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Childlike and Tired

On Monday Kate and I had very little contact until 4:30. I got her up at almost 11:30. She was more than a bit confused but didn’t express the kind of fear she sometimes does. Recently, she has been unsteady after sitting up on the side of the bed or the sofa. The day before, she had fallen back on the bed before attempting to stand up. This time I asked her to sit for a moment. I put my hand on her back to support her. Then I helped her up. She got along all right but was very insecure as we walked to the bathroom.

She experienced one of a number of childlike behaviors when we went to the car before getting a takeout lunch from Panera. She noticed a Dr. Pepper baseball cap that she had long ago hung on the knob of a cabinet door in the garage. Periodically, she takes interest in it. This time she was just like a little child discovering something new and exciting. She thought it was a nice decorative touch (my words, not hers) and said she might hang a number of them around the garage.

After lunch, she was ready to rest. That worked out well because I had a Zoom meeting at 2:00, and she fell asleep on the sofa. She must have been quite tired because she didn’t take off her shoes nor lift her feet to the sofa. She just fell over on a pillow from a sitting position and slept until at least 4:30 when I noticed she had opened her eyes. I got up from my chair and walked over to her and asked if she was about ready to get up. She told me not to talk, that she wanted to talk with me later. She looked like she was bothered by something. I said, “I love you.” She said, “That may be the right thing to say but not right now.” I started to ask her to explain, but she cut me off. I took her hand and told her I would be seated across from her if she needed me. When I started to release my hand, she gripped it tightly. I sat down on the corner of the table in front of the sofa. It wasn’t long before it felt too uncomfortable. I started to gently pull my hand away, and she held it tighter. In five or ten minutes, she was asleep. I took a seat close to the sofa and waited another fifteen minutes before waking her for dinner.

Whatever was bothering her faded from her memory like so many other things. It’s another good example of the pattern of her delusions. She may be resting, but her brain is active and doesn’t function the way it did before Alzheimer’s took over. As I have said before, she had experiences like this before sheltering. I believe, however, that the reduction in her activity has exacerbated the problem. I should add that it is not boredom alone that leads her to rest. She is really tired.

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Simple Pleasures

I’ve learned that predicting what Kate will be like from one day to the next is far from easy. That is not to say she has bad days. If any day has been a bad one, it would be one of the days she has slept/rested until late in the day. I would call those bad because they were so far from her happy times.

I was hoping that Saturday might be another day like Friday. I got my wish. She woke up in a good mood. Everything was fine. Unlike the day before, she was up before 8:00. That meant another time I was able to fix her breakfast and sit with her while I drank my coffee. Despite the fact that it interrupts my normal routine, I enjoy this time with her.

Both days, she was unusually childlike. Saturday morning, she asked permission or approval of just about everything she did. It started with the bathroom. That isn’t unusual. It is normal. A couple of weeks ago as she was about to sit on the toilet, she said, “You’ll have to tell me what to do. This is the first time I have ever done this.” Her seeking permission continued throughout breakfast and the balance of the day. She preceded almost every sip of juice and every bite of her fruit and cheese toast by asking if it was all right to do so. Although I have considered the possibility that she is worried about getting my approval, I think it is more likely that she does this because she is uncertain of what to do. She expresses that in many ways almost every day, but it was especially noticeable that day.

After breakfast, she rested a while and then spent some time looking through one of her photo books before lunch. She was very interested. I was glad to see that because she hasn’t been as enthusiastic recently. Like the day before, it was a day of simple pleasures. We interspersed moments with photo books with periods of rest. It was a very pleasant day.

That changed a bit after her last rest in the afternoon. I got out the “Big Sister” album and began by pointing out the cover photo of her and her brother. I immediately met resistance when she made it clear that she and her brother were not in the picture. She didn’t know who they were, but she was confident they were some other children. I flipped through a number of other pages, and she responded the same way about pictures of her mother and father. She wasn’t interested in going further.

The rest of the day went well. As I got into bed that night, I got a reminder of the difference between her rational and intuitive knowledge of me. She is almost always awake and glad to see me when I get in bed. That was especially so that night. She had a beautiful smile on her face. Then she asked, “What is your name?”

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A Very Good Day With One Strange Thing

It’s always good to be able to report the especially good days that Kate and I continue to have. That never means they don’t include sad, troublesome, or strange experiences mixed with all the good. The contrast between the good and not-so-good has never been more striking than the past two days.

