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A Surprising Conversation This Morning

Kate woke up at 4:30 and again at 5:30 this morning. In both instances, she tapped my arm and softly said, “Hey.” One of those times (I can’t remember which) she said, “Is the party over? Are they still here?” I explained that we were the only ones in the house but didn’t say much more as I didn’t want to encourage an extended conversation at that time. At 5:50, I decided to get up. She was still awake. I told her I was going to get dressed and then get breakfast.

I was just about to take my omelet out of the pan a few minutes before 6:30 when I heard her voice from the video cam. She said, “Hey.” Before I could take the pan off the stove, she called again. When I got to her, she had a big smile on her face and looked wide awake. I asked what I could do for her, and she asked me to sit on the side of the bed. I did. She acted like I was an old friend she hadn’t seen in a while. She asked what I had been doing. I told her I was just fixing my breakfast. Then I answered her in the way that I might have responded to a friend who had asked the same question. I told her about my daily routine minus the caregiving and blogging parts. I mentioned things like exercising at the Y and meeting friends for coffee. When I said something about my involvement with United Way. She said, “What’s that?” I told her about some of the United Way programs. That sparked a conversation that lasted forty-five minutes before I went back to the kitchen to fix another omelet.

The conversation shifted from my telling her what I did to my being the facilitator. She was very talkative. As usual, she was quite repetitive. The major themes were the many needs of people, the ways in which we can help, and the fact that both the giver and receiver benefit. Despite the repetition and stumbling on specific words and phrasing of what she wanted to say, she was remarkably coherent. She talked about the benefits that organizations can play in managing programs like homeless shelters and soup kitchens. I brought up the role that churches can also play in such programs. She also mentioned how individuals could make a difference doing things like preparing food for a family experiencing illness or just inviting someone to lunch.

I was fascinated by hearing what she had to say, but I was also thinking about my breakfast. I was hungry, and she seemed so wide awake that we could go on a long time. I told her I was feeling the need for a little breakfast. She suggested I go ahead. We talked briefly about what a nice conversation we had had. I asked what she wanted to do. She said she thought she would rest a while longer. It’s been a little over an hour. She is still in bed. I’m not sure what to expect next. This is a day for the sitter. I hope she will get up without my having to wake her. That always makes getting up a little easier.

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A Bump in the Road While Preparing for Bed

After dinner last night, Kate and I spent over an hour looking at one of her family photo books. Both of us enjoyed the time together. Then I noticed that it was a few minutes after 8:00. That is when I usually try to wind down with the intent of getting her in bed before 9:00. I try to follow her between 9:30 and 10:00 so that I can get up between 5:30 and 6:00.

As usual, Kate wanted me to give her guidance on what to do. I told her she could start by brushing her teeth. I do that because she normally gets water on her clothes. If she puts her gown on first, she may need to change it before getting in bed. As it turned out, she forgot each of the things I said she should do even though I was giving her only one thing at a time. Before getting in bed, she brushed her teeth three times and used three hand towels and several wash clothes.

She was having a hard time following my directions, and we both got a little frustrated. She must have felt bombarded by instructions. I wanted to take my shower, but I wanted to see that she was ready for bed before then. Once I finally her night clothes on, I went to take my shower with the understanding that she would get in bed when she felt ready.

The first thing I noticed after my shower was that she was not in the bedroom. I went to the other bedrooms to see if she might be in one of them. When I found her, she had just pulled the covers back on the bed and was about to get in. I told her I would like for her to sleep with me. She spoke to me in hushed tones as though someone else was in the house, and she didn’t want them to hear our conversation. I tried to tell her we were alone, but she didn’t want me to speak. I walked her to our bedroom. She seemed a bit nervous and told me she didn’t know where to go. I felt bad about that. This was the first time in a year or so that I have gotten in the shower before seeing that she was in bed. She also felt bad about snapping at me a couple of times during the whole process. She apologized as she normally does. I apologized to her for rushing her.

She must have been unusually tired because she didn’t take any time to pull her hair once she got in bed. She went to sleep rather quickly. That is the first time I recall her doing that in a long time.

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Kate’s iPad

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.

