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Data on the iPad

Kate’s use of the iPad continues to be a smaller part of her life as she declines. It wasn’t long ago that I mentioned the amount of power left in the battery at the end of the day used to be from 25-50%. Yesterday for the first time, I took a look at her screen time over the past seven days. It was very instructive. Her total time on the iPad was 3 hours and 19 minutes (an average of 28 minutes per day), and almost half of that was on Tuesday, one week ago. She didn’t use it on Saturday or Sunday. As of this morning, her screen time was 2 hours and 10 minutes for the past seven days (an average of 18 minutes per day).

I don’t have the data to prove it, but I know that at one time her screen time must have averaged as much as 6 hours or more per day. That was her major activity. She was on it most of the time she was awake and not eating or involved with some other activity I had planned.

This causes me to reflect on the progression of change that has occurred over the past eight years and ten months since Kate’s diagnosis. At the start, she was actively working on her computer. It was challenging for her, but she was able to check her email and work on a photo book that she is still planning to create. She never got beyond editing photos and did that for many hours every day. She also enjoyed working in the yard. She pretty much filled her day between those two activities. As it became increasing difficult to use her computer, she started working much more in the yard. She could easily spend six to eight hours there. It was her “happy place.”

When I saw that she wasn’t using her computer as much, I introduced her to the iPad. I thought that would be an easy way for her to keep up with her email and Facebook. She never got into that. It was only when I showed her the jigsaw puzzle apps that the iPad became an important source of entertainment.

She continued to spend a lot of time in the yard until about two years ago. She “pulled leaves” until there were almost none left. (That killed almost eighteen shrubs. I gave them a year to come back and had them taken out a year ago.) That is when she was left with the iPad as her only self-initiated activity, and now that is going away.

The consequence is that I am playing a more direct role in keeping her occupied. Her photo books have become more important. At the same time, she is resting more. That helps to balance my load. On the whole, there are other things that also require more attention. I am washing a lot more now. Each of the past three mornings I have had to change the sheets on our bed. That doesn’t demand much of my time. It’s just one more thing.

Having said that, I don’t want people to be overly concerned. I don’t feel overworked or stressed out. Before that happens, I will bring in additional help. We still enjoy being together, perhaps even more now. I know our lives are likely to change significantly – and sooner than I want. Kate can’t think about the future. As a result, she has no idea how little time is left for us. She does recognize her dependence on me and counts on me for everything. I won’t let her down.

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Delusions, Paranoia and Other Things

Yesterday, Kate woke up on her own before 10:00. I took her to the bathroom. After that, she wanted to lie down again but didn’t go to sleep. I got her up and dressed in time to have lunch at noon. Prior to that I didn’t observe anything much different from any other day. She wasn’t especially cheerful, but she wasn’t depressed. As on other mornings, she expressed her greatest enthusiasm for the photo of our daughter, the flowers, the backyard, and the photo of our son.

At lunch, everything was going along well. She asked multiple times about the Frank Sinatra mug shot. Then late in the meal she looked at a large poster of a bottle of Cinzano. She had asked about it only two or three times before. When she asked, I explained that it was a brand of Vermouth and often used in Martinis. That led to explaining a Martini. I told her it was gin with a very small amount of Vermouth, sometime so small that one could hardly tell it was there.

That may have sparked something. She said, “Sometimes somebody could try to slip that in your drink.” We went on with our meal. Our server brought her another Dr. Pepper. Kate took a sip and had a look of suspicion on her face. She said, “I think someone in here is trying to get me. I’m not going to drink it.” I asked if she knew who “they” were. She said, “No. I think they’re working with her (our server), but she doesn’t realize it.” In another minute, she showed me a small piece of tomato that was in her orzo. She said, “See.” I said, “Is that something they planted?” She nodded.

She continued to talk about the need to be careful and that they might get me as well. It wasn’t long before our server asked about dessert and mentioned they had pumpkin cheesecake. I discretely let her know that Kate doesn’t like pumpkin. Then I told her that sometimes “we” eat things that “we” didn’t like in the past and to bring us a piece. When she bought it out, she whispered in my ear that she had added extra whipped cream on top because she knew that Kate likes it. As it turned out the problem wasn’t the pumpkin itself. She took one bite and liked it, but she said “they” had gotten the cheesecake as well as the Dr. Pepper. She took one other bite, but I ate the rest.