I consider a day to be good when Kate seems especially happy all or most of the day. Friday, she began the day cheerfully and showed no obvious indication that she was disturbed over any confusion she may have had. She didn’t ask where she was or who I was. I didn’t go in to check on her until just before noon although the sitter was to arrive at 1:00. She was awake and got up easily. We were eating lunch when Mary arrived.

The transition from our being together and then handing her off to Mary has gotten smoother over time. It has been even better since we have been sheltering. I think that is a direct result of my not leaving immediately when she arrives and the fact that I am still around much of the time she is here.

About forty-five minutes before Mary was to leave, I overheard Kate get up from her rest and begin a conversation. Then I heard her ask about the bathroom. Because we still try to maintain physical distancing while the sitter is here, I walked into the room and asked if she wanted to go to the bathroom. Kate was pleased to see me. I feel sure she had forgotten I was still in the house.

When we walked back into the family room, Kate greeted Mary warmly and said, “Who are you?” I said, “This is your friend, Mary. She stays with you when I am not here.” I added that I still had a few things I wanted to take care of in the other room and left the two of them together. They engaged in an easy-going conversation.

I ended up letting Mary go about twenty minutes early. When I did, Kate thanked Mary for being here and went on to say a number of good things about her. After Mary was gone, Kate told me she really liked her.

The day had gone well, so I was surprised when we had a strange experience after she had gotten in bed. I had turned on some YouTube videos of Andrea Bocelli. She relaxed for a short time and then said she needed my help. I went to her bedside, and she showed me her hand and said, “See that?” I didn’t see anything but told her I did. She wanted me to pull back the covers and proceeded to take off her night gown. Then she gave me careful instructions about running my hands over her forehead, around her neck, over and under her arms and down to her feet. She was very serious about this as though something harmful was on her body. When I finished, she was fine.

It was almost two hours before I went to bed. She was still awake. I don’t know whether she waits for me to come to bed or she has rested so much during the day that she isn’t sleepy. I think it’s the latter, but she is always glad when I join her. It’s a good way to end the day and is typical even on days that haven’t gone as well as this one did.

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A Change in In-Home Care

Until sheltering came into our lives, we have had the same schedule for in-home care for the past two and a half years. One sitter comes at noon every Monday and stays until 4:00. That allows me to make my regular Rotary meeting, go to the Y, run errands and attend occasional meetings for the balance of the time. Another sitter comes on Wednesday and Friday between 1:00 and 5:00.

I have always preferred the 1:00 time for both sitters, but that wouldn’t allow me to make Rotary. Our club suspended its meetings in April, and I took advantage of the change to request that the Monday sitter come at 1:00 until the resumption of our Rotary meetings. I thought that had worked fine, but last week the Monday sitter showed up at noon just as Kate and I were getting ready to leave to pick up a takeout meal from Panera. It turned out that she had thought that we had made the change only for the month of April.

In our conversation, I discovered that she has other commitments after 4:00 and had only been staying until 5:00 to help me out for a short time. As it turned out, I haven’t felt the need for her during this time. I continued the service for two reasons. First, she has been with us over a year, and I didn’t want to risk losing her if I temporarily discontinued the service. Second, I didn’t want her to sacrifice the income in case she couldn’t find something else until we started again. When I finally understood the situation, I told the agency not to send anyone on Monday until Rotary begins its regular meeting schedule.

So, for the month of May, I only have a sitter two days a week. Ironically, I feel good about this arrangement. While sheltering, I have only run sporadic trips to the grocery or pharmacy and taken a short walk around the neighborhood. I’ve spent the bulk of the time at home. As a result, I haven’t worried about getting Kate up as early as I had been. Quite a few times, we have been eating our lunch when the sitter arrived. She would take a seat in the family room until we finished eating. After that, Kate usually rests for the balance of the afternoon, and I have worked on other things and made phone calls without any interruptions. I think Kate has been comfortable with the arrangement as well. This means there is never any abrupt time when I am leaving for an extended period of time. I generally say something like, “I’m going to run to the grocery and will be right back.” That is something she has been able to accept without any problem. Thus, I have felt more relaxed during our sheltering.

