For the first time, Kate’s screen time was zero for the week ending Sunday, May 3. This doesn’t necessarily mean she will never use it again, but it looks like we are at the end of a long and beneficial ride.
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.
I am glad to report that Kate and I have continued reading together. We have now read The Velveteen Rabbit four times. Each time she has enjoyed it just as much as the first time. We have also read more than 100 pages of Anne Frank’s diary. Yesterday, we started Charlotte’s Web and have read more than 100 pages of it.
It has been exciting to see how much she has enjoyed everything I have read to her. She audibly expresses her reactions which seem to be appropriate to the things I am reading, for example, laughter at something funny, sadness when something bad happens. I have been very careful not to overdo it. I stop after chapters in Charlotte’s Web and daily entries in Frank’s diary and ask Kate if she would like to continue. So far, I have been the one to reach a stopping place. One of those times was with the diary. Kate was getting too sad, and I suggested we take a break. She agreed.
It is a special pleasure for me because I actually enjoy what we are reading as well. I’ve always liked Charlotte’s Web and had never read Frank’s diary. It is nice to add a new activity that involves both of us. The down side is that it takes away from my personal time, but I believe it is a net gain in pleasure for me.
Having been successful with The Giving Tree and The Velveteen Rabbit, I decided to try another book that I bought at the same time, Anne Frank: The Diary of a Young Girl. I knew this could be a more challenging read for Kate but thought it was a worth a chance. I tried it Sunday evening after dinner.
I began by telling her a little about the book and that we had visited the place where Anne Frank and her family had hidden for two years. She was interested from the start. I am sure this was a book that she had recommended many times to her students when she was a librarian, but, of course, has no memory of it now.
When I finished the first entry, I asked if she would like to stop or if she wanted me to read some more. She wanted me to continue reading. After each entry, I asked if she wanted me to go on. We read twenty-five pages before I suggested we stop for the night and pick it up later. I was quite surprised she retained her interest for so long. Once again, I was encouraged about my adding reading as a source of pleasure for her.
One of the major themes running through “Living with Alzheimer’s” is change and adaptation. That has been continuous since Kate’s diagnosis. Of course, it really started before that, but I can’t pinpoint a specific date. I can for the diagnosis, so I always use it. At first, our lives changed very little. The primary difference was a focus on the bad news and how we were going to handle it.
Over time, we dropped many things that we had done in the past. Most recently, that has involved Kate’s difficulty working jigsaw puzzles on her iPad. For several years that has taken up 6-8 hours a day. That is now less than an average of an hour a day. This past week there were three days when she didn’t use it at all.
That has put me in the position of creating more activity for her. The sitters and I have been doing that with the aid of her family photo books. That is going well, but I felt the need for something else. She tries reading magazines, but she doesn’t see well enough. Since she enjoys my reading the text that accompanies the photo books, I began to think about reading other things to her. Several things increased my motivation. One of my Twitter friends reads to her mother and said her mother enjoys it. I also have a colleague at the office who read to her mother in the latter stages of her life. It meant a lot to both of them.
In addition, our Rotary club has recently adopted a new project that involves placing children’s books in public places frequented by children. It made me think of buying several children’s books and trying them out with Kate. Two weeks ago, I took Kate with me to Barnes & Noble to browse the children’s collection. It was right after lunch, a time when she almost always wants to rest. I didn’t have much time to do any serious looking.
Last week, I had a conversation about reading to Kate with my colleague. She mentioned The Velveteen Rabbit and The Giving Tree as good possibilities. I went back to Barnes & Noble on Wednesday and looked for them along with other possibilities. They have a pretty large collection, but I didn’t see either book. The next day I checked Amazon and got them along with two other books.
Prior to their arrival on Friday, I looked on some of our book shelves to see what I might find. I saw a book by Erma Bombeck, Family: The Ties that Bind . . .and Gag! I read the two short introductory chapters to her Friday morning. In her humorous way, she first relates what her own birth family was like when she was growing up. Then she describes her present (present being some time ago) family as they take their annual Christmas photo. It’s a funny contrast of the generations. I wasn’t sure how Kate would react, but she enjoyed it, and I plan to read more at another time.
Sunday morning she was up a little earlier than usual. I didn’t want to go to Panera for a muffin and the quickly go to lunch, and Andriana’s wasn’t going to be open for almost an hour. I didn’t want her to feel my reading children’s books to her was, well, too “childish.” I explained about our Rotary project and that she might help me decide if the books I had bought would be suitable for me to give to our project. She, of course, was happy to do that. My first experiment was reading The Giving Tree. It didn’t take long for me to discover that she liked it. She audibly expressed her feelings as I read. I was encouraged by her reaction.
We still had plenty of time before we needed to leave for lunch. I picked up The Velveteen Rabbit and read it. This was a blockbuster. She was touched the whole way and in tears before I got to the end. I admit that I was touched as well, especially by her response, and shed a tear or two myself.
