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Update on In-Home Care

Sometime during the past year, I mentioned my having to get up with Kate during the night. At that time, I was speculating (as I often do) about the future and whether I would feel my greatest need for in-home care would be at night rather than during the day. Fortunately, she hasn’t gotten up at night since then. I wish I could say the same for myself. At the moment, I plan to continue the same schedule of in-home care that I currently have had since starting a year and nine months ago. That involves two different sitters. One comes on Mondays so that I can go to Rotary, the Y, an occasional meeting, and run errands. The other comes on Wednesdays and Fridays. Those are also days for the Y. In addition, I use them to meet friends, run errands, and occasionally take my laptop and/or iPad to Starbucks or Whole Foods to check email or work on my blog.

This schedule has worked out well for me. I still don’t feel the need to add any additional time, but that may be coming. I have just accepted membership on another United Way committee. That makes two. I have also been asked to participate on a panel at a conference sponsored by a chapter of the Alzheimer’s Association in Nashville the last of August. In that case, I will take Kate along with me. The conference sponsors are going to provide someone to help with Kate at lunch and during the panel session. I may explore other such opportunities locally. Unless engagements like that occur during a time I currently have a sitter, I will need to arrange for someone to be with Kate.

I feel good knowing that our long-term care insurance cover 8 hours a day. (I originally thought it was 12.) I am a long way from needing that amount of time, but as Kate declines I realize that could change any time. I feel a sense of security knowing that my commitment to move to a local continuing care retirement community in a year and a half opens other options for me. We are now considered members of the community and can eat there (at our own cost), use the exercise facilities, and attend events. It also includes access to their adult day care program, assisted living, skilled nursing, and memory care should we need them.

So at the moment, I feel I am well-covered with respect for Kate’s care. That’s a good feeling.

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A Good Evening at Casa Bella

Jazz night at Casa Bella last month did not go as well for Kate as it usually does. Two differences accounted for that. The first was the way we were seated. I sat diagonally across from Kate instead of directly across from her. That meant she would forget where I was and was a bit insecure. It also made it more difficult for her to participate in the conversation as no one sat beside her until I took that seat a little later. The second was the music itself. Most jazz nights include an abundance of old ballads that everyone our age easily recognizes. A new group of musicians performed, and their selections tilted toward less vocal and more contemporary jazz. It was not something that Kate enjoyed. I understood that at the time. Nonetheless, I couldn’t help being concerned about future evenings and what they might be like.

I am glad to report that we had a good time last night. I made sure that I sat across from Kate so that it would have been hard for her to miss me. We sat with the couple whose company we have enjoyed for the past five to six years. Late in the evening, the couple’s daughter and her husband joined us. We have also known them for many years. The musicians were the same group as last month, but they played a lot of old ballads familiar to the audience. The crowd was made up largely of seniors, mostly 65 and older. It was a very receptive audience. Of course, my only concern was Kate, and she enjoyed the evening as well. That is what matters most.

On a few occasions, I have said something about Kate’s eating habits. Though she does use her fork most of the time, she also picks up her food with her hands. I was especially mindful of that last night. We split a mahi piccata with linguini. She had finished most of her meal when I noticed that she was picking up the last bit of linguini and the capers with her hand. I don’t know whether anyone else at the table saw her, but it is the kind of thing that will be noticed sometime. It makes me wonder if we will reach a stage when I think it best not to be at a table with others. So far, it hasn’t been a problem. Even if our friends notice, they are very understanding.

Day before yesterday at lunch, we had a similar experience. She eats most sandwiches by taking them apart, separating the meat, lettuce, tomatoes, etc. Then she usually picks up the various pieces in her hand. That day she had a hamburger. I cut it into four quarters to make it easier for her to handle, but she took everything apart anyway. To me it looks a bit like a child’s plate with all the pieces of her hamburger strewn about, but there is something about sorting through the items that she likes. It could be that she is looking for things she might not like, perhaps onions, although I am very careful to omit onions from anything I order for her.

