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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.

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What Comes and Goes But Never Disappears?

The other day, I received the following reply to one of my tweets. “It is interesting how some with Alzheimer’s do not know your name or relationship but know who you are and that you are their special person. I have no doubt that Kate knows you are her special person.”

I, too, have no doubt that I am Kate’s “special person.” That is one of many things that I didn’t anticipate nor understand when we started this journey together. I won’t say that I fully understand now, but I do recognize that “knowing” someone is much more complex than I originally thought.

From the beginning, I knew that Kate would forget me, but I didn’t think about it in any detail. It was just something I envisioned as one of the saddest moments I might encounter.

I remember the day I discovered that my mother didn’t “know” me. She and I were talking while my dad was in another room. She had mentioned not having any family. I said, “What about your husband?” and she said, “I don’t have a husband.” I was stunned. I hadn’t noticed anything in her behavior that would suggest she didn’t know him. I asked about her sons. She said, “I don’t have any sons.” That blow was softened by her answer to my previous question, but it still caught me off guard.

More specifically, I was surprised because she almost always related to me so warmly and repeated something of a mantra. “You’re such a nice boy. You always were.” I didn’t understand how this could be. It made me wonder how long she had not known me as her son. How had I missed that?

I understand a little better now. At least, my experience with Kate has made this seem perfectly normal (that is, for someone with dementia). In addition, my learning about the difference between rational and intuitive thought or abilities has been powerful in facilitating my understanding. Knowing my name and relationship requires rational abilities, and she has lost those. Developing a comfort level and feeling heavily dependent on me requires something different, her intuitive abilities. Those abilities allow her to sense whether she likes me, trusts me, and depends on me. It is those abilities that will last a long time. For some PWD, they last forever.

Like many people, I thought forgetting me would just occur one day and that she would never remember me again. I quickly discovered memory for names, places, etc. comes and goes. At first, the loss of rational memory occurs infrequently but gradually increases. During the past few weeks, Kate has had greater difficulty with her memory of many everyday things like fork, napkin, and Dr. Pepper. In the past few days, she has had times when she couldn’t remember anything about her parents. In addition, her memory of my name and relationship has been even harder for her to recall than in the past; however, she is still comfortable with me though curious about who I am.

Something new has occurred in the past few months. It reminds me of something similar to an alter ego. We had a good example yesterday morning. I noticed on the video cam that Kate was about to get up. When I reached her, she seemed wide awake, quite unlike most mornings. She greeted me enthusiastically and was very talkative. I decided to take advantage of that. Instead of proceeding to get her up, I sat down on the bed beside her and talked with her. We had a beautiful 15-20-minute conversation. I was taken aback, however, when twice she mentioned her husband. Both of them were positive references. Until hearing this, I would have sworn she remembered both my name and our relationship.

As I suggested earlier, this is not the first conversation in which this has happened. I expect it will happen again. Perhaps I will be less surprised next time; however, the point I want to make is that she had two separate memories of me. One was the person with whom she was conversing, someone she recognized and with whom she was very comfortable and liked. The other was her husband who was not present but was also someone with whom she had a similar comfort level. The difference was only the distinction in our “official” relationship. He was her husband, and I was her “friend” (?).

I should add that she has often thinks of me as her father. That first happened a couple of years ago. It almost always begins with her asking, “Are you my daddy?” I usually answer with something like, “Would you like that?” or “I’m happy to be your daddy.” Then she smiles and calls me “Daddy.” After that it seems totally forgotten until the next time.

Until I was part of this conversation and several others like it, I never imagined this happening. It is one of many things that can seem strange or impossible, but with dementia almost anything is possible. It certainly adds another layer of complexity to the concept of “knowing” someone. Knowing me comes and goes: nevertheless, in some ways, it never disappears.

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Kate’s Intuitive Abilities Are Still Active

There are many reasons I often say that Kate and I have been fortunate while “Living with Alzheimer’s.” Being able to play to her strengths, her intuitive abilities, accounts for much of that. Although I am familiar with many stories of other people with dementia whose intuitive abilities continue to provide pleasure even to the latest stages of the disease, I’ve always wondered how long Kate’s would last. I still don’t know the answer to that question, but I do know that they remain very active.

Her appreciation for music is as strong as ever, and the breadth of her musical tastes is much greater than before Alzheimer’s. I don’t mean to suggest that she has a critical eye for things. She doesn’t distinguish the quality of the musicians she hears. She just enjoys the music.