The question now is what is going to happen when Rotary begins. As it stands, the agency will return the same sitter when I tell her it’s time to change back to the noon to 4:00 schedule. That assumes that the sitter has not been assigned to someone else. I am wondering about the possibility of changing sitters even if the same one is available. I have never felt as comfortable with her as I do with the other sitter. On the other hand, Kate doesn’t require a lot of attention. She rests most, and sometimes all, of the time the sitters are here. Like most changes of this nature, I can’t be sure that the replacement would be better, perhaps not as good. Of course, I could try another one or several, but that would mean introducing Kate to more than one new person. I am leaning toward accepting the same sitter if she is still available, but I have almost two weeks before I have to make a final decision. We’ll see what happens.

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Kate Was Up Early Again This Morning

Kate called me at 7:15 this morning just as I was about to begin my walk. She was wide awake. I commented on that and asked if she would like me to fix her some breakfast. She nodded, and I proceeded to get her up and finish her “morninglies” (with thanks to Tom Robinson for introducing me to this term) before heading to the kitchen.

Mornings are her most likely times to be confused. I use that term when she seems bothered by not knowing where she is, who she is, who I am, or what to do. I think insecure was a better word to describe how she was this morning.  As she got out of the bed, she said, “Help me; I don’t know what to do.” . She repeated variations of this multiple times before we left the bedroom.

It is not unusual for her to ask, “What do I do?” when we enter the bathroom. Another time recently, she said, “You’ll have to tell me what to do because I’ve never done this before.” Today, I had to do more than explain. She seemed worried that she would fall as she sat on the toilet. I had to put my arms around her and let her weight rest on them. I supported her until she was seated.

She enjoyed her breakfast of apple juice, a small bowl of blueberries, and two slices of cheese toast. She finished more quickly than usual, and we went to the family room where I thought we might read something. I wasn’t surprised when she looked tired, and I asked if she would like to rest. She said, “May I?” (That is something she says frequently. She also asks if she can take off her shoes. She is very respectful, at least 99% of the time. It is more like I am the “person in charge” rather than her husband. Of course, I am both, so I understand. She generally thinks of me as older than she is. She commented on that yesterday, and I asked how old she was. She said she was eighteen.)

She started resting at 8:40. It is now 10:20, and she is sound asleep. Fifteen minutes ago, she opened her eyes and said something I didn’t understand. This is a day for the sitter. I should have plenty of time for us to have lunch before she arrives at 1:00. I plan to make a quick trip to the grocery and then return home for a walk. The balance of the afternoon I plan to remain at home and work on my computer.

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Kate and Breakfast

I’ve lost count of the number of times Kate has had breakfast since we have been sheltered, but it happened again yesterday morning and was especially surprising because of how early she got up.

I got up around 6:30 and went to the bathroom. When I left to get dressed, I noticed that Kate wasn’t in the bed. I called to her and asked where she was. I heard her say, “I’m in here.” She was in the kitchen. As best I could determine, she had been looking for the bathroom. That’s where I took her. She was confused but not disturbed in the way I might have expected.

After finishing in the bathroom, she seemed unusually wide awake. I asked if she wanted to go back to bed or get dressed and eat breakfast. She said, “I don’t know.” I suggested she go ahead and get ready for the day. I think I was motivated by the fact that the past two days, I thought she was going to stay in bed most of the day. Fortunately, I was able to coax her to get up both days. The surprising thing the second day was how quickly her mood changed when she finally decided to get up. At first, she seemed rather resistant. Then I said something (don’t remember what) that got her attention, and she was ready to get up.

She was far more willing to follow my suggestion yesterday. As it turned out, this was a morning when we really did eat breakfast together. The other mornings, I had finished my breakfast and just enjoyed my coffee while she ate. When she finished, I took her into the family room where she wanted to rest. That worked for me because it gave me time to take my morning walk.

The next surprise was her wanting to go home after resting. It was over an hour before I planned to have lunch, so I thought that might make for a restful outing, and off we went. We were back home in just over thirty minutes, and she wanted to rest again. I welcomed that because I purchased a new computer, and that gave me time to setup a few remaining things on it.

This morning I had finished breakfast and my walk. A short time later as I was preparing to upload this post, I heard her say, “Hey, what do I do?” I went to her and found she was wide awake. I got her up and dressed and fixed her breakfast again. When she finished, I suggested we go to the family room. I mentioned Anne Frank’s Diary and asked if she would be interested in my reading some of it to her. It has been a long time since we had done this, so I started at the beginning. We didn’t get too far before she was tired although she seemed interested in the book. She has been resting about thirty minutes and appears to be asleep.