I know that paranoia is one of the common symptoms of Alzheimer’s, but this was the first occurrence for Kate. I’ll be interested in whether or not we have a repeat.

The other experience occurred at a local theater. We went to see Into the Woods. We had seen this quite a few years ago on Broadway and were not taken with it; however, I know that it received a lot of awards. That made me think about going. We have a season subscription, so it didn’t cost anything extra. I went prepared to leave at intermission, if necessary.

It turned out that was a good plan. The only thing better would have been to have stayed at home. It was simply too complex for Kate to enjoy. In addition, much of Sondheim’s music is not melodic. She just couldn’t get into it. Throughout the first half she gave me lots of dirty looks as if to say, “You are the one who brought me here. Now get me out.” Several times she gave me an angry look when I applauded.

When intermission came almost ninety minutes later, I said, “Let’s go.” The irony for me is that I thought the musical itself was very creative and well-done. In fact, it was the best cast I have seen at this particular theater, and we have attended off and on for thirty-five years. The quality of the singers was excellent. When I said that to Kate as we walked to the car, she agreed the cast was great. It was interesting that her displeasure did not affect her evaluation of the production itself.

We didn’t talk much on the way home. I decided it was a good time to play music that I know Kate likes. I learned a lesson today. We have always been willing to take a chance on theater productions. Most of the time, we are glad we went. At this stage of Kate’s Alzheimer’s, however, I need to be more careful in what I choose to see.

We relaxed at home for an hour before going to dinner. I played a Barbra Streisand album that she likes while she rested on the sofa. Our son called during that time, and she enjoyed his call. She spoke a little more than usual and gave him a sincere thank you for calling.

After Kevin’s call, we went to dinner and then back home to watch a portion of Fiddler on the Roof. We had watched about an hour the previous night. Last night she just couldn’t get into it and wanted to go to bed.

At 2:00 this morning, I felt Kate move. She was sitting up on her elbows. I asked if she needed to go to the bathroom. She said, “No. Where are they?” I said, “What do you mean?” She said, “My notes. I can’t find them.” At this point, I knew she must have been dreaming. She started feeling around the bed with her hands. She asked me to turn on a light which I did. Then she got out of bed and looked around the room. When she didn’t find them, she looked in the bathroom. Of course, she didn’t find them, but she did bring back two photos she likes. One was our daughter in her wedding gown. The other was a photo of my mother and me on Mother’s Day two years before she died. She put them on her bedside table.

I thought she was going to spend a good bit of time looking around. It was only after telling her several times that I thought she should get back in bed and wait until morning to look any further. All this took about fifteen minutes. When she got back in bed, she couldn’t get the notes off her mind. She kept talking about trying to find them. I promised her I would help her search this morning. We must have been awake another thirty minutes before dozing off. I am counting on her not remembering any of this when she gets up.

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More Signs of Aphasia

Kate’s vocabulary continues to shrink. At lunch on Friday, she picked up her knife and asked, “What is this?” I said, “It’s a knife.” She said, “What’s a knife?” I explained that it was something we use to cut our food. She said, “So it’s a cutter.”

Saturday morning after brushing her teeth, she showed me the toothpaste and said, “What’s this?” I told her that was the toothpaste she had used to brush her teeth.

I should add the word “wife.” That was the word she didn’t remember yesterday morning when I told her we were “husband and wife.” Of course, I shouldn’t forget “glasses.” She has so often commented on my glasses suggesting that I might look better without them that I was surprised when she forgot that word.

These are just a few of the words I have had to explain in the past few days. As I have said in the past, I don’t mean that these words are now completely dropped from her vocabulary. I suspect if I showed her all of these objects right now, she might identify them correctly without hesitation. The point is that they are signs her memory for everyday things is beginning to weaken.

Each one is just a little thing. Over time, however, they add up. It alters the flow of conversation. I find that especially noticeable when we are with others. As someone tells us something, Kate has to stop them to ask what a certain word means. Most of them are much less common than knife, toothpaste, and glasses, but it still has an effect on our conversation.