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More Delusions/Hallucinations

Over the past week or two, Kate has experienced more “delusions” than in the past. I’m not actually sure that is the right word. Most often they involve things like a belief that we are somewhere other than our home, that there are other people in the house, and that she sees people or things when nothing is there. When I noticed that she was about to get up yesterday morning, I went to the bedroom. As I approached the bed, she said, “Don’t touch me.” I thought this might be a time when she didn’t recognize me at all, but then she added, “I’ve got a cold.”

As she got out of bed, she insisted that she do it herself without my help. She didn’t want to hold my hand on the way to the bathroom. Once there she continued to be careful about my not touching her because of her cold. What was especially unusual about this was that she has never before shown that kind of concern about spreading her germs to me. I have always been the one to be concerned about passing along a cold to her or her passing along one to me. I didn’t observe any signs of a cold. I didn’t know if she really had one or if she had a dream in which she had a cold.

After finishing in the bathroom, she went back to bed. It was 8:00. She had plenty of time to get back to sleep before getting up for lunch. When I went back to wake her at 10:45, I found that she was awake. This time she didn’t say anything about having a cold. Neither did I see any signs of a cold during the time she was dressing or as we drove to lunch. I didn’t mention anything a cold during lunch, but I did ask if she was feeling well. She said she was fine and never reported any health problem the rest of the day. I am left to believe that her earlier mention of having a cold must have been the result of a dream.

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Reflecting on our Son’s Visit

Since I first informed our son, Kevin, and our daughter, Jesse, of Kate’s diagnosis five years ago, Kevin has made a point of visiting us for long weekends several times a year. I am sure that he has benefitted by making the most of his time with Kate. It has also given me a lift and provided Kate with much pleasure as well.

During his recent visits, her memory of him has faded. That means she hasn’t had the pleasure that accompanies the anticipation of his coming. She does, however, enjoy his presence and connects with him as though she recognizes him as her son in the same way that she relates to me when she doesn’t remember that I’m her husband. She is very at ease with him.

During each visit there are special moments. Their time together on the afternoon of his arrival was one of those. They spent about two hours looking through one of her family photo books. It was the kind of experience I had hoped might occur after I informed both children about Kate’s diagnosis five years ago. I went to the grocery store when they first started. When I returned home, I let them continue this personal time to themselves but joined them a little later.

Of course, life isn’t a constant stream of such moments. Our lives consist of many routine activities that, by themselves, don’t mean anything special. When they are shared with people you love, however,  they are special in their own way. Kevin’s visit was a good example of that. He was here for his high school class reunion, so that was a highlight for him. His time with us, however, was spent going through our activities of daily living.

As Kate’s care partner and Kevin’s father, I am glad that he was able to catch a glimpse of what our lives are like. Since he lives almost 1200 miles from us, it’s hard to know what is really going on. He actively reads this blog, but I felt even that might not fully convey what living with Alzheimer’s means for us.

You might ask why this matters to me. It goes back to the time when my father was caring for my mother who had dementia. The last eight years of my mom’s life, my parents lived right here in town. I was with them a lot, but I didn’t know as much as I should have. I have only realized that as I have cared for Kate. Dad never shared much about his life as a caregiver or Mom’s as a person with dementia. I want our children to have a better understanding of our lives. That was a major factor in my starting the journal that eventually became this blog.

In addition, our son is a care manager. His whole career has involved caregiving. It seems appropriate that he should be fully informed about his parents’ situation. Not surprisingly, he has taken a genuine interest in staying in touch as Kate’s Alzheimer’s has progressed.

Although not in a career that deals specifically with caregiving, our daughter, Jesse, works a lot with seniors and takes a great interest in their lives. I also want her to know about us.

That said, Kevin’s visit was an especially good one because he got to see a very representative snapshot of how Kate is doing and the way in which I care for her. During past visits, her symptoms were much less noticeable. She has changed significantly since he was last here in March. He saw how much her memory has faded. He also was here when she didn’t want to get up in the morning and her desire to rest in the afternoon. What is more important to me is that he could tell how much we still enjoy life and each other.

Because Kate slept late while he was here, he and I had an opportunity to talk about our mutual observations. I am often concerned that my blog posts don’t adequately express what our lives are like. I was pleased to hear him say that he thought there was a pretty good match between what he had read and what he observed for himself.

