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Caregiving and Rational Thought/Abilities

Two years ago, I read The Dementia Handbook by Judy Cornish. That book has had a significant impact on the way I look at dementia and the ways in which Kate and I have approached the topic. The key piece of learning was the distinction between rational and intuitive thought processes (or abilities). PWD lose their rational thought/abilities, that is, their ability to remember things like people, places, facts, and events as well as the procedures or steps to accomplish the activities of daily living.

Most people are aware of these symptoms, at least in a general way. That often leads to the conclusion that there is no hope for PWD. Cornish stresses that the loss of these abilities does not mean the end of happiness or even joy. Her view is based on the fact that PWD retain their abilities to experience the world directly through their senses and that much pleasure and satisfaction with life comes to all of us this way.

This fits rather nicely with an admonition that is often given to caregivers of people with dementia. “You have to live in their world. They can’t live in yours.” This and Cornish’s work on rational and intuitive thought goes a long way in explaining why Kate and I have gotten along so well. That is largely because I enjoy many of the things that appeal to her through her intuitive thought. It is also because I derive so much pleasure from her own enjoyment.

I have made much of the importance of Kate’s intuitive abilities in this blog. That and my belief that I should “live in her world” leads me to suspect that some of you may think I believe rational abilities are of secondary importance to those that are intuitive. Experiences like those in my previous post probably reinforce that belief. For that reason, I would like to comment on the role of the rational ones for a caregiver.

My view is that caregiving, as well as everything else we do, is better when we rely on both our rational and intuitive skills. My emphasis on the intuitive ones is based on the fact that Kate and I are able to derive so much daily pleasure from them; however, even those things are influenced by my use of rational abilities.

I’ve read a number of books and articles by and for caregivers. Many of them are memoirs of their experiences while caring for someone with dementia. Others are “advice books.” The very nature of the latter taps into the rational abilities of caregivers. The level of detail varies, but they all attempt to provide other caregivers with a set of guidelines to help them avoid or minimize the problems they are likely to encounter. They are often lessons that the authors had to learn the hard way. They include advice like I mentioned above. “Live in their world.”  “Maintain a daily routine.” “Don’t contradict.” Some identify activities they have found helpful like music, art, trips to museums or zoos, coloring books, etc.

The value of rational abilities goes well beyond those designed to deal with specific issues experienced by PWD. They involve making sure that all legal and financial issues are in order, scheduling routine and not-so-routine health and medical appointments, deciding if and when it is right to bring in help and what type is best for one’s particular situation, deciding whether to keep a loved one at home or rely on a facility like assisted living or memory care.

The list of such things is endless. During any given day, caregivers must make decisions that depend on their rational abilities. They are especially important because PWDs have lost their own abilities to do those things.

Because Kate and I have experienced joy while “Living with Alzheimer’s,” I’ve been interested in the memoirs of caregivers who have had similar experiences. In each case, the caregivers have been very active in planning and managing the daily routines of their loved ones. Caregiving is not an easy task. Success requires both rational and intuitive abilities.

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An Especially Good Morning Yesterday

I can’t ignore the fact that caring for Kate has become more challenging. On the other hand, there are real high points intertwined with the challenges. That has definitely been true the last couple of days.

On the whole, Kate has been more insecure. Some of that arises from her physical instability. She almost always wants to hold my hand when she walks. It happens every time she sits down. It also occurs when she is emotionally disturbed. It is hard for her to explain it to me, but she  experiences anxiety attacks.

This has happened twice in the past three or four nights. She didn’t know anything at all and was quite disturbed. They both occurred at least an hour after she had gone to bed. She couldn’t tell me much, but she was frightened. Fortunately, it didn’t take too long for her to calm down. All she needed was for me to lie down with her and comfort her.

We had a particularly good morning yesterday. Except for being unsteady on her feet, she seemed fine when she got up. Getting her ready for the day went smoothly, and she was ready to go. I told her I could fix her some cheese toast, and we went to the kitchen. I had finished my breakfast a short time before but fixed myself some coffee and sat down with her for what may be the fourth or fifth time in the past few weeks. I don’t know what has prompted her getting up so much earlier. It may be getting more sleep during the time she rests.

After breakfast, she wanted to know what she could do. I suggested we go to the family room and look at one of her photo books. We were only a page or two into one of them when I could see that she was tired and asked if she would like to rest. She took me up on that and rested about an hour and then sat up. I took a seat beside her and opened the book we had begun before she rested. For some reason, she didn’t respond with much interest. It’s hard to find something that works all the time.