As I have noted before, losing her ability to speak will be a low blow for me. Although the content of our conversations is far from what it was before Alzheimer’s, the sound of her voice remains. It’s certainly not the only connection between us, but it is one I value highly. Yesterday her enthusiasm for the flowers in our family room and patio and the trees behind our house was at a peak. It was a high moment for me just to see and hear her enthusiasm. She pointed out everything that was special to her. Then when she turned around, she saw them again “for the first time.”  I will miss hearing her express enthusiasm like that if she loses the ability to speak, and that is likely if she lives long enough.

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The Longest Time Kate Has Not Remembered Me As Her Husband

The past couple of days have been similar to a few other days this past week. Once again, Kate was up early. Shortly after getting to the bathroom, she said, “Who are you?” I gave her my name and told her I was her husband. She said firmly, “No.” I said, “I’m a friend, and I can help you with anything you need. She didn’t ask again until we were on the way to Panera around 9:00 when she asked, “Why am I with you?” I said, “Well, you’re my wife.” She gave me a look of astonishment and said, “What’s a wife?” I explained, but she was not ready to accept that we are married. I said, “Let’s say we’re very good friends.” That usually works, but it didn’t this time. She didn’t want to hear that either. At Panera, the subject came up again with the same reception. Except for her reaction each time I told her we were married, she acted very normally with me. Nothing would have suggested that we weren’t husband and wife.

At lunch, I said, “I think I might make you my girlfriend for life.” She was insistent that would not happen and told me not to say anything more. I didn’t until we were on the way home from dinner when she said, “Why am I with you?” as she had done that morning. I gave her a similar response and she did the same. I didn’t say anything more until she was in bed. I sat down on the bed beside her. She smiled at me, and I said, “I love you. Do you know how long we have been married?” She smiled again and said, “How long?” That was the first sign of recognition the entire day.

Kate started the day even earlier this morning. She was awake at 6:20 when I got up. I asked if she wanted to got to the bathroom. She said, “Not right now.” I told her I would be in the bathroom and to call me if she needed me. I had just gotten to the bathroom when she called.

She used the toilet and then asked, “What now?” She pointed to the shower. I hesitated a moment because it was so early. I knew she would want to go back to bed. Sometimes, however, she doesn’t want to shower. I quickly decided this was an opportunity I didn’t want to pass up. I told her I would get the shower ready for her. Before getting in, she asked, “Who are you?” When I told her my name and that I am her husband, she didn’t believe it. I told her we were friends. That worked.

After her shower, she wanted to lie down again. I turned on an album of cello adagios at a soft volume. I dressed and told her I would be in the kitchen and to call me if she needed anything. I asked if she wanted me to turn off the music. She said, “Oh, no. Please leave it on.” It was one of a number of reminders in the past few days of how much she enjoys music. It is now 8:30.

BREAK

It is now 10:15. Right after my earlier entry, I heard her say something. I went to the bedroom. She hadn’t called me. We spoke for a few minutes. She surprised me when she wanted to know who I was. I gave her my name and told her I was a friend and that I could help her with anything she needed. She didn’t show any signs of wanting to get up, but it also didn’t look like she was ready to go to sleep. I asked if she wanted to get up. She said she did but needed some clothes. I told her I would get them. She was surprised that I would know where to find them. I told her I knew a lot about her and that I knew her parents. She asked their names. Then she asked my name. I said, “Kate.” She recognized her name and asked for her full name. I said, “Kate Franklin” (her maiden name). I got her dressed without a problem. Even if she didn’t remember that we are married, she clearly trusts me.

The first real spark of life came when she reached the family room. She noticed all the usual things, the room, the flowers, the flowers on the patio, the back yard, and the photos. We spent about fifteen minutes just looking around as she enjoyed what she was seeing. When we started for the kitchen where I had laid out her morning meds, she said, “Don’t you hate to leave this place?” I explained that it was ours and that we would be coming back after getting her a muffin. She was surprised and happy.

We are now at Panera. She stopped working her puzzles and is finishing up her muffin. That means we will probably head back to the house shortly. We won’t be there long before going to lunch. She is happy. I am happy. I am optimistic about the rest of the day.