Since his career is in eldercare, I was eager to hear how he thought our own experience compares to that of other couples living with Alzheimer’s or another form of dementia. My personal impression is that we have been exceedingly fortunate compared to most others. He confirmed my impression.

We were also able to talk about the future. We discussed my plans for a move to a continuing care retirement community in another year and a half. I also told him my own desire to work closely with him as well as Jesse as I get older. My exposure to the caregiving memoirs of children caring for the parents has sensitized me to the problems that can arise. In particular, parents often share very little about things their children will need to know when the parents require help. I would like our relationship to be a smooth one with as few surprises as possible.

Considering all these things, Kevin’s visit was a very good one. His attentiveness both in phone calls and visits has strengthened our relationship and set the stage for a bright future.

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It’s the Thought That Counts.

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.”

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Three Days in a Row with More Confusion Than Usual

After getting up early and taking a shower, Kate went back to bed yesterday morning. As she had done the day before, she got back in bed after her shower and didn’t want to get up. I was going to my Rotary meeting, and Kevin was taking Kate to lunch as he has done on other visits.

Although she seemed to recognize me when she got up the first time, she didn’t when I tried to get her up later. She asked who I was, and I told her my name and that I was her husband. She didn’t believe me. As I usually do, I backed away from trying to convince her. I decided to focus on getting her dressed. We immediately ran into a problem. She was still undressed following her shower and was uneasy about letting someone she didn’t know help her with her clothes. I didn’t push but continued to talk with her. She asked about her clothes several times. I told her I had them right there on the bed and would help her get dressed. She finally consented. As she was dressing, I told her that Kevin was here and would be taking her to lunch. She didn’t know who Kevin was. I explained, but I wasn’t successful. I told her she would recognize him when she saw him.

As it turned out, I was right. At least she acted as though she “knew” him. That didn’t mean she remembered his name or that he was her son. She did, however, greet him happily. Then for a few minutes she gave her attention to the flowers inside and outside. She followed that by asking his name. Then she commented on his voice. She said, “You sound like a nice guy. I don’t know why I say that. I just sense it.”

We went into the kitchen where I had put out her morning meds. While she was taking them, she asked again about Kevin. I told her that he was our son. She found that hard to believe and asked Kevin. He confirmed what I had said, but she was still skeptical.

When we got to my office where I was meeting a colleague, Marianne, I told Kate I would be going to Rotary and she would be going to lunch with Kevin. She said, “Why don’t you go along with us?” I told her I could have invited her to attend my Rotary meeting but thought she might not enjoy it. She agreed, but she still looked like I was deserting her.

After lunch, we met back at the office and then went home where she rested until it was time to take Kevin to the airport for his flight home. From there we went directly to dinner. Once we were home, she wanted to rest again. She rested until 8:00 when I suggested we get ready for bed. I got the impression that her memory of me as her husband was “on again” “off again” for the rest of the evening, but she wasn’t like she was during the morning. She clearly was quite comfortable with me and showed complete trust in me though she had been suspicious in the morning. I don’t think I observed anything that I hadn’t seen before; however, the depth of her confusion seemed greater than I have noticed before. I think she was quite confused much of the day but still functioning pretty well. She even surprised me on the way home from dinner when she made an observation about the two of us. She said, “When you say silly things, I don’t get mad at you. I know you are just trying to be funny.” She may not know my name or our relationship, but she has a keen insight into my personality. She “knows” me.

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A Good Day But a Lot of Confusion

It’s hard to summarize in a heading what yesterday was like. Bare with me as I try to explain.

The day began differently than others over the past few weeks. She has been getting up rather easily when I woke her sometime between 10:30 and 11:00. There have been three or four days when I didn’t have to wake her at all. She waked up on her own at earlier times. In fact, it was earlier enough that we made it to Panera three or four times over the past week or ten days.

Yesterday was different. I was about to get up at 5:50 when she wanted to go to the bathroom. She didn’t display any of the confusion she has on some occasions, but she sounded relieved when she said, “I am glad you are here.” She repeated that a couple of times on the way back to bed. I quickly decided it was best if I got back in bed with her. It was the right thing to do. She was feeling insecure over not knowing who she was, who I was, or where she was. I stayed with her until 6:50. Then I got up to prepare for the day. She was still awake when I left the bedroom. I told her I would be in the kitchen. She was completely comfortable with that.