Then I thought about reading something to her. I picked up The Velveteen Rabbit from the table in front of us. It had been quite a while since we last read it. I had gotten the impression that my reading to her had lost its allure. Anyway, I decided to try it again. Of course, she didn’t remember it. I was pleased that the impact of hearing it again was like the first time I read it to her several months ago. She expressed her emotions audibly throughout the book. When we approached the end, we were both a bit teary. I joked with her that we were quite a sight, two people approaching 80 being moved by a children’s book.

Kate’s rational thought and abilities are so weak that I find it interesting that she is able to enjoy the book so much. I am almost certain she is unable to process the story line. Her own emotional response must relate to the emotional content that is central to the story. I also suspect that is what has made the book a popular one for such a long time.

If that Happy Moment had been the highlight, I would have called it a good day, but there was more. When we finished, Kate said something about her parents. That made me think about showing her some of the things we have from her parents’ home. She was eager to see them. I began by showing her a salt-glazed pitcher on a counter behind us. On the bottom is a typed note from her mother explaining that her father bought that for his mother and after her death it became hers. She noted that it was for Kate and that Kate could pass it along to our daughter, Jesse. Kate was very touched as I read it to her.

From there, I took her on our usual tour through the living and dining rooms. She was especially moved by the things I showed her. Interestingly, I am getting more nostalgic myself. All of these things have also been a part of my life. I suppose that is a function of aging, but I believe it is more than that. I think that the narrative I present to Kate is actually rekindling my own memories in a way that the items themselves hadn’t done in the past. One thing I do know is that we spent a good portion of our morning simply enjoying ourselves via our intuitive abilities. Moments like these continue to uplift us even as the challenges increase.

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Going Home: A New Ritual?

Since Kate’s diagnosis, I’ve read many other caregivers’ accounts of their experiences “Living with Alzheimer’s.” At the most general level, I have learned at least two things. The most important to me is that there is much diversity in the circumstances of all caregivers and the loved ones for whom they care. That should be no surprise. After all, people without dementia are not all the same. Why should we find it different among those with dementia?

On the other hand, I have also found there are quite a few symptoms that are very common. One of those is the desire “to go home.” It is not only something that individual caregivers describe, but it spawns a variety of explanations for why it occurs among PWD. This is one of the ways in which Kate’s Alzheimer’s is quite like those others with her diagnosis.

I don’t recall exactly when this began, but it is something that is clearly more frequent now than in the past. This habit has led me to ask two questions. Why does she want to go home? and what should I do about it? Here are my answers.

Why does she want to go home? To me, this is an easy question. Her memory has declined so much that she no longer recognizes home. She doesn’t recognize any of the rooms in the house. She has to ask for my help each time she goes to the bathroom. Sometimes this doesn’t trouble her. That is especially true when she stops to admire things like the flowers inside and out as well as the shrubs and trees outside. The pleasure of that experience tends to divert her attention from being in a unfamiliar place.

The times when she is most likely bothered by not knowing where she is occurs when she wakes in the morning or from a nap. I believe her wanting to go home comes from a desire to be in a place she knows and is more comfortable. Since we have been sheltering in place she has also wanted to go home when we finish a meal. I think we’ve eaten out for so long that she thinks going home is the natural thing to do after eating.

So, how do I deal with it? When this first started happening, I did what I think most caregivers do. I reminded her that we were at home. As natural as that may be for a caregiver to believe appropriate, it doesn’t generally work for Kate. From what I have heard form other caregivers, it doesn’t work for them either. It had a momentary impact on Kate, but she would immediately forget and ask again.

That’s when I learned to tell her that I would be glad to take her home. This was before Covid-19. I would take her to Panera and get her something to eat and drink or just drink if it was close to a mealtime. This worked well until sheltering in place. Now I drive her around for 10-20 minutes and then return home. That has not failed yet. I say “yet” because she made me think she was onto me after dinner the other evening. About five minutes after leaving the house, she looked at me and said sternly, “Now, don’t try to trick me.” I said, “I won’t do that.” That is all that was said. We arrived home 15-20 minutes later, and she was happy. I don’t know what she was thinking about when she warned me not to trick her. I don’t really believe it was an awareness of what I was doing, but it sounded that way. Maybe I was just feeling guilty.

Anyway, I have found a way that through the time of this post has worked every time. That is not to say it will work in the future. If that happens, I’ll have to think of something else. I really hope I continue to be successful. It doesn’t require any elaborate plans and can be done rather quickly and effectively. What more could I want?

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Kate is Like a Child.

I suppose everyone has experienced and been delighted by the innocence of children. As a youth and during most of my adult life, I didn’t give much attention to children except for our own and those of family and friends. As I aged, I developed a greater appreciation of the gifts they bring us. They haven’t developed the sensitivity adults have about “proper” behavior. They behave and speak as if it only matters to them and no one else. They express what they feel so naturally.