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The Past Two Days

Monday morning Kate got up early. I was glad because she was up in plenty of time to be ready for the sitter. She was more confused than ever. I’m glad to say that she wasn’t seriously disturbed about it. I wouldn’t call it an anxiety attack, but she was certainly puzzled. It was similar to what I can remember of movies with someone who is experiencing amnesia. This is hard to put in words, but she seemed in a deeper state of confusion and required a little longer to come out of it.

It began when she got out of bed and went to the bathroom. We went through what is becoming a regular routine. She asked about the picture of our daughter. When I told her she, she couldn’t accept that. I started to explain that she and I are married and have two children. That was too much for her. I gave up explaining things. I decided to let her senses go to work.

I took her by the hand to the hallway with the photos of her parents and grandparents. I showed her the picture of her mother taken around the time of her marriage. I told her who she was. She was taken with it as she usually is. We talked about her mother a few minutes. Then we went to the family room where turned on the soundtrack for My Fair Lady. I know she likes that and thought it might jar her memory.

I picked up her “Big Sister” album that her brother made for her. I showed her the cover photo. She didn’t recognize the two children. I said, “This little girl is Kate Creighton.” She said, “That’s me?” I said, “Yes, and this is your brother Ken.” I started to say more when she noticed the photo book of her father’s family. The cover has an ink drawing of the house in which her father grew up. I told her about the house and then opened to the first page of photos of her grandparents. Rather than reading the text, I just told her about her grandparents.

As we were getting started, she heard he song “With a Little Bit of Luck” playing in the background. She started moving her hand to the beat of the music and sang along with the lyrics of the title each time they came up. She asked me to stop talking about the photos for a minute so that she could listen to the music.

Between the photo book and the music, Kate started feeling more at ease. Before long, the doorbell rang. It was our sitter. I told Kate it was Cindy who was taking her to lunch. She looked puzzled. Then Cindy walked in, and Kate responded enthusiastically. That put me at ease. I was getting especially concerned about leaving her in such a confused state. I quickly gathered my things and left for Rotary. When I got home later, Kate was resting. Cindy told me that everything had gone well.

Yesterday was another day of ups and downs. Some of it was humorous. As I opened the car door for her after lunch, she said, “Take off your glasses.” I did. She said, “No, that doesn’t help.” I hope I can get through this without developing a complex about not being handsome.

The day started well. She was up early again. She did have one unpleasant experience. She looked at herself in the mirror and said, “I’m ugly.” I said, “I think you are beautiful.” This has occurred several times before, but her reaction this time was the strongest I have seen. The problem is her weight gain. She is forty to fifty pounds heavier than she was when she was diagnosed. Most of the time she doesn’t seem to notice the change. Twice in the past two days she has commented about drinking with only one straw instead of her usual two. She believes that will result in her drinking less.

We went to Panera but stayed only long enough for her eat her muffin. She worked on a puzzle while eating and got frustrated when she couldn’t go any further. She had completed all but one piece. She couldn’t see it because it was on top of the other pieces. Anyway, we went home where she got on the sofa for what I thought would be a short rest. Instead, she picked up her iPad and worked puzzles for the next thirty minutes before we left for lunch.

On the way home from lunch, we stopped by Target to buy candy for Halloween. That turned out to be a bad idea. I didn’t take into consideration that the candy is at the back of the store. That meant a long walk for Kate. She was ready to leave shortly after entering the store. We came back come where she rested in her recliner for almost two hours.

She went to sleep but woke up a short time before we went to dinner. I asked if she would like me to go through one of her photo books with her. She did. I pulled a chair beside her recliner, and we began. It wasn’t long before we slipped into a conversation about our lives together. We talked about our courtship and getting married. We also talked about our feelings for each other. It was a very tender moment. I recorded about fifteen minutes of it.

Before leaving for dinner she went to the bathroom. When she came out, I told her we were going to dinner and then to a musical performance at our local art museum. I helped her put on a different top that I thought would be more appropriate. Then I told her she looked beautiful. I followed that by saying, “Do you know that you are the most important part of my life.” She was unusually emotional and broke into tears.