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Kate’s Dependence on Me

As Kate has moves from one stage of her Alzheimer’s to another, there is never a clean break in her behavior. It is always a gradual process in which she gradually begins to stop doing things she did before or starts doing things that she didn’t do before. I do, however, have moments when I recognize that the change has become a fundamental shift from the way the was before to a new state. That is the way I feel about her present state of dependence on me.

She continues to assert her independence at times when I help her with daily activities like getting out of bed, helping her dress, holding her hand as she goes up or down stairs, and a host of other little things. The difference now is that they often take me by surprise because they are so much less frequent than in the past. The present norm is that I assist her with almost everything. Yesterday was a good example.

It was Wednesday, another afternoon for the sitter. I always feel under more pressure on those days because I want to let Kate sleep as long as I can but also give her as much time as possible so that we can get to lunch and return home in time to meet the sitter. Generally, she needs about forty-five minutes to an hour to get ready if she doesn’t take a shower. As I reported previously, she didn’t get up at all before I left on Monday. That has occurred only two or three times in the past, but it is hard for me to be sure when to wake her.

Yesterday, I wanted to leave for lunch about 11:30. With that in mind, I started playing some soft music about 10:30. At 10:45, I went in to wake her. I found she was awake but still resting happily. I could tell by the smile on her face that she was in a good mood. I sat down on the bed, and we chatted a few minutes. I told her I would like to take her to lunch and asked if she would like that. She smiled and said she did, but she was still very relaxed though I wouldn’t say groggy or confused. I changed the music to the musical Annie. She likes that, and it’s very upbeat and cheerful. I left to get her clothes.

When I returned, she hadn’t moved. I told her gently it was time to get up and she extended her hand for me to help her sit up. Then she said, “What now?” (She often needs me to tell her step-by-step what to do.) I suggested she go to the bathroom and that I would show her where it was. I helped her out of bed and led her there. She wasn’t sure what to do when she reached the door. I pointed to the toilet and said, “Toilet first.” When she was finished, she said, “What now?” I told her to wash her hands and brush her teeth. She has forgotten that she has a soap dispenser and how to use it. I asked her to put her hand under the nozzle. She didn’t understand. I showed her with my hand. She still didn’t understand. I took her hand and held it, gave her some soap, and told her to put her hands under the faucet and rub them together. She is also forgetting about using her toothbrush. Sometimes she just puts toothpaste on her finger and rubs in on her teeth. I picked up her toothbrush, put toothpaste on it, ran in under the faucet and gave it to her. I won’t go through the routine for dressing, but it is very similar. I guide and help her step by step. The only time she made any effort to assert her independence was while she was dressing, and that was minimal.

Her dependence is also expressed in her feelings about me. She needs me. When I returned home in the afternoon, she was lying awake on the sofa. Mary was seated in a chair across from her. When she saw me, she smiled and started to sit up. She said, “You’re one of my favorite people.” I went over and helped her to her feet. Mary said goodbye and turned to leave. Kate called to her and asked her to wait a minute. Mary turned around, and Kate put her hand on my shoulder and said, “He’s a nice man. A really nice man.” I don’t know if she recognized me as her husband at that moment, but she does sense that I am important to her. This goes along with her other comments about feeling “safe” with me.

As soon as Mary left, she wanted to know what we were going to do. I told her we would go to dinner. Before leaving, she looked at several family photos on top of our entertainment center. I walked over and looked along with her. Then she said, “Will you take me home?” She continues to think we are in someone else’s home. It isn’t constant. We talk about our home and things she likes, but she moves back and forth between knowing it’s our home and thinking it’s not. It is a challenge for me to know exactly what to say at any given moment. Sometimes I play along. Sometimes I don’t. For example, she was disappointed when we got home from dinner. She had wanted to go “home.” In that case, I told it was our home, and I would show her some of the things she likes about it. She didn’t say anything, but she didn’t mention any dissatisfaction once she was inside.