Kate has always been interested in children. The nineteen years she served as our church’s volunteer librarian were especially fulfilling for her. Much of her work involved children either directly or indirectly. She would have kept her responsibilities as librarian had it not been for her Alzheimer’s. She realized before her diagnosis that she was no longer able to fulfill her position the way she thought she should and resigned.

During the past nine years, her interest in children has become a fascination for her. She enjoys watching them wherever we go and often speaks to them and compliments the parents for having such beautiful children. That has further increased my own appreciation of them.

That leads me to think about Kate. For the past three or four years, she has been somewhat more childlike herself. Increasingly, she behaves with me much like a child with her parent. That is expressed in several different ways.

The most typical example is her wanting to show me little things she has done. She seems proud of herself for what she is doing and wants my recognition. She likes me to watch as she pulls strands of her hair and runs her fingers between each of her toes to get “them” out. She asks me to look at her as she picks her teeth with her fingernails thinking there is something is stuck between them. She is sensitive about her skin and daily runs her fingers across the skin of her arms and legs and shows me her hand and says, “See them.” I try to pay attention and reinforce her belief that she is doing something good.

Above all, her most childlike qualities involve her expressions of enthusiasm for things she enjoys. Her pleasure over the beauty of flowers, trees, shrubs and house plants is the best example. The arrival of spring has brought daily moments of pleasure. She loves to share her enthusiasm with me and sometimes says, “Look at the pink (green, yellow.) “Do you see it?” I translate her question as “Won’t you share this beautifuI moment with me.” I never tire of seeing how excited she is almost every time she walks in our family room. That is particularly true when she sees the two small pots of African Violets. She also takes time to admire the four Poinsettias that have survived the winter. Occasionally, she sees the hydrangeas at the far end of the room and walks over to get a closer look. If she turns around after admiring them, she sometimes is surprised to see the Poinsettias again. I don’t ever recall seeing any sign that she is aware of having previously seen them or any of the other plants prior to that moment.

The newest source of pleasure involves her food. This has only occurred since being homebound. It seems surprising because the meals I prepare are very simple and most of our takeout meals aren’t the same caliber of those we have eaten at the restaurants. She rarely leaves anything on her plate. The exception would be the skin of apples and tomatoes as well as the crust of her bread.

She always wants to share her pleasure with me. It never dawns on her that her entrée and mine are almost always the same. Even when I tell her, she often says, “Try it. You’ll like it.” and passes her fork with a sample for me to taste.

It’s not just that she likes the food. She is animated and talks about it during a large portion of our meal. She liked her meals when we were eating out, but it was usually a special dessert that she talked about most. I never thought she was at all inhibited in a restaurant, but, perhaps, she feels even freer to talk when it is just the two of us at home.

Another possibility is that it is simply a side effect of her Alzheimer’s. She has forgotten most of the foods we eat. For a while, that was limited to a few things like pizza and pepperoni. Dr. Pepper has always been her favorite drink, and she wouldn’t drink the diet version. Now I only buy diet. It doesn’t make any difference even when she is looking at the bottle from which it was poured. She has also almost forgotten the name Dr. Pepper except to recognize it when I offer it to her. She raves about how good it is with almost every sip and then asks, “What is this?” We go through this multiple times during a meal. I suspect that is happening with all the other items on the table. As far as she knows, what she eats and drinks is always new and always good.

Some of you may be thinking, “How sad that she no longer recognizes the names of her favorite things.” You would be right. It is sad. It can be especially painful for me as her husband. How I wish I could spare her from these things as well as those that are to follow. My only way of adapting is to recognize that it is totally out of my control. All I can do is try to keep her safe and happy. I pour all of my energy into that. I’ve learned to live in her world and to be joyful that she can still enjoy life. I am also aided by the fact that she is so dependent on me. She is like a young child, she can do very little on her own. She needs help with everything, and I am willing and able to give it.

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Does Kate Still “Know” Me?

It’s been almost two years since Kate first asked my name. I mentioned it to a friend in Rotary who has been very active in our club’s support of a project to raise funds for Alzheimer’s research (CART, Coins for Alzheimer’s Research and Treatment). A week later he made an announcement encouraging club members to contribute and mentioned what I had said. He conveyed how devastating that must have been for me.

While I would not have used that word, it was a moment that took me aback even though I knew that it would come eventually. I also knew that this was just forgetting my name in one moment and that at other times she would recall. I took it as a sign that the day might be coming when she would completely forget who I am and wondered how long that would be. At this point, I still don’t know. That’s good news because it means she continues to remember off and on both my name and that I am her husband. In fact, in the past few months, she has called me by name more than she did a year ago.

