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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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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.

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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.

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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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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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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.

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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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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.