Another sign of her dependence is how much she needs my help staying occupied. That is something that has a greater impact on my personal time. Last night is another good example. Our general after dinner routine is for me to watch the evening news while she works on her iPad. As I have noted previously, it is getting harder to her to work her puzzles. She needs my help. Last night and several other nights recently, I have gone back and forth between my chair and hers to help her. That makes it a challenge to watch the news. After doing that several times last night, she put her iPad down and sat there looking somewhat frustrated. I suggested that we look at one of her photo books. We sat on the sofa and went through most of the “Big Sister” album. She was interested, but it was unusually difficult for her to recognize or remember “key players” – her, her brother, her mother, and her father. Even in photos that were side by side, she found it difficult to identify her brother and her father. She did better recognizing herself and her mother, but far from consistently. I tried to explain that the book focused on her and her brother and that if she just guessed who the boy was in a picture, she would be right if she said her brother. She could never have grasped that. As a consequence, I had to identify the people in almost every picture. Before we finished, I went to take my shower while she continued going through the album. She still seems to derive pleasure from looking at the pictures even though she doesn’t know who the people are. I am grateful for that but can’t help wondering how long it will last. I have always made an effort to go through the albums with her. It is something we both enjoy, but it is also nice for her to be able to enjoy them by herself.

My feeling about Kate’s increasing dependence is much the same as it has always been. Some of it makes caring for her easier, but it comes at a price. I would like her to be as independent as she can for as long as she can. She likes to be independent. I think that is true for most of us. It is sad to see her having to depend on me so heavily.

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Yesterday’s Lunch Conversation

I wasn’t at all surprised that Kate was up earlier than usual yesterday morning. She had rested plenty the day before. She was also alert and even called me by name. She got ready early enough for us to make a trip to Panera before leaving for lunch.

It was an unusually pleasant and leisurely lunch that was a beautiful example of how much pleasure one can have living in the world of a person with dementia. We had at least a thirty-minute conversation that a listener might have found interesting without realizing that Kate has Alzheimer’s.

It began when I said something about a memory of a sailing trip my brother and I took in the Virgin Islands with our two sons when they were about twelve or thirteen. Kate often responds to something like this by saying, “Why didn’t you take me?” That prompted me to say that except for business trips it was the only trip I had ever taken without her.

As I started to tell her the story of that trip, I mentioned Kevin’s name. Our conversation seemed so normal that I assumed she knew that she was Kevin’s mother. Then she said, “You’re a father?” I told her I was and said, “And you’re a mother.” She scowled and said, “No, I’m not.” That led me to ask how she thought we were related. She said, “Friends. Good friends.” I said, “Who are living together.” She frowned and said, “I would not express it like that. I’m surprised that you would even say that.” I said, “Why not? We live together.” She said, “Yes, but you know what I mean.” I said, “We’ve lived together for a long time.” She said, “That’s different.” I asked if she would ever think about having children. She said, “I would like to have children some day but not yet.” Then she said something funny, but I can’t remember what. I said, “That’s one of the things I like about you. You can be funny.” She said, “Only around you. When I am with my girl friends, they don’t think I’m funny.”

About that time, I suggested it was time to leave. I said, “I love you.” I read her lips. She said, “I love you too.” And we left for home.

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Something New, A Sign of Things to Come?

Yesterday was my day for Rotary, and that means the Monday sitter, Cindy. As I typically do, I went to wake Kate about an hour before she arrived. I turned on an album of cello adagios a short time before going to the room. When I got to her bedside, she was sound asleep. I said good morning to her softly. She didn’t respond at all until I sat down on the bed beside her. She looked at me and smiled but didn’t say anything. I explained that it was my Rotary day. I also reminded her that Cindy was the person who takes her to lunch. Then I told her I would like to help her get dressed before Cindy arrived. She indicated that she didn’t want to get up. I asked if she wouldn’t prefer that I help her get ready rather than Cindy. She said, “I can dress myself.” She wanted to rest.