There is even more good news. Although it is common for her not to remember my name and relationship, she almost always recognizes me as someone who is familiar and with whom she feels comfortable. She trusts me. Two incidents occurred yesterday that are good illustrations.

At 8:30 yesterday morning, twelve minutes into my walk, Kate sat up in bed. I went to her. She was ready to get up. Although she expressed her general unfamiliarity with the location of the bathroom and what to do when there, she did not appear to be disturbed at all. I took her hand and walked her to the bathroom.

For months, she has asked what to do when I show her the toilet. Recently, I started telling her to pull her underwear down and sit on the toilet, and everything would come naturally. Once seated she understands I was right and sometimes, as she did yesterday, seems amazed that “the water just comes out.”

After using the toilet, she asked, “What next?” I told her it would be a good time for a shower. She didn’t hesitate and just asked where and what to do. I turned on the shower and led her inside. She was very comfortable with me and preferred that I take the lead in bathing. The was the first time she just stood there and turned around when I asked so that I could reach all around her.

As we walked out of the shower, I said something I don’t often say, “Do you know who I am?” She said, “No, who are you?” I gave her my name, and we continued to the bedroom where I helped her dress. Then she lay down to rest. I believe that during the time from getting up until that moment she didn’t know my name or our relationship, but she obviously trusted me. Of course, that could have been because I was the only one available. I believe, however, that her comfort level expressed the nature of our relationship and that she would not have responded the same way with a stranger.

The second illustration occurred late yesterday afternoon and early evening. Following her afternoon rest, she sat up and said she was ready to eat. I told her it was a little early for dinner and suggested she have a snack to tide her over until then. We went into the kitchen where I gave her a banana. She didn’t remember what a banana is but was delighted when she took the first bite.

It was clear that she also didn’t remember we were in our house, so I decided to give her a tour of the dining and living rooms. We must have spent ten minutes in the dining room. I am embellishing my commentary even more now. I pointed to the chandelier (never remembers what a chandelier is) and explained that was from her parents’ home. I said, “Can you picture your mother and daddy looking at different fixtures and finally deciding this was the one they believed was best for their new home then under construction. Her mother was quite a cook and loved to entertain. I reminded Kate of all the celebratory occasions and specific family members that would have eaten under the light of that chandelier. She loved the tour, but all the family items I showed her never made her recognize she was in her own home.

When we entered the living room, she was tired of standing and asked if she could sit down. We sat on the sofa that had been in her parents’ living room. I reminded her of the times we had sat on that sofa and sneaked a kiss or two after her mother and daddy had gone to bed. I didn’t yesterday but sometimes I also remind her of the doorbell that her parents had installed for her grandmother who stayed with them in the winter. Her mother rang the doorbell as a signal when it was time for me to leave.

Kate was tired and asked if she could rest on the sofa. I told her that would be fine and that I would get my laptop and sit with her. She rested about forty-five minutes before asking when we were going to eat. I told her we could order takeout from Chalupas right then.

As she got up, she asked me where I live. I said, “Right here with you. This is our house.” She looked at me skeptically. I didn’t say anything more. Her conversation in the car going to and returning from the restaurant made it very clear that she didn’t know my name or our relationship. I responded to one of her comments by saying, “I hope you feel you can trust me.” She said, “I do. You’re a nice guy.” I said, “I’m glad to hear that because I like being with you.” She said, “I like being with you.”

We ate our meal and then went to the bedroom where she started to work on puzzles but became frustrated with the first one. I gave her a couple of photo books to look at while I watched some of the evening news. She wasn’t interested. I asked if she would like to get ready for bed. She was. She was very cooperative in taking her medicine and putting on her night clothes. She went to sleep but woke at least for a minute or two when I got in bed an hour and a half later. She responded to me warmly just as though she knew I was her husband. Did she? I don’t know. I do know that she tapped me on the arm early this morning. I looked at my watch. It was 4:44. She said, “I love you.” I said, “I love you too.”

Does it really matter whether she knows my name or that I am her husband? She knows “me.”

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This Morning’s Surprise

I was asleep but felt Kate move. When I looked, she was seated on the edge of the bed. The clock read 4:52. I asked if she wanted to go to the bathroom and that I would help her. She said she didn’t. She stood up. I walked around to her and asked where she was going. She didn’t answer. I reached out my hand and said I would help her. She signaled with her hand to go in front of her. Still thinking she might want the bathroom, I turned in that direction. She wanted to leave the bedroom.

She led me down the hall way to the other bedrooms. She walked through each one and looked in the closets as well as things on dressers and tables. Two of the rooms have an adjoining bath. She went from the hallway into the first one, through the bath and into the next bedroom. She turned left into the hallway. When she came to the door of the door of the first bedroom, she entered it again. She went back through the bathroom into the second bedroom. Then she went into the family room and on to the kitchen turning lights on in each room.

