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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.

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Alzheimer’s Continually Presents Surprises

As I’ve said many times, change is a big part of our lives now. Sometimes the changes seem to come out of nowhere and, thus, are more surprising than others. Yesterday afternoon, Kate experienced two changes in her mood and behavior that caught me off guard. The first one demanded a lot of my attention. I welcomed the second.

Our day had been a very good one. She was up at 7:30. She was confused, but it was a time when she was ready to do whatever I suggested. I told her I thought it might be good to get up and have breakfast. I had already finished mine but enjoyed having my coffee while she ate.

After breakfast we adjourned to the family room where I thought she would immediately decide to rest, but she didn’t. Instead, she was interested in looking at a photo book. It wasn’t long before she was tired and rested until time for an early lunch.

She rested again as soon as we finished lunch. She didn’t sleep much, and the last hour she tried to read a booklet that her mother’s Sunday school class had given her for her birthday in 1989. It was filled with things the class had heard her say many times during the years she had taught. I asked several times if I could read some of it to her. She finally accepted, and we both enjoyed ourselves.

Then it was time for dinner. I placed an order at a nearby Mediterranean restaurant. On the way, Kate asked for her lipstick. I was surprised. It had been months since she asked about lipstick, and I stopped carrying it. (I suspected that she must have thought we were going to see someone, but she didn’t say anything that would confirm this until much later.) As it turned out, this was the beginning of the first significant change in her mood and behavior. I explained that we could get it when we got home. I never thought she would remember it. This was another time I was wrong. As we were eating, she asked for it.

I went to the bedroom and brought it back to her. I started to open it myself, but she wanted to do it. She extended the lipstick too far, and it broke off. She grabbed it with her hands and put it on her lips. In the process she made quite a mess on her hands and her cloth napkin. I got something to wipe her hands, but it wasn’t easy to remove all of it.

As we continued eating, she asked about the location of her salmon and her cucumber salad on her plate. I hadn’t thought much about it, but she had pushed them around after I served her. I told her it was fine. I added that she could put them wherever she wanted.

It got more serious later. She had finished eating and was now applying her aesthetic tastes to the arrangement of her leftover food. That would have been fine, but she wanted my help. I said something that was a playful response to her request. That was the wrong thing to do. This was a serious matter for her. She had pushed all the remaining food together toward the center of the plate. She was concerned about a couple of blank spaces where there was no food. I picked up a couple of pieces of cucumber and filled in one of the gaps, but she wasn’t satisfied. She started moving grains of rice and pieces of tomato to balance the “food art” she was creating. She picked up several things and put them on her placemat. During this process that took about twenty minutes, she mentioned that “she would like it better over here (referring to portions of the food). She wanted to know what I thought. I said, “It looks good to me.”

Then she extended her art beyond the bounds of her plate. She crumpled a piece of a paper towel and put it on the placemat and pushed it toward the center of the table. She also picked up the two coasters and made them part of the art. Subsequently, she added two catalogs, a coloring book, and crayons. At some point, she said something about wanting it to look right for “them.” In this case, she was talking about people who were coming to the house. Finally, she stopped, but she wanted me to put the plate with the food in safe place. I put it in the refrigerator.

Then we went to the bedroom where I helped her get ready for bed. She has been getting in bed around 7:15 or 7:30 recently. This time she got into her night clothes but wasn’t ready for bed. She wanted to know what she should do. I asked if she would like to look at one of her photo books. She did, and I brought her the “Big Sister” album. I knew she would have problems with it, but I figured she would probably give up and go to bed. Wrong again. This came at a time when I wanted to clean up a few things in the family room and kitchen before taking my shower. She was insistent on my helping her. She seemed to be under pressure for something.

She asked what she should do. I explained that she should go through the book looking at the pictures. I told her she would see a lot of pictures of herself, her brother, and her mother and father. This didn’t help her. I pointed to a picture and told her some of the things I noticed about it and told her that was the kind of thing she could do. I was surprised when she seemed to get the idea. She started her own narrative with a photo. Then she said, “It’s your turn.”

I told her there were a few things I needed to take care of and would also be taking a shower. I said I would come back to her. That’s when she said something about our preparing for someone to arrive and that we were going to put on a show for them with the photo book. She would tell her story with one photo. Then I would tell my story with another and so forth. I helped a little longer before telling her to continue while I took my shower.

I was sure she would become frustrated and give up on the album by the time I returned. That was when I got the second surprise. She had changed completely. She had gone through the entire book and was on the last page or two. This was a surprise because she doesn’t usually spend that much time when she is looking at it by herself. She was her happy normal self. Apparently, she had forgotten about the guests who were coming and no longer had to worry about being prepared for them. Whatever the reason, it was nice to end the day with her in a good mood.

I should add that I had not previously observed anything that would make me think she was “sundowning;” however, her behavior was different enough from other situations that I thought about that. In the future, I will be more attentive to this possibility.