She also loves “things of beauty” although she often sees beauty in objects that the rest of us never notice. The one I have mentioned most often is her fascination with the paper doilies that she brings home from one of the restaurants we have visited so frequently in the past. She placed some of them on her dresser, a few on her bed table and several in different places in the family room. She continues to appreciate their beauty even as they get crumpled and soiled.

She also stops to take in other items around the house that intrigue her. This past Saturday, I cleaned out a drawer in my desk in the kitchen. One of the things I pulled out was a large envelope with “First Class Mail” printed in large bold letters on the front and back. This quickly grabbed her attention. She folded the envelope and spent 15-20 minutes running her fingers over the words. When she finished, she returned to the first word and repeated the procedure.

I noticed that she pressed her finger on each word and then lifted it. This is something she also does with the pictures in her photo books. She learned on the iPad that touching an icon would take her to something else. She finds it frustrating when nothing happens after touching photos or, in this case, the words “First Class Mail.”

She asked for my help. I explained that it was designed to mail something to another person. Then I said, “You could write a letter to our daughter, put it in the envelope, and mail it to her. Would you like to do that?” She did and I told her I would write the letter on my computer if she told me what she wanted to say. I wasn’t surprised when she didn’t know what to say and wrote a short letter and read it back to her. She liked what I had written. Then I printed the letter and asked her to sign it “Mom.” I gave up having her sign cards, letters, and other documents a year or two ago but thought it would be nice for her to sign this one to Jesse.

I had difficulty explaining where she should sign. After printing the “M,” she needed instructions on both the “o” and “m.” She was unable to put them as close together as she should. In addition, she added several extra “o’s.” She wanted to send a letter to Jesse and wanted to sign it correctly. She just couldn’t do it. It was just the way a small child of three or four might have done. I was touched and hope that Jesse feels the same way when she receives it.

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The Demise of the iPad?

Over the past year or so, Kate had spent less and less time working jigsaw puzzles on her iPad. Prior to that, she spent 6-8 hours a day working puzzles. It was her only self-initiated activity. I started to record her weekly screen time in order to get a better idea of the changes in her usage. In November and December, she averaged 3-5 hours a week, far below her past usage. It continued that way until mid-January when it dropped to 2-3 hours a week.

Enter sheltering-in-place. April’s weekly figures are 1 hour 49 minutes, 1 hour 59 minutes, 1 hour 35 minutes, and this past week, 38 minutes. In terms of daily averages the figures (in minutes) are 16 , 17, 14 (includes a day that I worked  puzzles for at least 30 minutes one day demonstrating how it is done), and 5.4 for the week ending today.

The figures clearly indicate that her use of the iPad is almost a thing of the past. This change makes it more understandable why I spend more time with her now. She no longer has anything that she can do on her own. She does sometimes look at her photo books while the sitter is here but not for long.

It is also interesting that the most significant drop off occurred since we have been home bound. I might have expected an increase; however, even with the added time I spend with her, she has been less active since the changes Covid-19 has brought with it. The kind of things I do with her are more sedentary like looking at photo books. She tires quickly and wants to rest. I have gotten her out for very brief walks up and down the street, but those are a rarity. I think the decrease in stimulation has affected her ability to work her puzzles. When she works them, I spend a lot more time helping her than in the past. I don’t mean to suggest that sheltering is the only reason for the change. That had started long before any of us had heard of the Coronavirus. I just believe sheltering is another factor affecting her. It adds to my belief that the active lifestyle we maintained for so long paid dividends for us that we couldn’t fully appreciate until now.

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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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A Sad Moment to End our Day

The past few days have made me more aware of something many other caregivers  talk about. People with dementia can change quickly from one moment to the next. I frequently find myself caught off guard by Kate’s behavior. Take last night for example.

After spending most of the time sleeping or resting from Thursday night until getting up for dinner yesterday, she was in bed about 7:15 and asleep shortly after that. I was surprised when two hours later I heard her say, “Help me. Help me, please.” I told her I would. She repeated her pleas for help several times before I could get in bed.