When we stopped in the kitchen, I told her I wanted to help her. She started to whimper and said, “I wish you could.” I asked if she could tell me what the problem was. She couldn’t.

As we left the kitchen, I took her hand and led her to our bedroom. I stopped at her side of the bed. She sat down, and I suggested that we get back in bed. She was hesitant but got in and leaned against the backboard but not in a straight sitting position. She was still bothered by something.

I got in bed and had an idea. First, I put on an album of beautiful music by Joshua Bell.  I decided to try diverting her by getting her to help me. I told her I was a little keyed up and needed her help to relax. I moved close beside her, and she gently stroked by arm. Neither of us talked. She began to relax. It was almost an hour later when she began to fall asleep. I was about to get up when she asked if I could sit beside her and talk to her. Then she said, “You don’t even need to talk, just sit here with me.” I sat on the bed beside her for fifteen minutes. We didn’t say much though we did express our love for each other. She was very calm and relaxed. Finally, I told her I was thinking of getting dressed and asked if that would be all right. She said that was fine and sounded like she really meant it.

At 8:45, I had just finished my breakfast and was about to take my morning walk when I noticed that she had gotten out of bed again. I went to her and found her in a good humor, but it didn’t appear that she knew where she was. I told her I wanted to show her something. We went to the hallway where I showed her the picture of her mother. We didn’t linger as long as we usually do.

She wanted to move on. This time she walked to another bedroom. I can’t remember why, but I left her a moment. When I came back, she was in the closet. We use this one primarily for storage of games, photo albums, and miscellaneous stuff that we should probably gotten rid of long ago. I asked what she was doing. She said she was cleaning up. Most of what she had picked up to trash was just that, but some were things we might want to keep. I helped her sort them out.

I suggested we go back to our bedroom and get her dressed. She agreed. After she was dressed, she asked if she could lie down again. I told her that would be all right. That was about an hour and forty-five minutes ago. I think that’s good. That enabled me to take my walk and write this post. It is now approaching time for lunch. If she isn’t awake in the next thirty minutes, I’ll wake her. I’m optimistic that she will be fine, but I am used to surprises.

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Adapting to Changes in Kate’s Sleep Pattern

I’ve alluded many times to my OCD tendencies and my adaptability with respect to Kate’s Alzheimer’s. For the most part, I am pretty flexible and don’t experience any anxiety when things can’t go the way I planned. The hardest thing has always been my commitment to be on time. Kate’s Alzheimer’s presents a problem for me. I try to allow plenty of time to have her ready for all appointments and other obligations. This would include those that are self-imposed like having lunch together before the sitter arrives. I had a schedule that was working, but Kate’s recent changes in her sleep/rest pattern have upset things a bit.

Ironically, I’ve experienced more anxiety on the days we have a sitter than on the days we don’t. That doesn’t seem like the way it should be. It really shouldn’t, but the problem for me is two things. I feel a need to have Kate ready when the sitter arrives. It also involves the plans I have made for myself during that time. On Monday, my Rotary club meets at 12:30. The sitter arrives at noon. That works fine unless I’ve had trouble getting Kate up and dressed. This is self-imposed because I wasn’t sure how comfortable Kate would be having the sitter get her out of bed, help her with toileting, and dressing her. I am less sensitive to that now, but I still like for her to up and dressed when I leave.

On the other two days, I generally have more flexibility. The sitter arrives at 1:00. That gives us an additional hour to get ready and eat lunch. In addition, I rarely have any appointments as early as 1:30. That allows me a little extra time. It is not unusual for me to stay as long as fifteen minutes after the sitter arrives. Now that we are homebound, I have spent as much as two of the four hours at home. I could easily get along without a sitter now, but I don’t want to run the risk of losing them should I temporarily discontinue their service.

Several times recently Kate hasn’t gotten up until late in the afternoon. The first day I made a concerted effort to get her up. I didn’t push her too hard but far enough that I got a hostile reaction. I backed away. Since then, I have let her stay in bed as long as she wanted, but it bothered me.

Friday was another one of those days. I took a very non-threatening way of waking her. About thirty minutes before trying to wake her, I turned on music that I hoped might gently wake her. Then I took my laptop into the bedroom and worked on a blog post. I waited for her to open her eyes and see that I was there and then casually spoke to her in a way that she wouldn’t take as the first step to get her out of bed. I was very relaxed. We talked a little, but I didn’t try to get her up. She seemed in a good humor but sleepy. When I finally asked if she would like to have lunch with me, she wanted me to go ahead. I told her I would really like to eat with her but said nothing more. She didn’t move. I told her I would be in the kitchen if she needed me.