I left the room and came back about two or three other times. We went through a similar conversation with the same results. She said she wasn’t getting up. By then it was close to 11:45. I felt that my only choice was to leave her and let Cindy take care of getting her up later. When Cindy arrived, I took her into the room to let Kate know that she was here. Kate greeted her with a smile and said she was glad to see her. While they talked, I left.

When I got home four hours later, I saw that Cindy was sitting in the family room alone. Kate was still in bed. Cindy said that she had gone in several times to see if Kate wanted to get up. She said she wanted to stay in bed. I chatted with Cindy a few minutes and then went to check on Kate.

She was awake. At first, she didn’t appear to recognize me. I said, “Are you glad to see me?” She said, “Yes,” but without a great sound of relief. At that point, I knew she had been in bed for at least nineteen hours without having gone to the bathroom. I’ve heard other caregivers’ reports of a variety of “toileting” or “hygiene” issues. Fortunately, we have had only minimal experiences with bladder control. This time it was bladder and bowels. It could have been worse. She didn’t have diarrhea.

I said, “I bet you would like to go to the bathroom. I’ll take you.” She didn’t hesitate. She sat up and sat on the bed. Before helping her up, I said, “I’ll be glad to help you. Do you know you I am?” Rather firmly, she said, “Yes, you’re part of the family.” I said, “Do you know the relationship?” She said she didn’t, and I told her. She said, “Oh.”

I took her to the bathroom and prepared the shower for her. I didn’t have to coax her. She was ready. She took a long shower. While she was showering, I put the sheets and night gown in the washer.

When she was finished, she wanted me to help her dry off. Because she had been in bed so long, I thought she would not want to get in bed after her shower, but she did. She relaxed in bed for about thirty minutes before I got her to dress for dinner. At that point she seemed quite normal and even referred to me as her husband. We went to dinner at Chalupas. I was surprised that she didn’t eat all of her food after not having eaten since dinner the previous night.

We came back to the house and had a very nice evening with the news, iPad, and music before turning in at our regular time. The day ended as though nothing of significance had happened. I was concerned that she might have trouble going to sleep, but she didn’t. She is still sleeping as I finish this post.

Having reflected on yesterday’s experience, I imagine that she wanted to go to the bathroom but didn’t know where it was and didn’t feel comfortable having Cindy help her getting to the bathroom, showering, and getting dressed. Before she got in the shower, I asked Kate if she had been scared. She indicated she had. It had to have been an uncomfortable experience for her. I’m puzzled by the fact that she didn’t call for me. Cindy went in several times, but she probably couldn’t remember Cindy was there for long after she went back to the family room. She must have felt alone and didn’t know what to do. I suspect she was awake the whole time. I hope this doesn’t happen again. If it does, I hope I am here.

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Day 2 of our Trip to Nashville

Yesterday’s visit with the Greeleys turned out well though Kate had a rough start first thing in the morning. Morning confusion is becoming more common now. That is especially understandable when she wakes up in a strange place.

As usual, I had gotten up a good while before she awoke about 8:30. She said, “Hey.” I walked over to the bed, and she said, “Who are you?” I asked if I looked familiar to her. She said I did. I gave her my name and told her I am her husband. She said, “Who am I?” When I told her, she wanted to know where she was and then why we were there. I explained about our coming to Nashville to see the Jan and Scott. She said, “Who?” I gave her the background to our friendship and specifically that she and Scott had been friends her entire life. Nothing rang a bell. I didn’t say anything about our having been with them the previous afternoon or having dinner with them. I relied on something I frequently tell her when we are at home. “It’s early in the morning. Sometimes you are confused when you wake up, especially when you are in a strange place. Once you are up you’ll feel better.” Then I told her it was still early and asked if she would like to get up or rest a little longer. She wanted to rest. I told her I would be just across the room at the desk and that I wouldn’t leave her. She said, “Good.” She woke up again two hours later. As she did earlier, she asked where she was and then why we were there. I went through the same explanation as I had done previously.