All the way to dinner, she was concerned about being with other people last night. She said things like “I hope I don’t embarrass you.” or “I want you to keep me from doing something stupid.” I found it hard to believe that she would have remembered my telling we were going out after dinner, but maybe she did.

At dinner, she did something unusual. She wanted me to sit beside her in the booth rather than across from her as I usually do. I was glad to do that but concerned about her insecurity. We had a nice meal. By the time we were finished, she seemed fine. We went to the concert, and she got along fine. It was a “concert and conversation” with Peter Buffet, Warren’s son. Apart from being a musician, he and his sister work run the foundation established by his father. He spends most of his time doing philanthropic work, hence the reason he was here for United Way. I was amazed that Kate followed at least some of the things. I could tell by her reactions to what he said. She wouldn’t have gotten the details, but she understood isolated remarks. Afterwards, she said, “You’re gonna have to explain this to me.”

As we left the concert for our car, she asked where we were. I told her we were at the museum. She wanted to know the city. I told her it was Knoxville. In the car, she said, “Are we in New York?” I told her we were in Knoxville. She repeated variations of this question all the way home.

At home, she spoke quietly as though others were here. I told her we were the only ones here. She said, “Are you sure?” She was still confused about where she was, but she was happy when she went to bed.

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“Hey, What’s Going On?”

It was never my intention to write a new post every day; nevertheless, I have rarely missed a day since launching the blog almost two years ago. I have the impression that some of my readers have come to expect this. Thus, I worked my way into a self-imposed deadline of 9:00 each morning to post something new. Over the past week or so, I have missed at least two days. On other days I didn’t add a post until late (after 9:00 a.m.) in the day. I started this post at 3:00 p.m. yesterday and didn’t get very far.

So what’s going on? The answer is a lot, and I won’t be able to capture all of it. For the most part, nothing new has happened except that she has required more attention. My best writing time is in the morning, and she has gotten up early several times. Each time she has gone back to bed and rested a little longer. In those cases, she has gotten up for good earlier than I would normally wake her. We’ve made it to Panera two times since Saturday.

Part of the problem relates to the increasing difficulty she is having with her jigsaw puzzles. As a result, she spends less time with her iPad. That has a direct effect on how long we stay at Panera. It is similar at home. She starts to work on her puzzles. She needs my help. That demands my attention. It isn’t long before she wants to quit. Then she doesn’t have anything to do.

Her photo books have come to play an even bigger role in occupying her time. That also means occupying my time. I could, of course, let her look at her books by herself; however, I know that she can’t remember the people or the events surrounding each photo. In addition, she can’t read. I need to read for her and do it in a way that sounds like I am talking to her and not just reading the text. I enjoy doing this. I think of it as quality time together.

Another result of her not using her iPad as much is that she has been going to bed earlier. She gets frustrated with it and doesn’t want to do anything else. Going to bed is easy. She still doesn’t go to sleep right away. It can be well over an hour, but I believe that change has meant she wakes up earlier in the morning. On the whole, I have found her behavior and our daily routine to be more unpredictable. These changes effect the time to write about what is happening or to take notes for later. So that is why I my blogging has been less predictable than usual.

It also makes me wonder about the future. I am doubtful that Kate will become more predictable. Until she is much less active than she is now, I could have my hands full.

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Decline, Sadness, and Dependency

Yesterday I saw the following tweet from another caregiver, Jennifer Fink, who has a podcast called “Fading Memories.”

Watching Mom decline & lose the person she was is a constant source of low grade grief. That’s why support is crucial for #caregivers. I get a lot of advice & inspiration from my #podcase guests. I hope sharing that helps all of you.

I wrote a reply in which I agreed that the hardest part of caregiving for me is just that, watching Kate’s decline. I went on to say that I have been sustained by the knowledge that she needs me. That has been especially true the past two days.

On Wednesday, Kate was especially warm and friendly to our sitter when she arrived. It appeared that she thought Cindy was a long-time friend whom she hadn’t seen in a while. Kate was lying on the sofa and got up to give her a big hug. I chatted with them a few minutes before leaving and was happy to see that didn’t seem disturbed when I left.