This time I believe I really accepted this as part of the natural progression of her Alzheimer’s and not a time for her to change. I’m the one who needs to do that. Having done it, I feel much better. To my surprise, I think the overall adjustments we are making in connection with being homebound have made this change easier than it might have been. It’s been a time when I have fewer obligations even those that are self-imposed. Except when I prepare a meal, our lives are more relaxed.

Since Rotary is not meeting, I have changed the time for our Monday sitter to 1:00 from noon. That and the fact that I don’t have to rush away when she arrives creates a greater feeling of relaxation. Like everyone, I am accepting a lot of things that were not my first choice. Given everything that is happening, fretting over her sleeping seems less important than it was before.

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Life is Different for Us Now, and It’s More Than Covid-19

It is Thursday, three days since my previous post. Some of my readers have let me know they wonder if something is wrong when I miss a day or two. I usually say that I have been busy and that we haven’t experienced any significant problems. That answer doesn’t fit this time.

I have been busy, but a good bit of that has involved problem-solving with Kate. She hasn’t been her normal self. It seems to be an escalation of the problems surrounding her sleeping late. It’s not just the sleeping that is the problem. She has been more confused. She frequently thinks she is not in her own house. Now, however, it seems that she typically believes she is somewhere else. I don’t believe there was a time yesterday when she realized she was at home.

It’s not just home that she doesn’t recognize. She is also having more trouble recognizing me as her husband. It’s ironic that she is simultaneously remembering my name more than she has in a long time. That provides me with a certain amount of comfort although she frequently asks, “Where is my husband?” or says, “I wish Frank were here.” That was especially true yesterday. Before I tell you about that, I need to follow up on our very busy day Sunday. It will be easy to summarize.

You will recall that she was up early on Sunday and very active. She wasn’t agitated, but she was awake all but a very brief time during the entire day. She slept well that night and was wiped out the next day. I made an effort to get her up for lunch before the sitter came. That was a lost cause. I decided to let her sleep/rest as long she wanted. I finally got her up for dinner at 5:45.

She didn’t want to come to the table. I set up a card table and folding chairs in the bedroom, and we ate our dinner. She was still tired after dinner and wanted to go to bed. She slept well. When she woke up on Tuesday, she was back to normal. We had a good day. That brings us to yesterday.

Kate got up about 6:45. I don’t recall her ever getting up so early in years except for a bathroom break. I was in the kitchen when I looked at the video cam. She was starting to make up the bed. When I went to her, I found that she seemed wide awake. I offered to take her to the bathroom. She didn’t want to go. She also didn’t want to get dressed. She wasn’t irritated with me. She just didn’t want to do these things. She was somewhat like she had been on Sunday. She felt there were things she needed to do.

I had taken my plate of scrambled eggs with me to the bedroom. She saw them and said, “That looks good.”  I told her I could make some for her. She liked the idea, and we went to the kitchen.

Throughout the entire day, she kept “losing” me. In most instances, I was very near her at the time. She just didn’t see or recognize me. This first occurred as I walked ahead of her from the bedroom to the kitchen, she lost me a couple of times and asked where I was. She didn’t seem terribly upset, but she was relieved when she saw me. This continued at the table while I was getting her breakfast of apple juice, strawberries, grapes, and scrambled eggs. She ate every bite. I was pleased because she hasn’t wanted eggs in a long time. I’m glad to have a more nutritious option for blueberry muffins.

It was also a day when she didn’t recognize me as her husband nor that she was in our home. She was especially surprised when I started to load the dishwasher. She acted like I was her guest and said she would do it later.

Several times she said, “Where is your brother?” I told her Birmingham. She said, “Why is he there?” One time she said, “When is he coming?” This surprised me as she hasn’t said anything about my brother in a long time. I can’t imagine what prompted her to remember him.

After breakfast, she was tired and wanted to rest. I suggested she get dressed first and then rest in the family room. She accepted my suggestion and slept almost an hour, much less time that I expected given that she was up so early. Since I had missed my morning walk, I took advantage of the time and took it then (inside the house, of course).

The next surprise was that she started to get up after she was awake. Normally, she would continue to rest and only get up when I suggest that we do something together. I asked her where she was going. She said she didn’t know. That’s when I suggested that I come over to the sofa and look at one of her photo books with her. She agreed.

I picked up a photo book and sat with her. She didn’t know who I was and asked my name. I told her, and she wanted to know our relationship. I told her I was her husband. This was a time when I shouldn’t have been honest. She was bothered by not knowing. I told her I didn’t mean to upset her. She said she wanted me to be honest. She went on to say she was not herself. I told her I recognized that. She wanted to know why she was this way. She said, “It’s not just my memory. I don’t know how to do things.” I said, “That must be scary.” She said, “It is.’