When I finished reading, I put the book down in my lap. We were seated side-by-side on the sofa. She picked it up and started to look through it from the beginning. She looked at the title page and the page of illustrations. I hadn’t paid much attention to the illustrations as I read, so we looked at them. Then I suggested we go to lunch. She held the book up to her chest with both arms around it and asked if she could take the book with us. I told her she could. She said, “Should I take it into the restaurant?” I said it would probably be better to leave it in the car. Then she decided it was best to leave it home. I mentioned that we could read it again if she would like. She said she did.
It was a beautiful experience for both of us. I was hoping she might enjoy my reading to her since she has enjoyed my reading from her photo books, but I wasn’t at all sure she would understand the stories well enough to appreciate them. I feel sure that she missed a lot, but it was clear that her intuitive skills were working. She was clearly moved. Her reaction encourages me to try more. Wouldn’t it be nice if her love for reading that seemed to have been lost could be rekindled in this way? How appropriate for someone who was a lifelong reader until Alzheimer’s entered our lives.
After several years during which Kate worked jigsaw puzzles on her iPad 6-8 hours a day, she has decreased her time substantially over the past few months. She has leveled out the past five weeks. Her total screen time for the past week was 3 hours and 15 minutes. Her daily average was 27 minutes, close to her 4-week average of 25.5 minutes.
The time she would have spent on her iPad has been replaced by resting and looking at photo books. The latter she usually does with me and also with the sitters. Last night was a notable exception. After dinner, she and I spent about thirty minutes looking through her “Big Sister” album that her brother made for her. Then I wanted to watch a football game, and she wanted to continue. She did that for almost forty minutes. I was pleased to see that because that would give her something she could do on her own; however, I can easily see that it might be hard to retain her interest for long since she has such difficulty recognizing the people in the photos. That includes her as well as other members of her family. On the other hand, sometimes she does recognize her mother, her father, her brother, and herself. Maybe that can sustain her for a while. I am sure both of us would like that.
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.
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.
Since giving up her computer and then her yardwork, Kate has been dependent on her iPad for all of her self-initiated entertainment. The past several years she has spent as much as eight hours a day working jigsaw puzzles on it. The past few days she has spent very little time with it. The last three nights when I checked the battery level, it was at 88% of capacity or greater. That is the best measure of how little it was used this week.
Some of that relates to her sleeping and resting. Until a year ago, we went to Panera almost every morning. We usually stayed more than an hour and sometimes two hours during which she worked steadily on her puzzles. Now it is unusual for her to get up before 10:30 or 11:00, and we go straight to lunch.
Similarly, she used to use her iPad at home after lunch and often at Barnes & Noble. We haven’t been there in several months. She usually rests after lunch, sometimes as long as two and a half hours. Thus, the sleeping/resting explains why she is using the iPad so much less than in the past, but that isn’t all. She also finds it much more difficult to work her puzzles. She asks for my help significantly more, but she also has more trouble understanding what I tell her. My instructions mean nothing. She is generally more persistent in trying to complete her puzzles, but, increasingly, she just quits or asks me to complete them.
I know she will have to give up the iPad sometime in the future. I just hope she can hold on a while longer. I’m not counting on it, but, perhaps, her photo books and the coloring book may fill in the gap.
Long before Kate’s diagnosis, one of the first signs I noticed was that she often failed to prepare for dinner. We had eaten dinner out a good bit since she retired, but we still ate at home for most of our evening meals. Gradually, I noticed that she wasn’t shopping for groceries or thinking about dinner at all. I responded by suggesting that we eat out whenever she hadn’t prepared our dinner. Then I began to cook a few meals. I didn’t want to do that all the time, so I started alternating between a few home-prepared meals with meals I brought in from restaurants.
Kate appeared not to notice the shift in responsibility for meals from her to me, and rarely offered to help. As I recall, that suited me because it was hard for her to do things the way I thought they should be done. Difficulty following procedures is another of the symptoms that accompanies Alzheimer’s.
She has rarely offered to help with any of the household chores; however, several times in the past few months, she has done so. At this point, I felt it was good for her to feel useful. Each time I accepted her help.
Last night as we returned home from dinner, I stopped in the driveway and told her I was going to get the mail. She said, “I’ll get that for you. Just go on, and I’ll meet you in the house.” I gladly accepted but was concerned about her walking from the mailbox back to the house. I moved the car forward but stopped before entering the garage. That enabled me to watch what she was doing.
When she got out of the car, she stopped to look at the plants along the driveway. I watched to see if she would remember to get the mail. She didn’t. She walked up the driveway to the back of the house. She stopped at several shrubs and pulled off a few small limbs. This was a reminder of the days when she spent as much as 6-8 hours a day doing just that. It’s been about three years since she stopped because she had stripped the shrubs of all their leaves as well as the branches. They had either died or were in such bad shape that I had to remove eighteen of them. Last year I engaged someone to get the landscaping back in shape. The yard is now getting back to where it was before.
I wasn’t worried that this might be the beginning of repeat of that experience. Instead, I was especially appreciative of Kate’s desire to help at this particular point. After all, her memory doesn’t permit her to follow through with almost anything she starts. It reminds me of an old song, “Little Things Mean a Lot” and the saying that “It’s the thought that counts.”