books. I chose the “Big Sister” Album. We started with the front cover. I said, “Do you know who they are?” She pointed to the girl and said, “Moi.” Then I asked about the boy. She said, “My brother.” I asked if she knew his name. She said, “What is it?”,

We looked at a photo of her mother and father with Kate nestled in between them. I pointed to her mother and asked if she knew who that was. She hesitated a moment and then said, “My mother.” I asked if she knew her name. She said, “Kate.” I said, “That’s your name. She laughed, and I said, “Your mother’s name is Elizabeth.” Then I pointed to her father and asked who he was. She didn’t know but guessed that he was an uncle.

We didn’t get but a couple of pages before she said she was tired and asked if we could look at the album later. I told her that would be fine, and she lay down on the sofa. She said, “I might not see you for three hours.” I wasn’t surprised. She had gotten up much earlier than usual. She needed the sleep.

A Slow Day Yesterday

Kate has gotten up early on four or five days over the past two weeks. On the days when I felt I needed to wake her, I haven’t had any trouble. That changed yesterday when I tried to get her up for lunch with the sitter. She wanted me to leave her. I could, of course, have let her continue sleeping, but I felt she had slept enough. In addition, she hasn’t been as accepting of Cindy’s getting her up. On two occasions when I have done that, she has remained in bed too long. Once she didn’t get up at all while Cindy was here. The other time she got up so late that she didn’t have lunch until 3:00.

By the time I got her up and dressed yesterday, Cindy had been here over twenty minutes. When I got home, Kate was on the sofa resting. I’m not sure how long she had been there. She continued resting while I put up a few groceries and checked email.

At dinner, she asked if I knew what she was going to do when we got home. I said, “Go to bed?” She said, “That’s right.” I told her I suspected she would get her second wind after dinner. That is what usually happens. As we drove home, she said, “What can I do when we get home?” I told her she might like to work on her puzzles. She liked the idea and did so for almost an hour as I watched the news.

Later when I told her I was going to take a shower. I suggested she come to the bedroom with me. She started to follow me but went to the bathroom for the guest room next to ours. I went to look for her when she didn’t return. I found her in the guest room under the covers with her clothes on and the light off. I suggested she come into our bedroom. She came with me.

I put on a DVD of Les Miserables. She sat down in her chair with her iPad. It wasn’t long before she put the iPad down. She started to put on her night gown. Then she got in bed and lay down. She had been very lethargic all day, but she didn’t go to sleep. She was still awake when I got in bed an hour later.

It was another day when she wasn’t cheerful. She just seemed tired, but it was also a day when she appeared to know me as her husband. As we drove home from dinner, she said something about my being a creature of habit. I said, “You think you know me pretty well.” She said, “I should.” I said, “Do you know my name?” She didn’t, but it didn’t bother her at all. She just wanted me to tell her, and we moved on.

I’m hoping for a more cheerful day today.

Update on Sleep and Mood

It was a year ago that I first noticed a change in Kate’s sleep pattern. Until that time she went to bed early, generally about 8:00. In the morning, she got up between 7:30 and 8:30. Last spring, she started sleeping later. In conversations with her doctor, I took her off Trazadone. That enabled her to stay up a little longer, and she was more awake at lunch than before. In general, she still sleeps later. Recently, however, she has been more erratic in the time she gets up. Most days I wake her. I usually start that process around 10:00 or 10:30. Other times she surprises me by getting up early.

In the past week or so, she has gotten up earlier than usual. She was up before 8:00 Saturday. We arrived at Panera shortly after 8:30. That was two days in a row, and the third time we had been there in the past week. Prior to that it had been months since we had been there that many times in a week. A year ago, we went there almost every day.

What should I expect next? I don’t know. She was up early enough yesterday to get to Panera again, and she was upbeat. She appears quite normal until she asks a question that gives her away or until she encounters a problem on her iPad. For example, she was up before 8:00 this morning and wanted to take a shower. She seemed fine, but she asked where the bathroom was. I showed her. She was cheerful and related to me very naturally. I could have assumed that she knew me. As I helped her into the shower, she said, “What is your name?” I told her and left her in the shower.

When she was finished, she got back in bed. I sat down on the bed beside her. We chatted a minute or two. Then she said, “Who are you?” I said, “Do I look like someone you know?” She said, “I don’t know.” I said, “Well, do you think of me as friendly?” Again she said, “I don’t know.” I said, “The way you are talking to me sounds like you must think I’m friendly.” She hesitated and said, “Yes, I do.” I went on to explain that we are married and that we met at the home of one of her high school friends when we were students at TCU. That was the first moment that she seemed to fully accept that I am her husband. Despite these questions, she spoke with me as naturally as though she knew my name and understood that I am her husband. She did express surprise when I told her we were married, but she never looked confused. Only her words conveyed that. She was never afraid or concerned about not remembering who I am. She has only experienced an anxiety or panic attack a few times in connection with not knowing where she is or who she is. I am grateful for that.

I don’t know how long this will last, but it may not be long until she changes again. Right now, it almost seems like we are living as though she does not have Alzheimer’s. Of course, that is not literally so, but it is a happy time. We’ll enjoy these moments as long as it is possible.