She wasn’t as interested in going through the photos as she usually is. That led me to go in a different direction. I started to give her a tour of the living and dining rooms. We passed by a photo of our twin grandchildren. She enjoyed seeing them. Then I showed her a pitcher with a note from her mother that said it had been a gift from her father to his mother and that she had kept in her living room many years and was to go to Kate who could pass it along to our daughter Jesse. Kate was moved by this. From there we went to the living room. I showed her a cabinet with eighteen porcelain dolls. Her father had given them to her mother for anniversaries, birthdays, and other special occasions. At this point, she got very emotional and indicated this was too much for her. I suggested we eat lunch. I fixed her a grilled ham and cheese sandwich and a salad with chicken for me. She sat at the table while I prepared the meal. Several times, she said, “Where is he?” Each time, I walked to her and said, “I am right here. I wouldn’t leave you.” She was very relieved each time.

After lunch, we went back to the family room to look at photo books again. That’s what we were doing when the sitter arrived. Kate was still confused. I decided not to abruptly  get up and leave. Mary had brought her lunch and ate it in the kitchen while we continued to look at family pictures. When Mary finished, she came back to the family room and took a chair across the room. Finally, I told Kate I thought I would take a walk around the neighborhood and asked if that would be all right. She said that would be fine, and I slipped out.

I was gone forty minutes. I expected to see Kate asleep on the sofa. Instead, she was still looking at her photo book. That is very unusual. She always likes to nap after lunch. In addition, I don’t remember a time when she spent that long looking at photo books by herself. It makes me think that she was trying to find something that would jog her memory.

More importantly, she was more confused than when I left. She looked at me with a flash of recognition but was puzzled. I think she recognized me as someone she knows but not as her husband. I sat down with her and went through the book giving her information about the people she in the book. Several times she asked my name and relationship. I told her, but she didn’t express any great emotion.

I could tell rather quickly that she needed something to divert her and thought of her father’s family movies that had been transferred to DVDs. I mentioned them to her, and she was interested. We went back to the bedroom where I put in one of the DVDs. The part we watched was shot around the mid-to-late 1930s, so the quality of the film is poor. The sound that accompanies them was made by Kate’s father, mother, and two cousins as they watched the films we watched. That helped us identify most of the people. That is especially important for the children we have only known as adults. Kate was immediately taken by what she saw. We watched for an hour before ordering a takeout meal for dinner.

During the film, Kate periodically said, “Where is my husband?” Each time I said, “I am right here.” She experienced immediate relief and then asked the same question again. It was a bit frustrating for both of us, she because she didn’t know where I was and didn’t recognize me as her husband, I because no matter what I said I could give her only momentary comfort.

We went through this same routine at dinner. After we finished, she was tired and ready for bed. She was still awake when I joined her two hours later. She didn’t ask about her husband, but I could tell by the way she responded to me that she didn’t believe I was he.

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From the Mountain Top to the Valley in Less Than Twenty-Four Hours

Wouldn’t you know it, right after our wonderful day Thursday, Kate had a bad day yesterday. I have no explanation except to say she has Alzheimer’s. Changes can occur from one day to another and sometimes from moment to moment. I know the source of the problem is in her brain, but I don’t know what happens that causes the brain to change like that. Here is what happened.

I started to wake Kate around 11:00. Recently, I have felt I may have been more abrupt in waking her, so I took a slower approach. I began by turning on an album of show tunes by Julie Andrews. Then I went in to say good morning without appearing to look like I was in any hurry for her to get up. She smiled. I was encouraged. When I suggested it was time to get up. She said, “In a few more minutes.” That was a clue to what followed. What she said and how she said it was exactly what she has said on other days when she didn’t want to get up.

At 11:30, I remembered that I had scheduled an appointment for haircuts at noon. They are closing all barbershops and hair salons tomorrow, and this was our last shot for a haircut. I explained that to her. Once again, she acted like she understood me and didn’t appear to be obstinate. She just closed her eyes and acted as though she didn’t hear me. I tried to encourage her to get up for fifteen minutes and then gave up. I knew she had dug in her heels.

The sitter was to arrive in another hour, so I decided I would wait for her and then get a takeout meal for myself. When Mary arrived, I explained the situation and took her to the bedroom to let Kate know that she was here. Kate hadn’t had her morning medications, so I got them for her. In the past two weeks, it has become more difficult for her to take her medicine. She puts the pill in her mouth and takes drink of water. She doesn’t, however, swallow the pill. She takes it out of her mouth.