When I got home, the situation was different. I heard the two of them talking as I walked in. Cindy said, “There he is.” Kate had been asking about me. She beamed when she saw me but wasn’t very emotional; however, after Cindy left, she told me how glad she was that I was back and that she feels better when we’re together. This is not unusual. She has expressed this feeling many times, but now I sense a deeper recognition on her part that she is very dependent on me.

Yesterday afternoon, we went for haircuts. I helped her out of the car and was holding her hand as she stepped out. In a second she looked afraid like she was lost. I said, “Are you all right?” She said, “I looked around and didn’t see anybody I knew and didn’t know where you were.” She was almost in tears but made a quick recovery as she realized I was with her. It surprised me because it happened so suddenly, and I was holding her hand the whole time.

After finishing with Kate, the stylist walked Kate to the front where I was waiting. I got up to meet her. She hadn’t seen me yet and was peering all around looking for me. When she saw me, she broke down in tears. I walked to her and gave her a hug as she cried. Then, talking to the stylist, she said, “I wouldn’t want to live without him.” (I don’t know that I mentioned it before, but sometimes I sit in a chair next to her as she gets her hair done because she has been uneasy.)

Something that is a bit more typical occurred this morning. As I was finishing breakfast, I heard her say something. I got to the room as she started to sit up in bed. She wanted to go to the bathroom, but first she said, “Where am I?” This began a twenty-minute period during which she asked that or “Why am I here?” multiple times. When she asks, I always tell her the truth even though she has difficulty believing it. I feel that telling her something else could be just as problematic. I am going to think of a way to redirect her attention. That may be the best way to handle this.

I ended up showing her a picture of her mother and taking her to the family room to see if anything would jog her memory. She liked what I showed her, but it didn’t make her feel any better. She asked what she “should do now.” I told her she could go back to bed. That was exactly what she wanted to do. I asked if he would feel better if I brought my things to the room and stayed in the room with her. She said, “Oh, yes. Thank you.” I put on an album of cello adagios, and she has fallen asleep.

Often there is little I can say to comfort her. I think just being with her and talking in a comforting tone of voice works better than anything else.

These experiences have an impact on me as well. They remind me that I am her “security blanket.” I think of that as a challenge, something to live up to, and that overrides any sadness I might feel.

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A Repeat of the Previous Two Days, But . . .
I look at yesterday as another good day, but I have to qualify my judgment. It was good in terms of Kate’s and my relationship. It was not good in terms of the increasing signs of her decline. The past three days have involved a variety of symptoms that signal that she is changing. Let me give you a sense of what the day was like.

Because she had lost sleep night before last, I let her sleep a little longer yesterday. When I went to wake her, I found that she was already awake but didn’t want to get up. My sense was that she responded like a person who was depressed. It wasn’t that she felt a need for sleep but that she just didn’t want to face the day. That is something I have observed on a number of other mornings in recent weeks.

She didn’t remember who I was, but she was cooperative when I invited her to lunch and told her I would help her get ready. Like the day before, she didn’t show any “spark” or sign of enthusiasm until she walked into the family room and saw her flowers. We enjoyed music on the way to lunch. When we arrived at the restaurant, she seemed fine in terms of her mood. She displayed no sign of depression and had a good time at lunch.

She wanted to rest as soon as we got back to the house. As she did the day before, she went to sleep. That has not been typical for her. Not only that, but when she awoke after at least an hour, she didn’t want to look through her photo books or anything else. She just wanted to continue resting. Like the day before, she was very relaxed and peaceful. She was content with no sign of worry. She was “at home.” We spoke for a few minutes. Then she rested but didn’t appear to sleep. Later I told her I wanted to show her something. I didn’t tell her what, but she agreed to look. It was a slide show of photos taken during a trip we took to Bruges and Amsterdam. I was particularly interested in her seeing these photos because there were so many taken at Keukenhof Gardens. I knew that she would enjoy the beauty of the floral displays, and she was. The problem was that she was still tired and wanted to stop after a short period of time. She didn’t go to sleep but rested another forty-five minutes before I got her up for dinner.