Before I ate breakfast, she started to get out of bed. I went to the bedroom and found that she wanted to get dressed. It was still early, and I asked if she would like to take a shower. She did. When she was finished, she went back to bed. The fact that she had gotten up and taken a shower so early led me to believe I would have no trouble getting her up for lunch. I was wrong.

We have not been to church in almost a year and had planned to take Kevin with us. To insure that we would be on time for the 11:15 service, I went in to wake her at 10:00. She didn’t want to get up. I decided not to push her. I went back around 10:20. She was firm in her intention to remain in bed. Kevin and I changed our plans for church. I made a noon reservation at Bonefish Grill. Finally, I went back to wake her at 11:00. She still didn’t want to get up, but she gave in with a little encouragement. She wasn’t happy about it, but her mood quickly changed when she saw Kevin as well as the flowers and pictures in the family room.

She surprised me at lunch when she expressed displeasure that I didn’t order a salad for her. I never order a salad for her because she doesn’t enjoy salads. She has never complained before. I offered to get her one or to share mine, but she didn’t want anything but two of my olives.

I wasn’t surprised that she wanted to rest when we got home, but, as usual, she got up rather easily when it was time for us to leave for a live performance of Hello Dolly at one of our local theaters. She did surprise me, however, during the intermission when she struck up a conversation with a man in the lobby. He was standing by the three of us and told us he had first been to this theater when he was a child. Kate asked him what he did. He told her he was a retired radiologist. Kate said, “What’s that?” He began to explain by giving her a tidbit of history including the early experiments of William Roentgen. Kate expressed interest and complimented him about the contributions that he (the man she was talking with, not Roentgen) had made. He tried to play down his own work, but she insisted she accept her compliment. I found it a most interesting conversation. Except for not knowing anything about radiology and x-rays, she seemed quite normal. She was a very active participant in a conversation with a total stranger.

After leaving the theater, we stopped by a pizza place that had been a favorite of our children’s when Kevin would have been as young as two or three. We finished the meal by sharing a piece of cheesecake. Kevin and I didn’t waste any time sampling it. Kate apparently didn’t notice it was sitting in front of us. I put some cheesecake on her fork and placed it on her plate. She still didn’t eat it or acknowledge that it was there. I pointed it out, but she couldn’t understand what I was trying to tell her. She put her plate aside and pulled the plate with the cheesecake toward her. I explained that I had already cut a piece for her. Again, I showed her the fork with the cheesecake on it. She was still confused. After several tries, she finally understood.

When we got home, she asked what she could do. I handed her the iPad and suggested she work on it. She said, “What’s this?” That was not an unusual response. She almost always takes interest in her iPad, but she often doesn’t know what it is. When I mention that she can work puzzles on it, she understands. That is what happened last night. On occasion, she is confused as to what she should do after the puzzle pieces are scattered. Last night was one of those times. I explained, and she went to work. She had a very difficult time. I don’t recall her every having more trouble before. In my effort to help, I may have exacerbated the situation. I was trying to be patient, but I realized the tone of my voice was stronger than usual as I pointed to specific pieces and then to places where they should go. That probably frustrated her even more. I decided it was best if she dropped the puzzles for the night.

Then she picked up a word puzzle book on the table beside her. I noticed that she was holding it upside down. She seemed confused. I turned it right side up. Then she put it aside and picked up the coloring book I had bought her months ago. She has never shown any interest, but I have kept it on the table beside her chair in the family room since then. Once in a while, she picks it up and looks at it. I picked out a crayon and gave it to her. She wasn’t sure what to do with it. I gave her what was an insufficient explanation. Then I decided it was better to demonstrate. I colored a small teardrop object on the page and gave her the crayon. From there she took over and colored for the next twenty minutes or so before it was time to get ready for bed. I was pleased that she was interested and hopeful that she may try it again. That could be a good replacement for the iPad as she loses her ability to work her puzzles. I was also discouraged when I watched her color. She didn’t appear to know what to do. What she colored looked like something that a young child might have done. The most important thing, however, was that she found something she liked.

There are two things I can say about yesterday. First, it was not a good day in terms of Kate’s Alzheimer’s. I don’t remember a day when she has been as confused for as long a period of time. Second, all-in-all it was an enjoyable day. She especially enjoyed the musical. The day was another good example of how mixed our days can be and that the Happy Moments still outweigh the sad ones.