We checked out of our room in time to meet the Greeleys at our hotel for lunch. I didn’t want Kate to have to walk to the car and back, so I kept our suitcase and computer case with us until they arrived. I made a mistake when Jan and Scott walked in. I should have said, “Look Kate, it’s Jan and Scott Greeley.” Instead I greeted them as I always have. That would have worked in the past, but this time Kate needed me to remind her of their names and that we were having lunch together. Of course, I had told Jan before they arrived, but she had forgotten. When I realized, I called them by name, and Jan gave her name. Then I suggested that I take our things to the car and for the group to wait a moment. That is when Kate got up and said, “I’ll go with him.” That prompted Scott to say, “You don’t have that much. Why don’t we just take them with us to our table.” That worked well.

The lunch also went well. It was a buffet, and Kate and Scott remained at the table while Jan and I got our food. I also brought Kate’s to her. Even though it was not crowded, it was much easier than her doing it herself. Kate accepts this very naturally. This was not one of those times for independence.

As happens so often now, Kate asked that we repeat ourselves a number of times. This is commonplace. It is difficult for her to follow conversations. Even when we are alone, she asks me to speak more slowly. Apart from that and the insecurity she showed when I was about to leave her to put our things in the car, she enjoyed herself as did the rest of us.

Prior to the trip, Scott and I had exchanged emails in which he and I mentioned continuing care retirement communities. He told me that they were looking at one, and I told him about the commitment I had made to one in Knoxville. After lunch, I asked if he and Jan could drive us by the CCRC he had mentioned in his message. I might have expected that it would mean little to Kate, but it turned out to be a good thing. We not only drove around the campus, but we went into the main building. Kate loved the beauty of the place and took special note of the flowers both inside and outside. As I reflect on it, this was the kind of experience in which she can enjoy herself in the company of others without any pressure at all. She was free to walk around on her own and take in things without our pointing them out. It took away all the pressure that conversation represents for her. It may seem strange, but it reminds me of trips to the zoo. She enjoys looking around at things of beauty or special interest to her.

When we left for home, she mentioned how much she had enjoyed the Greeleys. She always has. I knew she would this time. It just took a little longer to feel at ease. I take that as another sign of the progression of her Alzheimer’s.

After dinner last night, we spent some time in the family room looking at the “Big Sister” album that Kate’s brother Ken had made for her a year ago. That has become far more important to her than he could ever imagine. She is enthralled by the cover picture of the two of them. She spends more time with that particular photo book more than any of the others. Last night, she went through it twice with me. I left to take a shower, and she started on it a third time. After my shower, she was still looking at it. I told her it was getting time for us to get ready for bed. She asked if she could take it with her. She held it in her arms and said, “I love it.” She was tired, however, and didn’t look at it again. She got ready and got in bed. She had had a full day and, except for her confusion in the morning, enjoyed every minute.

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A Visit With Nashville Friends

We drove to Nashville yesterday afternoon to have dinner with longtime friends Jan and Scott Greeley. Kate and Scott have known each other since infancy. Their mothers were friends and pregnant with the two of them at the same time. We spent the night in a hotel and will have lunch with them before going home this afternoon.

It had been about six months since we last saw them. Kate has changed so much since then that I was eager for us to visit before she declines much more. I am glad we did. This was the first visit with any of our friends in which Kate’s changes have been so obvious. I had already prepared them in terms of conversation with her. What I hadn’t done was to let them know of her physical changes as well. In fact, it is something I have only mentioned in passing in my blog. They discovered this before we even got in the house.

They saw us drive up and came out to greet us. We walked up two or three steps to enter their house. Kate is fearful of falling, and she struggled to get up the steps and into the house. She also expressed audible expressions of anguish. This, too, is something that is common. As we entered the house she wanted to hold my hand. This is something that has become increasing common just in the past few weeks. She is very unsure of herself in unfamiliar places. It’s more than a fear of falling. She doesn’t know where she is going, so she holds my hand to guide her.