At dinner, she displayed more confusion. It began with what is becoming commonplace. She had trouble determining where she was to sit even though I was standing by the seat and pointing to it while I said, “You can sit right here.” When our server brought the bread, she didn’t know what it was or how to eat it. I buttered several slices and put them on her bread plate. Instead of picking up a piece of bread and taking a bite, she used her fork to pick it up. It was awkward for her as she tried to put it in her mouth. I suggested she try picking up a piece with her hand, and she did better. When the meal came, she didn’t know what the rice was, but she liked it as always.

After getting home, I asked if she would like to work puzzles on her iPad while I watched the news. That sounded good to her. It wasn’t long before she was stumped. I tried to help, but that came down to my actually putting the pieces in place for her. She tried another one but was frustrated and wanted to get ready for bed.

I turned on the debate as I prepared to take my shower. Then I asked Kate if she would like me to turn it off. She said she would like to listen a while. She didn’t watch, but she was still listening when I got out. I know she doesn’t know any of the candidates and she couldn’t understand what they were saying. I think she just found it a satisfying distraction. When I went to bed, she was almost asleep. She was very relaxed and seemed to know me.

As I reflect on the past few days, I have thought about two other friends who had spouses with dementia. I had been with them and their spouses less than six months before they died, only a few weeks for one of them. In each case, I was very surprised when they passed away. I had no idea when I saw them that they were so close to the end. Wayne Abernathy called me on Saturday. We had a long conversation during which he talked a lot about the last few months of his wife’s life. He saw it as a time when his wife simply slowed down. As he talked about his experience, it made me wonder if Kate might be at the beginning of this same stage.

I also thought of our friend Nancy Hardwick who lives in Dallas. Her husband died a few weeks after we had dinner with them in 2017. He, too, slowed down after we left. He began to sleep more and said to her, “You know I’m dying.” He was gone in less than three weeks.

I don’t pretend to know what lies ahead. I know that Kate’s mother lived with us almost five and a half years with minimal ability to speak or get around on her own. I don’t want Kate to do the same. I am coming to that place I have heard other caregivers talk about. There is a point at which you believe it is better for the one you love to die than to live. I’m not there yet. For the first time, however, I am beginning to think seriously about her passing and hoping the end will come in a way that is similar to that of Wayne and Nancy’s spouses.

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We’re Always Learning and Adapting.

LIVING WITH DEMENTIA: Please quit trying to make me remember something that I don’t. You see no matter how you keep trying to twist it to make me remember, I only get more & more frustrated & still don’t remember it.  (Written by a person with dementia)

After breakfast and my walk this morning, I went to my computer. I found the message above when I checked in on Twitter. It was timely for me. With the progression of Kate’s Alzheimer’s, I have to be much more careful how I respond to her. Things that have worked in the past don’t anymore. Being a caregiver requires greater attention to more things than most of us imagine at the point of diagnosis. That brings me to what is really on my mind today – Kate and her iPad.

As I have conveyed for years, working jigsaw puzzles on the iPad has been her primary self-initiated activity since she stopped her yard work and use of her computer. I have also pointed to the increased difficulty she has with her puzzles. With my help, she has been able to continue, but we have reached the point at which she can’t follow my guidance. For a while, the primary problem was getting into the store. Once that happened, she couldn’t do anything. It was easy for me to fix but impossible for her.

More recently, the problem has been her ability to locate the pieces she needs and to figure out where to put them. For as long as I can remember, she hasn’t wanted to ask for my help. I would simply notice that she was sitting with her iPad but not doing anything. Then I would help her. My first step was to drop the number of puzzle pieces from sixteen to nine although I go back and forth. My next step was to tell her about the edge pieces. In a nine-piece puzzle there are eight of these including the corners. That leaves only one piece that goes in the center. I discovered that it was hard for her to see the flat sides that identify an edge piece. Sometimes she seemed to get it, but most of the time she seems to have completed puzzles by trial-and-error.

The past couple of days her own approach has failed her. She wanted my help yesterday, and I tried again. This is tough for me because I do know that her lack of rational thought makes it impossible for her to understand, but she wasn’t ready to give up. She still wanted me to help her. I began by trying to get her to identify the four corner pieces. She was unable to recognize them. I put them in place. Then I spread the four edge pieces so that each one was beside the empty spot where it should go. I even put my finger on the piece and then on the space immediately adjacent to it. That was also too much for her. I put them in their places.