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Miscellaneous Interactions

Yesterday morning I helped Kate to the bathroom and back to bed. She was most appreciative. As I pulled the covers over her she thanked me and said, “I think I could marry you.” I said, “I love you.” She was excited and said, “You do?” I kissed her on her forehead and told her I would be in the kitchen if she needed me. She smiled and closed her eyes.

A number of times I have mentioned that she likes to pull strands of her hair when she rests or when she retires for the night. This can go on quite a long while. Recently, she has tried to make me a partner in efforts. At first, she just wanted me to watch what she was doing. She would explain it as I watched. Then she started asking me to pull her hair. I have tried to get out of it but given in on a couple of occasions. Last night she asked me to pull from the side and back of her head. Instead of doing it with my fingers, I used one of her hairbrushes. That worked fine.

When I finished, she went back to doing it herself. In a few minutes, she wanted me to look more closely at what she was doing. I got up from my chair and walked over to her. She said, “They were getting used to her and that they weren’t afraid anymore.” As she continued to talk, I couldn’t tell whether she was talking about bugs in her hair or the hair itself. I did learn that she has been trying to pull the strands of hair very slowly so as not to frighten them. I played along with her and didn’t act like I thought what she said was strange at all. This is not the first time I have observed her seeing or believing “things” were around or on her. She often sees confuses spots on a restaurant table or on pavement and talks about them as though they are alive.

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A Very Good Day with our Son

Our son, Kevin, arrived Thursday morning from Texas. Weather wise, it was the best day we have had since last May. We took advantage of it by eating lunch outside on the patio of a sports bar a short distance from our house. It was a good start to his visit. Although Kate often has difficulty remembering that we have children, she responded to Kevin as though she knew exactly who he is. We had a relaxing conversation. The fact that it was just the three of us and that it wasn’t noisy added to the pleasure of the moment. There were times then and later in the day when she asked him his name as naturally as she asks mine.

She had a routine dental appointment at 2:00. Kevin went along with us. I thought it was good for him to be a part of the experience though he remained in the waiting room while she saw the hygienist and dentist. For the first time, I went in with her. I did so because of her experience on the previous visit six months ago. At that appointment, she was frightened when the hygienist cleaned her teeth, and they had to cut her visit short. This time I gave her a Xanax before going and went in the room with her. Everything went smoothly. I didn’t think that had anything to do with my being in the room with her, but the hygienist felt it was helpful and suggested we make this a habit in the future. Both the dentist and the hygienist commented that her teeth and gums were in excellent condition.

Once we were home, I picked up Kate’s “Big Sister” album and suggested that she show it to Kevin. They sat down on the sofa and started going through it while I went to the grocery to pick up a few things for Kevin’s breakfast. In just the few minutes before I left, I could see that they were having a good time.

When I returned, they were still enjoying going through the album. Kate continued to relate to Kevin very comfortably. He had a beautiful opportunity to see first hand the kinds of things I have noted in the blog. Since most of the pictures are of family, Kevin was able to tell her all or most of the names. I joined them in the room with the intention of just listening to their conversation. Kate asked me to sit with them, and I did. There were a few things I commented on, but I let the conversation between the two of them continue. At one point, Kevin pointed to a photo of Kate and me and himself. She asked his name. He told her, and she asked his last name. Then she said, “Who are your parents?” After two hours or longer, Kate said she was getting tired. It was also time for us to prepare to leave for dinner, but this conversation, like others she has had with her brother Ken, was a beautiful thing to watch. I love seeing her enjoy herself. That is especially true when she is engaged in conversation with someone with whom she is so comfortable.

We finished the day with a good evening at Casa Bella for Broadway Night. Kate enjoyed herself as usual although she was a little lost in the conversation. The other two couples were there ahead of us which left us with minimal choices about our seating arrangement. Kate and I sat across from each other. We could have sat side by side, but she would have been seated with her back to the singers. Everything worked out well until late in the program when I saw her looking around the room for me. She had forgotten where I was seated. I was able to catch her attention and reached across the table to take her hand. She was relieved and teary but recovered nicely. I doubt that anyone else noticed except the woman seated next to her.