Over the past few days, I had been trying to refresh her memory about our relationship with them. Of course, I know that she can’t remember, but I wanted to try anyway. It was of no use. Even after reminders as we got close to their house, she had no idea where we were going and who we would see. For the most part, she handled herself well. I don’t think she said or did anything that suggested she didn’t know them. I believe she felt a general sense of familiarity with them but not as strongly as I had hoped.

The Greeleys are making a trip to New Zealand in December and had asked me to bring pictures from our visit there in 2014. We chatted about hour before looking at our slides. Kate was tired and wanted to lie down. She took a seat in a lounge chair and rested while we continued the slide show. When we were finished, we walked into the den where Kate was resting. Scott said something, and Kate said, “You’re a pretty nice guy, and I don’t even know who you are.”

Going out to eat gave the Greeleys another sign of her physical challenges. There was nothing dramatic, but she walked very slowly. She was unsure of herself as we entered the restaurant. She wanted to hold my hand most of the way to our table. Getting into and out of the booth she seemed like a person much older than she is.

I find moments like this to be sad ones. Because of their history together, Kate has always felt very close to Scott. It was sad that she couldn’t remember him. He and Jan gave her two photos taken when the two of them were in high school. I will put them in the three-ring binder that I call her memory book, although they didn’t prompt the enthusiasm that I would have liked. Kate has clearly reached a new stage.

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A Good Day, But Not Without Confusion

At 7:45 yesterday morning, I heard Kate make a sound and went to the bedroom. She was awake and smiled at me when I entered the room. I sat down on the bed beside her. She was wide awake, not at all groggy. She was also in a cheerful mood. It was a great way to begin the day.

I assumed that she just wanted to get up to go to the bathroom, but I soon discovered that she was ready to start the day. As I helped her dress, she wanted to do as much as she could and said, “I’m smart you know.” That began a conversation in which she said that women are as smart as men. She questioned whether I believed that. I told her I did. She said, “Good. You gave the right answer.” She said, “Someday women are going to be doing the same things as men.” I told her there were already changes being made. I told her about the enrollment numbers of women in college and in several different fields like medicine, law, and business. She was surprised and pleased. This was not the first time she has brought up the topic of the roles of men and women and specifically the discrimination women have faced. It comes up periodically.

We got ready leisurely and arrived at Panera at 9:00. As we walked in, we stopped to talk with several friends who regularly come for coffee and conversation after morning mass. Because we don’t get to Panera very often, it was especially nice to visit with them. Kate was unusually chatty and funny. One of the men said something about himself. A woman seated a couple of seats from him quickly contradicted him. Kate said, “You must be his wife.” Then he said something to which Kate had a funny comeback. I wish I could remember what it was. It was the kind of thing you might expect from someone who jokes frequently. It was clever and so quick. We all laughed. It was especially funny coming from Kate since it was something unexpected. She didn’t sound at all like someone with dementia.

After an hour, she was ready for home. That didn’t surprise me. She had missed at least two hours of her normal sleep by getting up so early. I also expected she would rest when we returned home. That proved to be correct.

It was a day for the sitter and my day for the Y and to have coffee with my friend, Mark Harrington. We arrived home from lunch a few minutes before Mary arrived. She came in and greeted Kate while I brushed my teeth and got myself ready to leave.  When I told Kate I was leaving, she said, “You’re leaving?” This is now a common question, but she doesn’t seem as concerned as she often does. I told her I would be back. I left with a good feeling.

Upon my return home, Mary was seated in the family room. I usually expect to see Kate resting on the sofa, but she wasn’t in the room at all. Mary called to Kate to let her know I was home. She was in the back of the house. I assumed she had been resting in one of the other bedrooms, but Mary said that she had been up a while and had been walking through all the rooms in the house. She told me that she had also gone outside on the patio. Then Kate walked into the room and said, “Isn’t this a great room?” I recognized right away what was going on. For well over a year she has often thought our house belongs to somebody else and that we have been staying here. For most of the past two or three days, however, that sense has been almost constant. Her going from room to room yesterday reminded me of the one-hour “tour” she and I took of the house about a year ago when she didn’t recognize it as our home. We went to dinner right after Mary left. As we pulled out of the garage, Kate said, “Is this the first time you’ve been to my school?”