I always try to figure out what causes changes like the increased frequency of getting up so early. I am often left with only speculation. That seems to be the case this time. I do know, however, that it coincides with sheltering. That has affected her sleeping and resting. Some days she rests more than others. One possibility is that she wakes up earlier following a day when she has had more than enough sleep; however, she is ready to rest not too long after getting up. Of course, that is true no matter what time she gets up. One exception was this past Friday when she was awake the entire time the sitter was here. Saturday and Sunday she didn’t get up until around noon when I waked her, and she wasn’t eager to get up then.

There is another explanation that may be related to her sleep pattern. It seems to me that she drifts in and out of sleep more frequently than in the past. That has also been true during the night in the past week or so. I’ll continue to observe as carefully as I can. It will be interesting to see what, if any, other changes occur when (if?) we start to eat out for lunch and dinner again.

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Alzheimer’s Took Kate On a Wild Ride Yesterday.

It’s been a couple of years since Kate started to forget my name, but I have taken satisfaction that, with rare exceptions, she always recognizes me as someone familiar that she likes and trusts. Yesterday morning didn’t appear to begin that way, but it was soon clear she didn’t know who I was and was very suspicious of me. Perhaps, “suspicious” is the wrong word. She didn’t say much, but the look on her face was a little more like anger. Unlike other occasions, I had a difficult time putting her at ease.

Once again, she awoke earlier than usual. When I walked into the bedroom, she was wide awake and greeted me enthusiastically. Her greeting, however, was a little more like I was a good friend she hadn’t seen in a long time. We chatted a few minutes. Then I brought her bear to her. We talked a little more before I asked if she wanted to get up. She said she wanted to rest a little while longer. I told her it was early, and that would be fine. I asked if she would like me to bring my laptop to the bedroom and sit in my chair beside the bed. She did.

An hour later, she woke up. This time she didn’t express any enthusiasm. She didn’t know anything and was scared. I told her I knew a lot about her and her family and would be glad to answer any questions she might have. She didn’t know what to ask or what to do. I suggested that she get up, and I would fix her breakfast. She liked the idea of getting breakfast but not getting up. I spoke to her very calmly and encouraged her to get up, but that didn’t work. Finally, I said, “You’ve felt this way before, and you seemed to feel better once you were up and dressed.” She was skeptical but agreed to try it. She got out of bed, and we walked to the bathroom. I thought she was all right.

She didn’t say much in the bathroom except to ask my name several times and was not as warm and friendly as she can be. Getting dressed was a simple matter. She enjoyed her breakfast but was rather quiet. We had another hour and a half before lunch, so I suggested we read The Velveteen Rabbit. She wasn’t eager but consented. Before I started, she wanted to rest. I thought about her bear and wondered if that might lift her spirits. She acted like she had never seen it and didn’t care about it.

I let her rest until it was time for me to order lunch. I had no trouble getting her up, but her mood had not changed. On the way to pick up lunch, I turned on some music that she likes. When she heard “Shall We Dance” from The King and I, I noticed the first flicker of a change. On the way home, I played more.

When we returned home, I played the same album and didn’t talk much. Neither did she. She enjoyed the music. During one of the songs, she reached her hand out to me. I took it. She put her other hand over mine, and we sang together. She was back to normal.

It wasn’t long before the sitter arrived. As I have been doing during this period of sheltering, I took a walk. It took me a few minutes to get ready. During that time, I noticed that Kate was talking with Mary. It was at least ten minutes before I left, and they were still talking. I make a point of this because their conversations are usually brief and periodic. Kate rests most of the time the sitter is here. I was encouraged by Kate’s mood and that the two of them were engaged in such natural conversation.

I was only gone about forty-five minutes and was pleased to see that Kate was not resting. She had one of her family photo books in her hand. Mary was seated in a chair across from her. I didn’t go in the room to let Kate know I was home. I am sure Mary heard me come in. I checked email and then had two lengthy conversations with friends.

After the second call, I heard Kate talking enthusiastically about the things she was looking at. Several times she asked when I was coming back because she wanted to ask me some questions. I decided say hello. She was excited to see me, but she was mostly excited about the photo book with its pictures and the accompanying information.

She was particularly interested in my remembering everything so that she could use it in her own album. It always intrigues me that even when I tell her this is her book, and she has all the information, she never understands that it is hers and is available to her anytime. I suspect this occurs because she believes she is in the home of a relative and not her own home.

At any rate, she was unusually animated. She and Mary talked the entire time she was here. I walked Mary to the door when she left, and she told me that she had taken Kate to the bathroom while I was gone and changed her. That was the first time that has happened in the two and a half years Mary has been with us. This was a good indication of how good she felt about Mary. Kate even commented to me about how much she liked her.