Now there was only one empty space directly in the center of the puzzle and one piece left. First, I put my finger on the space where it should go and said, “Can you see that this is an empty space?” She couldn’t. I asked if she could see that it was green. She could. Then I showed her that the whole screen background was green and that it was covered up when she put each piece in place. She was unable to comprehend what I was telling her. Then I asked her to give me her hand. I used her index finger to touch the space. I told her she wouldn’t see the green if she put the piece in that spot. I showed her the piece and asked her to put it in the space. She couldn’t do it.

All the while, I was thinking, “You’ve been doing some variation of this same lesson off and on for weeks. Isn’t it obvious that it’s not working?” That’s why the tweet at the top of this post caught my attention. In addition, I remember and old aphorism. “If you keep doing what you’ve always done, you’ll get what you’ve always gotten.”

I decided to do what I should have done earlier. I redirected her attention, something that is often recommended for caregivers. I reminded her that we had talked earlier about looking at one of her photo books and suggested we do that. She was ready. We looked one of the books for about fifteen minutes before she said she really wanted to look more but was tired. We stopped, and she lay down on the sofa for about thirty minutes before going to dinner. When we got home, she asked what she could do. I said, “How about working on your coloring book?” She liked the idea but had a hard time knowing what to do. She gave up after fifteen minutes and wanted to get ready for bed

So what am I going to do next time? The truth is I’m not sure although I know what approach I will take. Like everything else, losing an ability to do something occurs over a period of time. It comes and goes but gradually fades away. I believe there is still more time for her to enjoy the iPad. I want her to keep trying, but I am not going to be as persistent in trying to teach her what to do. I will look more and more to other options that will be easier for her. I’ll continue to try the coloring book. She has had some minor success with it. Maybe she will catch on to it. I told her there are no rules. She can color any way she wants.

As I have noted before, we are always learning and adapting. There will be more of that in our future.

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Kate’s Aphasia

I am not sure why, but among all the things that I’ve thought about, aphasia has been low on my list. I was well aware that if Kate lives long enough she would not communicate, but I didn’t think that she would begin this process now.

She has had some minor difficulty with her speech for about a year. The problem is progressing more rapidly now. Everyday words like pizza, olives, and hamburger are beginning to drop out of her vocabulary. Sometimes I joke about being her butler. She no longer knows what a butler is. Yesterday, I pointed to a fence that is being installed around a nearby hospital. She said, “What’s a fence?” At lunch, she saw her napkin and said, “What’s this?” I told her it was her napkin. She said, “What do I do with it?”

Some things are understandable. The other night we had dinner at a Mediterranean restaurant. She wanted a dessert and asked what they had. I told her they had baklava. She had no idea what that was even after I brought a piece to her. That is not something that is an everyday part of her vocabulary, so I’m not surprised that word is lost.

Quite often she knows what she wants to say but says the wrong word. A couple of days ago, she said, “I don’t want to swim.” She meant “I don’t want to sing.” While working on her iPad last week, she said, “I got two boys. She meant two puzzle pieces. Another time, she was joking with me and said, “I’m going to put it on your bed.” She meant my head. Another time, she said, “I want to yell you something” instead of tell you something. If I could remember, the list would go on and on.

It goes beyond her vocabulary. She is also beginning to struggle putting words together to communicate what she wants to say. She often starts to tell me something but stops because she doesn’t know how to express it. She looks to me to know. Sometimes I do, but often, I don’t.

So, how do I feel about this change? As you would expect, I am disturbed. Alzheimer’s began to affect our conversation very early. That was related to her memory loss. Since she could not remember things, she was left with little to say. For a good while now, she has talked more, but the conversation always revolves around a set of familiar things. We recite these over and over. Despite the repetition, I enjoy being able to converse with her no matter what we talk about. I especially enjoy seeing the pleasure she gets out of it as well. The thought about her losing this ability is one I don’t want to face.

Having said that, I stop and think about how well we have gotten along so far. It really is possible to enjoy ourselves without her having a memory. It would have been quite different if she had also lost her sight, hearing, and feelings for people and the world around her. That has carried us a long way. To adapt a phrase from “Swing Low Sweet Chariot,” I hope it will “carry us home.”