She did a little better on her iPad last night but still had problems. She didn’t get into the store as much because she asked for my help before hitting the button that takes her there. Although I spent as much time helping her, I felt better because she didn’t experience the frustration that she had the previous night. I am better able to take the demands on me to help her than I am to see her discouraged.

It was also a day when I felt she recognized me as her husband. I could be wrong. I never asked, but she never said anything to make me think she didn’t. On the way to lunch, she said, “I like you. I like being with you. I even love you.” She called me by name once in the afternoon. She also expressed her appreciation to me for being patient with her. This reminds me of something she said at lunch the other day. She had torn a paper napkin into three pieces and placed her glass of tea on one, her knife and fork on another, and her bread plate on the third. I said, “It looks like you’re all ready for your meal.” She said, “Thank you for being so understanding of all the funny little things I do.” I wonder, “Does she recognize these things really are unusual?” I would love to know all that is going on in her brain.

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Confusion and Frustration

Yesterday was unusual in that the day began without a lot of apparent confusion. I mean that she was happy from the start and didn’t ask my name or hers or where we were the entire day. On the other hand, she experienced a good bit of confusion and frustration late in the day.

As often happens, she asked what she could do when we got home from lunch. I gave her the usual options of working on her iPad or looking at her photo books. She chose the iPad and walked over to the sofa. She asked if she could lie down. I told her that would be fine. Then she wanted to know if she could take off her shoes. Again, I told her that was fine.

This was about 2:00. She spent a little over two hours resting. I believe she was awake most of the time. At least once, it looked like she was asleep. Shortly after 4:00, she looked over at me. I asked if she would like to go out for ice cream. I was sure she would say yes, but she said no. She wanted to continue resting.

After another ten minutes, I asked if she would like for us to look through one of her photo books together. She liked that, and we spent the next forty-five minutes looking at the album of her mother’s family. This time was different. She was really working to remember who each person was as well as all the accompanying information as if she were preparing for a test. Since she was unable to remember any of these things for even a few seconds, she kept asking me to repeat what I had just told her. We spent a good ten minutes just trying to learn the names of the four members of her mother’s family whose picture was on the cover. I think we only got to move forward because I flipped to the opening page, and she focused on it. Despite the trouble she was having, we went through the entire book before I suggested we go to dinner.

After dinner, she usually wants to remain in the family room for an hour or so before going to our bedroom. Not so last night. She wanted to go directly to the bedroom where she began to work on her iPad.

She quickly ran into problems. Usually the most common problem is her getting into the store when she wants to get a new puzzle. She has a hard time remembering that all she has to do is touch one of the puzzles that are pictured. Instead, she touches a button in the top right-hand corner of the screen. That takes her to the store. This happened several times, but the bigger problem was simply figuring out how to put the pieces in their proper places.

We both became frustrated when I couldn’t explain that some pieces have a flat side that goes next to the edge that defines the area where the pieces should be placed. I was never able to get her to understand. When I tried to show her the line that makes a frame around the space where the pieces are to go, she simply couldn’t see it. This is another instance in which her vision is a major part of the problem. It was more than that, however. She couldn’t grasp that the flat side of a puzzle piece must go along the edge of the frame/border. Finally, I suggested she look at one of her photo books.

I went to the family room and brought back the “Big Sister” album. It has always been a winner. Kate’s interest begins with the cover photo. She recognized the two children as her and her brother Ken. I thought we might be off to a good start except that she didn’t comment on their smiles. They are normally the major drawing point for her.