After joining her in bed, I asked how I could help her. Her most common response is to say, “I don’t know.” Instead, she said, “I don’t know anything. Help me.” I told her I could help her and said, “First, do you know who I am?” She said, “What’s your name?” I told her and she repeated it but mispronounced it a couple of times. I coached her, and she got it right. Then I asked if she knew her own name. She didn’t. I said, “Your name is Kate.” She said, “Now let me say it.” She couldn’t remember it. I repeated her name twice. She repeated it successfully. For the next 15-20 minutes we repeatedly went over her name and mine. As soon as we finished one repetition, she wanted to go through it again. I wish I could capture the tone of her voice and how intent she was about trying to remember her name and mine. That is what made it so sad. She wanted to do something she simply could not do. The extent to which she was bothered is another example of her awareness that something is wrong with her. She was only successful a couple of times, and then it immediately followed my repeating the name. It was a powerful example of just how poor her short-term memory is, that is, virtually non-existent.

The only good news coming out of the experience is that she began to tire and wanted to go to sleep, and she as been all right today.

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Follow-up on Kate’s Sleeping

When I posted my previous update concerning Kate’s sleeping, it was 9:30. She was still asleep. I didn’t make any effort to get her up before 11:00. She was awake and pleased to see me. Her response was strange in that she started to cry. I asked if she could tell me why. She couldn’t, but she was able to tell me she was happy. That made me wonder if she had been awake for a while and didn’t know where I was or what to do.

She wasn’t eager to get up, but she did so willingly. She was very unsteady on her feet and very confused. We got a takeout lunch that we brought back to the house. Her confusion continued while we were eating. She couldn’t identify her hamburger patty, the bun, or the fries. She ate a good bit of the bun, but I think she would have left the patty if I hadn’t put pieces on her fork and fed them to her. The surprise to me (a pleasant one) was that she ate hardly any fries.

When we finished, we spent about thirty minutes looking at one of her family photo books. Then I turned on Phantom of the Opera on YouTube. I was doubtful that she would be interested since it wasn’t just a concert of the music but the full stage production. I was right. I turned it off after fifteen minutes.

She was tired and rested on the sofa for an hour before sitting up. She was confused and said, “Where am I?” I told her she was at home. She said she wanted to “get outa here.” I told her I would take her but wanted to show her a couple of things first. I took her into the hallway to see her pictures of her Grandmother, mother, and her father. She didn’t express her usual interest. She kept saying she wanted to go.

I took her by the hand and walked toward the garage where I intended take a short drive in the car and return home. Before getting to the garage, she changed her mind and wanted to stay. We went back to the family room. She said she was hungry. I got her some blueberries and cheese for a snack. She ate them and has been resting for about forty-five minutes. It is 5:15. We have plenty of lasagna left over from last night. I think I’ll serve that instead of bringing something in. We’ll both enjoy it.

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More on Kate and Sleep/Rest

Three months ago Kate wouldn’t get up on a day when the sitter was coming. She was still in bed when I left and also when I arrived home. It was about 4:15 when she finally got up.  There have been at least two other times she has slept until late in the afternoon, once until after 5:00. There have been several other days when she has not wanted to get up but ultimately agreed to do so.

When I tried to get her up yesterday, she was resistant. Pushing her never works, so I decided to let her rest a little more. After several unsuccessful attempts, I decided to encourage her. I told her I wanted to have lunch with her and hoped she would get up. That didn’t work at first, but, with a little coaxing, it did.

It was running close to the time for the sitter’s arrival. I put in an online delivery order from Panera. Kate was quiet but enjoyed her lunch. We were still eating when Mary arrived. When we finished, I took Kate in the family room and showed her several of her photo books she might enjoy. Then I prepared for a conference call.

While I was on the call, Kate went to sleep on the sofa and was still resting when Mary left. I went to the sofa and sat beside her. She continued to rest. I told her it was pizza night and asked if she would like to go with me to pick it up. I didn’t get a response. I decided to let her rest a few more minutes.

In fifteen minutes, I tried again without success. She responded the same way she has done when sleeping in the bed in the morning. She was good-natured and said, “I’ll get up in a few minutes.” The problem is that she never does.

I decided to cook lasagna. No, I didn’t make it. I bought it earlier in the week at a takeout place that has usually has two or three frozen dishes they prepare for times like these. Before eating, I asked if she would like to join me. She didn’t, so I went ahead. I fixed a salad (spinach and arugula with blueberries, tomatoes, and slivered almonds) to go with the lasagna. It was an unusually good meal.

After eating, I told Kate is was time to get ready for bed. She didn’t want to move and asked if she could sleep right there on the sofa. I told her that she needed to get to the bathroom and put on her night clothes and then it would be easier to get in bed. I was surprised when she agreed. She was in bed shortly after 7:30 and quickly went to sleep. She was asleep when I got in bed and slept through the night. I expected her to get up early this morning, but she didn’t make a sound when I got up. She is still sleeping at 9:15.

