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.

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.

A Sad Moment

Over the past few days, Kate’s memory has seemed even weaker than usual. She often fails to remember her name and the names of her mother, father, and me. When I show her pictures or remind her of things about them, she generally shows a spark of recollection. That is less true recently and especially so today at lunch and afterward.

She has had trouble with her name and mine all day. During lunch, she asked my name, I said, “Richard.” She said, “I can’t call you that.” She struggled with how to explain, and I said, “Because you feel like you are too young to call me by my first name?” She acknowledged that was true. I said, “How about Mr. Richard?” She liked that.

As she often does, she asked the “name of this place.” I told her it didn’t, but it had an address and gave it to her. Then I said, “Some people think of it as Kate and Richard’s house.” She gave me a strange look. It was obvious that she couldn’t understand why it would be called that. I didn’t say anything more.

We were seated at our kitchen table, and a few minutes later, she said, “This is a nice room.” I agreed and told her I thought she would like to see the other rooms. When we finished eating, I took her to the dining room and told her I wanted her to see a few things from her parents’ house. She gave me another strange look and said, “Did I know my parents?” I told her she did. She said, “I don’t remember anything about them.” This was not the first time I had heard her say this. I told her I thought I could help her remember and started giving her the usual tour.

She expressed less interest than usual. She couldn’t get her mind off the fact that she didn’t remember them at all. She asked me where they are. I decided not to say they were gone. Instead, I said, “They’re in Fort Worth.” She said, “Did they like me?” I told her they loved her very much. She said, “If they did, why haven’t they seen me?”

I cut the tour short when she asked if I had any pictures of them. I took her into the family room to look at the “Big Sister” album that her brother had made for her. We didn’t get very far before she said, “I don’t remember any of this.” She was tired and asked if she could rest a while. That’s what she is doing right now. When she wakes up, she won’t remember forgetting her parents. The question is “Will she be fine, or will there be something else that disturbs her? Either one is quite possible.

Another Change Since Sheltering-in-Place

I’ve talked about the negative impact that seems to relate to sheltering-in-place, but some changes are good. Saturday and again this morning, Kate was up early enough for me to fix her breakfast and enjoy being with her while drinking my coffee. I think these were the fourth of fifth times she has had breakfast since our being homebound. Being together for breakfast has never been a part of our marriage. I am an early riser and like to eat soon after I am dressed. Kate sleeps later and hasn’t had a great interest in breakfast, at least not right away.

Although her getting up for breakfast changes my morning routine, I find that it has two benefits. One is that it gives Kate something more nourishing than what she had in the past. Second, it provides us with a pleasant relatively quiet moment to start our day together. In each case, I have played soft music that is relaxing to fit the pace that we both enjoy in the morning. Our conversation matches the pace of the music. That works well for Kate and for me as well.

Is this change caused by our being homebound? I don’t really know. I only know that it corresponds to the time we were asked to shelter-in-place. Prior to that time, we would have gone to Panera for a blueberry muffin. Kate enjoyed the 400-plus-calorie muffin, and we both enjoyed the social contact it provided.

We only leave home for takeout now. That gives us much more time together and has been a bonus. On the other hand, it also leads to Kate’s being bored, so she sleeps or rests much more now. I believe the extra rest she gets plays a direct role in her sometimes waking earlier. It’s not just that she gets more rest. Her rest is intermittent and irregular. She rests a while. Then she sleeps. Then she rests while awake. I am sure that some days she gets more sleep than on other days. I believe she wakes early the mornings after days she has had more sleep the day before.

Whatever the reason, I have enjoyed the change, and it encourages me about the future. For a long time, I felt that we would ultimately transition to a day when we spend more time at home. Covid-19 may be introducing that transition earlier than I had anticipated. It reminds me that change can bring about both positive and negative consequences. This is one I welcome.

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.

Feeling Needy and Expressing Appreciation

Kate’s dependence on me continues to increase. That has been even more evident in the past few days. In particular, I have noticed that in her desire to have me physically near her. I think I mentioned that twice in the past few days she has wanted me to come to bed earlier than I normally would. That happened again two nights ago, and she wanted to hold my hand. I’m the kind of caregiver who wants to do everything I can to make her happy and secure, but often it’s just holding her hand that gives her the comfort she needs.

She is comfortable with our sitter, Mary, but twice this week Kate hasn’t wanted me to leave her. Friday she looked sad and frightened when I told her I was going to run an errand and would be back soon. After returning, another incident occurred while Mary was with still here. I was in the kitchen making phone calls when I heard her say, “Where are you?” She had been resting in the living room with Mary and gotten up to go to the bathroom. When I reached her, she was in the hallway outside our bedroom looking for the bathroom. I didn’t ask, but I am sure she didn’t want to ask Mary where it was.

Once we were in the bathroom she told me I was the only one she knew who would always help her. I told her I was glad to help, and she could call me anytime. Then she said something I found interesting but don’t remember her exact words. She conveyed that there are times when she doesn’t see me but calls for me in her “head.” That got my attention because she almost never tells me anything about what she thinks. I would love to know more.

It was also a time when she seemed rather clear-headed. She used my name and referred to our marriage. She went on to express her appreciation for the way I look after her and said, “You know I could not live without you.” The way she said it was not like a routine statement of appreciation, but something much deeper. It was just one of any number of other things that let me know how aware she is of her situation and our relationship. It is also a powerful motivator for me to provide her with the best care that I can.

Yesterday morning she was not so clear-headed. She didn’t know where she was or who I was. She was concerned though not seriously disturbed. I asked if she were ready to get up. She said, “I don’t know.” I told her there had been other times when she was confused in the morning and that it helped to get up. She asked how she could do it. I told her I could help and gave her instructions. As usual, I held her hand as we walked to the bathroom, and she said, “I don’t know who you are, but I like you.” Five or six years ago, I would have been sad. At this point, I feel encouraged that she still retains her feelings for me. May it always be.

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.

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.

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?

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.