She looked at the picture a moment. Then she asked me what she was supposed to do with it (the photo album). I said, “Just open it and look at the pictures.” She said, “How do you do that?” (She occasionally gets confused about books or magazines. She thinks they work like her iPad. Sometimes she is confused about opening her iPad as well.) I opened the book. She asked, “What do I do now?” I said, “This is a book of family photos. You just look at them and then turn the page to get other pictures.” She said, “Show me how.” I knelt down beside her chair and asked her to look at the pictures on that page. She looked, but she had a blank stare on her face. I couldn’t detect any sign of recognition or interest. It was as though all she could see was a page with a bunch of stuff on it, something I understand is a common experience for someone with dementia.

She wanted my help, and I proceeded to express the comments that she usually make when she has looked at the album on previous occasions. I was careful to talk about the smiles or the photos where there were no smiles. I identified each of the people in the pictures. As we focused on each picture, she kept wanting to touch the picture the way she touches the screen of her iPad. She couldn’t understand that the pleasure she could get from the photos was just looking at them. I tried to help her for about ten minutes before she said she was tired and suggested she might be able to understand better in the morning.

I helped her get ready for bed and put on a Barbra Streisand album that she likes. I left the room for a few minutes. When I returned, she said something about the woman. I would have thought that she was talking about Streisand because she often asks who is singing, but it sounded like she was talking about a woman who was in the house. I asked her what woman she was talking about. It was Streisand after all. She told me she had been talking to her. It is not unusual for her to ask me if I am the one singing when she hears a man’s voice. I guess she thought Streisand was in the room with her. I didn’t try to get her to explain any further.

The experiences of the day were further evidence (as though I needed it) that Kate is on a steeper decline than in the past. I was quite troubled by her difficulty with her puzzles and the photo book. These have been two great sources of entertainment for her. I am sure that working on the iPad will be a thing of the past in the upcoming weeks or months. I hope I am wrong. I am more optimistic about the photo books. As she uses the iPad less, she may experience less confusion about what to do with her photo books. In addition, I expect her interest in family will continue a long time to come.

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Another Interesting Conversation

After dinner two nights ago, Kate took a seat with her iPad in the family room while I watered a few plants on the patio. When I came back in, she had closed the iPad and was leafing through a magazine. She looked disturbed, and I asked her about it.

She said she didn’t want to talk about it then, but she was facing a decision. I asked if she could just tell me what the decision was. She said she wasn’t ready but that she would like to talk with me later. I held back a moment. She continued to sit in her chair with her head to one side and resting on her hand. She was very absorbed in thought.

I tried very carefully not to push her, but I repeated how much I would like to be of help. Again, I asked if she could just tell me what kind of decision she was trying to make. Gradually, she started talking. She began by saying, “I really want to help people.” That led her story to unfold, but not in an orderly fashion nor could I understand everything.

I quickly realized that she had imagined having an experience with someone. She told me she “knows” a woman who is trying to help children showing signs of getting into trouble. I wasn’t at all surprised about the expression of her desire to help people, but I was impressed with the thinking she was doing about the problem of helping the woman and the children and how to address it most effectively. She said it was not an easy thing to do and would require a lot of coordination. She wanted us to think about people we could bring in to assist in the planning and implementation of the program. She was also concerned about the time frame. She said there is a lot of planning that needs to be done before taking any action; however, she felt that there could be a danger of not acting as quickly as we need to. We (she) talked about twenty minutes before she seemed to slow up. I told her she seemed to have a grasp of the situation and the challenges she would face. I suggested that she might think overnight on what we had discussed and just relax a while before going to bed. She agreed, and that ended the conversation. As I suspected at the time, it seemed to be forgotten yesterday if it wasn’t before she was asleep that night.

The experience made me think of something that has crossed my mind before. She recognizes how little she is able to do on her own. Occasionally, she says something that indicates a desire to do more to be useful rather than just working on her iPad. Sometimes she helps me with little things like making up the bed. It would be a far cry from launching the kind of program she talked about the other night, but I could enlist her help with other things like the laundry and other household chores. I have often thought of some type of volunteer work, but most of those opportunities require someone that can be counted on to be consistent in showing up. That could be a problem. I’m going to continue thinking about possibilities.