Over the weekend, I placed a grocery order for delivery on Monday. It included apple sauce I had bought just for her medications. Then I discovered that using apple sauce doesn’t necessarily work like a charm. I put apple sauce in a spoon with a capsule on top. She took it in her mouth but didn’t swallow it. That led me to open the capsule and mix the contents in with the apple sauce. That worked. I tried another pill and had the same results I had experienced with the capsule. She swallowed the apple sauce without the pill. We tried again, and it worked. Next time (this morning) I need to crush the pills.

I got my take-out lunch and brought it back to the house. When I finished eating, I decided to take care of a couple of income tax matters. I got caught up in that and spent more time than I expected. I ended up staying at the house all but thirty minutes of the time the sitter was here. That turned out to be productive although I felt funny staying home with the sitter. The only time I left was to drop by the pharmacy for a couple of things.

Kate never stirred while Mary was here. She left at 4:30, and I went to the bedroom to see if Kate was awake. She was. We chatted briefly. She seemed all right, but, unlike yesterday, she wasn’t at all cheerful. When I mentioned that it was approaching the time for us to get a pizza, she seemed interested. When I told her I would help her get up and dressed, she responded as she had in the morning. I tried several times over fifteen minutes. Then I decided to have the Brunswick stew I had bought the day before. I set the table and heated it. I wondered if she would get up when dinner was ready and thought about what I would do if she wouldn’t. Putting up a card table and chairs beside the bed seemed like a good alternative. That turned out to be what I did.

As soon as we finished eating, she wanted to go back to bed. I turned on YouTube videos for two and a half hours. She seemed to enjoy them, but she didn’t express the kind of enthusiasm she often does. Then I wondered if she would be able to go to sleep. That did not seem to be a problem, and she slept through the night. It is now 11:00, and she is still asleep. I am on the computer in the bedroom. She has awakened several times and spoken to me. She seemed all right. The test will be what happens when I try to get her up. I’m going to wait until she wakes up again before I try that.

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Sleeping In Again

For the first time in a couple of weeks, Kate didn’t want to get up on Monday. It was a day for sitter, and I was eager to eat before she came. I planned to order a takeout meal online from Panera. When realized I wasn’t likely to be successful getting her up, I decided on delivery. l thought she might be willing to get up when the food arrived.

She had other thoughts. As in the past, she didn’t seem disturbed or unhappy. She seemed quite relaxed until I started to encourage her to get up. Then I backed off and asked if she could tell me if something was wrong. At first, she couldn’t. Then she said she had a pain but couldn’t tell me where it was. I told her I would get her a Tylenol. When I brought it to her, she refused and got mad at me. I decided to let it go and left her with the sitter.

With all the emphasis on social distancing, I had been a little concerned about having a sitter, but I needed a few things from the grocery store and ran a couple of other errands. Then I went home. I had been gone only an hour and a half, but I let the sitter go. The deal with the agency is that they charge a minimum of four hours even if I return early. For that reason, I didn’t have to worry about the sitter’s losing income.

Kate was still in bed when I walked in. I put up the groceries before trying to get her up again. Getting a fresh start was a good thing. I approached the bed cheerfully and acted the way I would when I first see her each morning. I told her I was glad to see her and asked if she would like to get up. She was like a different person. She got up and dressed without a problem and wasn’t experiencing any pain.

She was like a child as we walked into the family room. She was especially taking with the flowers. The African Violets are blooming, and we still have four poinsettias. Kate loves showing everything to me as though I have never seen them before. I always express the same enthusiasm.

She was the same way eating the ham and Swiss sandwich with a side of grapes. This was the first time in a while that I had ordered anything with ham in it. She had gone through a period of time when she wasn’t eating ham. Her taste in food and beverages shifts a lot. I am now buying Diet Dr. Pepper, something she would never have drunk before. On occasion, I have gotten her Diet Pepsi at Panera. She has never liked Pepsi, but she drinks it now without noticing what it is. In fact, she never knows what drink she is drinking. Sometimes I get her lemonade, sometimes a mixture of lemonade and unsweetened tea. Only occasionally does she ask what she is drinking.

As an aside,  she has a recurring hallucination while sitting at the kitchen table. She looks at the pillows on the window seat across from her and believes she sees a person. Sometimes it is a woman, other times a man. Sometimes she/he disappears. Her vision is poor, so there are many things she sees that are confused with other things.

Since she got up at 3:15, I thought she might not want to go to bed until later. She fooled me and was in bed at 7:30 and went to sleep watching YouTube videos. As it usually does, the day ended on a high note. It was like the had had an ordinary day, and she had only been up four hours. I should add that she slept until 11:00 yesterday, had lunch, and rested again.