So, what’s going on? As so often happens, I don’t know. I know that it was a year ago that her sleep pattern began to change. Over that time, it has been less predictable than it was before that time. She has clearly been more tired than she used to be. During the past three months that has increased, especially in the past 3-4 weeks. She is not on her feet much before she wants to rest. That often occurs when I give her a tour of the house. She enjoys herself but gets worn out and wants to sit down. As I have speculated before, this may be a natural process as her body begins to shut down. Her doctor seems to think that might be it. Whatever it is, I suspect the fact that she has resisted any exercise must have exacerbated the problem. The good news is that she has not seemed disturbed or frightened. I am eager to see what happens today.

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Living in Kate’s World of Delusions

Kate has experienced delusions for several years, but they occur more frequently now, especially since we have been homebound. Prior to my experience with Kate, I was prone to think delusions were all bad. I am discovering that is not so. Most of Kate’s are benign. They are harmless, some puzzling, but most quite interesting and reflective of her personal values. A few have been disturbing. These have involved a belief that no one likes her, that she has done something she believes was wrong, or that she has some obligation for which she is not prepared. The most frequent delusions involve projects designed to help those who are underprivileged in some way. Often, they involve programs to educate women in third-world countries but also in the United States.

During the past 36 hours, she has had two separate but related delusions that led to unusual conversations. They were very one-sided with Kate playing the dominant role. In fact, soliloquy might be a better word than conversation. The first occurred Wednesday night when I got out of the shower. She began a conversation that lasted almost a full hour and a half during which I said very little. I played the role of facilitator by simply listening, expressing agreement, or asking questions that would lead her to say more.

The second conversation occurred yesterday morning at breakfast. Yes, I said, “Breakfast.” It was another time she had gotten up early before I had fixed my own breakfast. I took the opportunity for us to eat together, never expecting another lengthy conversation. This one was an hour.

Both of them were interesting and involved a school. In each case, she did not know my name and had not recognized me as her husband. That was true all day Wednesday and a large portion of the day yesterday. It was clear Wednesday night that she was talking to me as though I were a potential candidate to join their program. Unlike other similar delusions, she didn’t say much, if anything, about the students. Her focus was entirely on the underlying values of school for those who worked (volunteered?) there. It was a diverse workplace where everyone respected the talents and personalities of the others.

Like another conversation we had several weeks ago, she responded to me just the way she would have if she had known my name and our relationship. Like the previous one, she repeatedly referred  to her husband and used my name each time. She kept saying, “I wish Richard were here. He could give you a better idea (tell you more, etc.).” While she didn’t say much about the students, it was another example of a program designed to provide education to people who might not otherwise have gotten it.

The length and complexity of her conversation was a striking contrast with most of her delusions. She talked non-stop, though in a relaxed style, for a full hour and a half that night. Several times I suggested that we continue the conversation the next morning. She agreed the last time when I mentioned wanting to think about it and talk in the morning.

I never imagined that she would start a similar conversation the next morning, but that’s what happened as we sat down for breakfast. I was never sure that it was an extension of the previous night’s conversation, but it was strangely similar in length and complexity. She also periodically mentioned her husband (me) by name. This time it wasn’t clear if I was a candidate for a position. It sounded more like I was someone who had expressed an interest in what she was doing.

Conversations like these are rooted in delusions brought about by Alzheimer’s; however, they also involve powerful expressions of Kate’s feelings and values. I find that comforting. It reminds me that the real Kate is still here.

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Awareness of Vocabulary Loss

On many occasions I have mentioned Kate’s awareness that something is wrong with her. That is most evident when she is disturbed over not being able to recognize her surroundings or know who she is. I have also mentioned that her vocabulary is shrinking. Many everyday words are rapidly disappearing.

Until this past Monday, I hadn’t noticed any sign that she recognizes the latter change. We were in the bathroom brushing her teeth when I used a word that she didn’t understand. I don’t recall what it was, but it was something ordinary. I didn’t think much about until she said, “I like the way you talk.” I told her I thought I talked the way she does. She told me that I know more words than she does. She said it matter of factly without any sadness or great concern. I feel good about that, but it was a reminder of how much self-awareness she retains. She has far more insight about herself and others than I give her credit for. That awareness may well account for those moments when she seems depressed but can’t explain what’s wrong.