Not long after Mary left, we went to pick up our takeout dinner. I had given Kate her bear (Charlotte), and she wanted to take it along with her in the car. On the way home, she mentioned sharing her meal with Charlotte. I wasn’t sure how far she was going with this. I thought Charlotte could get pretty messy. As it turned out, she did get a little food on her but not much. I propped her up on the table beside Kate and got a small plate for her food. Kate put a little food on the plate and also tried to put some in her mouth. She loved attending to Charlotte.

Kate’s mood changed after getting dressed for bed. She didn’t know where we were and was worried about people who were either in the house or who might be coming over. She seemed frightened. I assured her we were the only ones in the house and that no one was coming. She wasn’t convinced and repeatedly asked me where we were and why. This went on for at least thirty minutes before she seemed to relax.

When I joined her later, she greeted me warmly as though she had been that way all day. I was glad to end the day on a high note.

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Kate’s New Friend

Quite sometime ago, a Rotary friend whose wife has Alzheimer’s, asked me if Kate enjoyed stuffed animals. He said his wife loves them, and he had given her a collection of them over the course of her disease. I told him Kate had never had a particular interest in them but enjoys children as well as cats and small dogs. I don’t think I mentioned the ceramic cat in our family room. She’s always been fond of him and for years kept him snuggled around the toilet in the bath off our laundry room. I moved him to the family room a couple of years ago. She sees him more often now and almost always stops to greet him in the morning.

More recently, I’ve thought of getting her a stuffed animal, but it was one of those things I never got around to doing. That changed a week ago but not because I finally took action. A colleague at the office brought us dinner last week and along with that a stuffed bear for Kate. He (she?) was an instant hit. Since he entered the picture at a time when her memory is weak, she doesn’t usually ask for him. There has been one exception. I don’t recall the exact circumstances, but she had been holding him a few minutes before and went to our bedroom. She said, “Where is he?” I said, “Who?” She answered, “My little friend.”

Her interests change a lot from day to day and, sometimes, from moment to moment. I wondered how long her fascination would last. Today marks a full week since the bear became a part of the family, and her interest has not diminished. She loves holding him in her arms and often talks to him. There are a variety of situations in which she has been holding him but then does something else that makes that difficult.

One of those times is eating dinner. Each night I take the bear from her and rest him against a pillow on the window seat next to the table. I chose that because Kate has been taken with the pillow she thinks is a person. Since placing the bear, she hasn’t “seen” the person.

Anytime she has been holding the bear, and it is time to get a takeout meal, she wants to take the bear with us. He has even made a couple of trips to the bathroom with her.

We haven’t settled on the bear’s gender but may be coming close. The other day Kate said she thinks it’s a girl, but she slips back and forth between referring to “her” as “he” or “she.” We’ve talked about a name, but that, too, is unsettled. Two days ago, I did a search on girl’s names and read quite a few to her. The only name Kate liked was Charlotte. I like it as well, but I keep thinking it is a better name for a spider. (Sorry about that. I couldn’t resist.)

So far, Charlotte has been a friend to hold while Kate is seated or resting, but I’m also exploring its therapeutic benefit. Yesterday, for example, she was confused when she awoke. I brought Charlotte to her and used her a little bit like a puppet to see if I could relieve any of her anxiety. I discovered there is a spot at the back of the bear’s neck that, when pressed, causes her head to nod. Similarly, squeezing her around her waist causes her arms to move up and down. It didn’t take but a moment for Kate to take Charlotte in her arms. She felt better.

I’m not surprised that the bear has been so well-received. Kate is definitely more childlike now. I suspect we may find that Charlotte provides increasing comfort in the days ahead. Everyone needs a friend.

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Going Home

In my last post about Kate’s wanting to go home, I suggested we might be heading for a new routine of taking a ride in the car after every meal. That has become a pattern since then. It happens almost every night when we finish dinner. It has also happened a couple of times after lunch. It has become so routine that she doesn’t ask to go home. She just says, “I’m ready to go now.” She does sometimes say she wants to go home at other times during the day, but I have been distracting her attention to something else. That works most of the time.

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Update on Kate’s iPad Usage

For the first time, Kate’s screen time was zero for the week ending Sunday, May 3. This doesn’t necessarily mean she will never use it again, but it looks like we are at the end of a long and beneficial ride.