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Something Old, Something New

For the past few years, Kate as worked jigsaw puzzles on her iPad while I watched the evening news. Now that she is less able to work her puzzles, we are trying to adapt. Without her iPad, she has little to do in the evening. When we return home from dinner, I usually ask if she would like to work on her puzzles. Sometimes she does; sometimes she doesn’t.

Last night, she asked if there was something she could read. What she was really asking is “What can I do now?” I always mention her puzzles, one of her family photo books, watch the news with me, or watch musical performances on YouTube. Last night, she said she wanted to work puzzles. I brought her iPad to her, but she changed her mind. Then I handed her the “Big Sister” album her brother Ken had made for her. This has been a big success since he gave it to her almost two years ago.

As she looked at it, she said, “What do I do?” I told her she could look through it and enjoy the many pictures of her and Ken and their family. She didn’t understand. (This is an experience that happens frequently now. For example, it happens when I give her the toothbrush to brush her teeth. Sometimes it occurs when I open the car door for her.) I tried to explain by commenting on several pictures.

This turned out to be one of those times when she thinks her photo book works like her iPad. She touches a photo and waits for something to happen. Once or twice I have observed her looking at other albums or magazines and doing the same thing. In those instances, she didn’t seem bothered by the fact that nothing happened. That wasn’t true last night. She wanted me to help her, but I found that an impossible task. Nevertheless, she was interested, and I really wanted to help her.

I told her the first thing to know was that touching the picture won’t do anything. I explained that she should just look at a picture and enjoy what she sees. I gave her a chance to try it. She immediately touched a photo and waited for something to happen. I reminded her that nothing would happen. I knew my efforts were likely to fail, but I spent about ten minutes trying to teach her how to enjoy the photos.

Finally, I suggested that we turn on the TV and pull up some Andre Rieu concerts on YouTube. That turned out to be a winner. Music came to the rescue again. I didn’t get to watch the news, but I took my shower and watched with her. We spent almost two and a half hours with Andre. It turned out to be a good evening after all.

As useful as some of the old tools in my box can be, it’s always nice to have new things I can add. Last week, I saw an ad on Facebook that said the company could compile a book of the photos I had posted over the past decade. The idea intrigued me, and I made the purchase immediately. The book arrived on Monday, and I was looking for the right moment to show it to Kate. Yesterday afternoon was a good time. She has rested about two hours, and it was still too early for us to do to dinner. I told her I had something to show her, and we both took a seat on the sofa. It’s a big book with 550 photos, so I was unsure how far we would get. As it turned out, we came close to looking at the whole thing. I was surprised. Recently, she has gotten tired when we have looked at some of her other photo books. Personally, I did find it a lot to go through in one sitting, but I was encouraged by her response and will look forward to looking at it again.

If any of you are thinking of having a book like this, I would suggest you do it more carefully than I did. During the ordering process, the company gave me a chance to edit. I thought it was too much trouble. For my purposes, I still think that was true. If I were doing it again, I would go through the entire book and delete unwanted photos and also change the order in which some of them appear. In my case, the book meets my needs. It gives me one other thing I can use with Kate to make her day and mine more enjoyable.

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More Delusions and Hallucinations

Kate has experienced delusions and hallucinations for several years; however, they are more frequent now. Let me tell you about two of them that occurred yesterday. The first is a variation of one that occurs most often. It involves her noticing small things like specs of food on a plate or table or other little things she sees at home on furniture or the floor. She often speaks of them as “him” or “he” or “thingies” and says other things that convey she believes they are alive. Sometimes I can see them. Often, I can’t. She likes to point them out to me. Whether I see them or not, I generally say I do.

As we walked to the car after lunch yesterday, she expressed concern that she had done something wrong. She didn’t know what it was, but she seemed quite worried. I told her I didn’t know anything that she had done. She asked if I was sure, and I assured her she hadn’t. Once in the car, she started to pick at her teeth, something she does frequently. A minute later, she said, “I got him.” She held out her hand to show me the finger on which “he” was resting. She asked if I could see him. I told it was hard to see while I was driving. Then she wanted to know what to do with him. I keep napkins in the car for moments like this and started to hand her one when she wiped her hand on the side of her seat. She looked sad and said, “I think I killed him.” She was very disturbed. I tried to console her, but she was bothered for a few blocks before her attention was diverted to something else. She frequently picks up “thingies” like this in restaurants. It is common for her to be saddened when she hears about any human suffering, but I had never seen her express any special concerns about the welfare of these “thingies.” This may be extreme example of how active her emotions are right now.

Last night we had another experience with a delusion. She had gone to bed early, 7:30, and went to sleep, something that rarely happens that quickly. She is often awake an hour or two before falling a sleep.

When I got in bed, she was glad to see me. That is not unusual. I think she finds it comforting for me to be in bed with her; however, this time she wanted my help with a project for children. She was concerned because it was her responsibility to carry out the project and didn’t know how. I didn’t find out who the children were or how she had become obligated, but I did learn that it was a project to use animals to help “boys and girls.” I told her I would help and asked what she wanted me to do. She wasn’t sure how to find either the children or the animals. I told her I had some contacts at United Way that would help identify children and could also direct us to existing agencies that might administer the project. I went on to say that I knew people who are involved with animal shelters who might be able to assist with animals. We must have talked fifteen to thirty minutes before I said we had identified a way to approach the problem and could get to work this morning. She was fine with that, and we went to sleep. She didn’t say anything about it this morning, but I am sure there will soon be something else to take its place.

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Another Caregiver Mistake, But a Successful Recovery

I work hard to respond appropriately to the challenging moments that Kate and I face. Sometimes, however, I find myself getting caught in a trap from which it is hard to escape. We had one of those experiences Sunday night after returning from Nashville.

Kate wanted to get ready for bed soon after we got home. Everything went smoothly until she had taken off her clothes. I was ready to help her with her underwear and night gown. Before we could take that step, she got into bed. I asked her to sit on the side of the bed so that I could help her dress. She said she would “in a minute.” I gave her a few minutes and tried again. She didn’t move. In the next few minutes, I explained that I wanted to help her get ready for bed before taking a shower. That meant nothing to her. I showed her the underwear and night gown and told her I would take my shower while she got herself ready for bed. That made her angry.

Then I suggested we take a step back and talk to each other more respectfully. The way she spoke to me changed immediately. She spoke to me in the same tone of voice in which I had spoken to her. In fact, it almost sounded like she was mimicking me. This began a very civil twenty-minute conversation in which she complimented me on the way I handled helping her dress. She was also very clear that I had spoken to her like I was ordering her and didn’t like my efforts to control her. While I was trying not to do that, I realized I was giving her “orders.” I apologized.

She continued to talk, but I found what she said to be confusing. She talked about “the woman.” At first, I thought she wanted me to get the woman to help her. Then I thought she wanted me to show the woman how I did it. I never fully understood. When I asked who the woman was, she pointed to the ceiling. That has become a frequent gesture that is usually accompanied by her speaking to people she sees in her hallucinations.

The upshot of this conversation was that she expressed her willingness to get dressed, but she still didn’t make a move to get ready for me to help her dress for bed. All this had taken forty-five minutes. I told her I didn’t want to push her and that I was going to take a shower. I showed her the clothes and told her she could put them on when she was ready.

I knew that she wouldn’t move while I was gone and wondered how I would handle the situation when I finished my shower. I decided that I would come back to her and apologize because “I forgot to help you get ready for bed before taking my shower.” That is exactly what I did. She responded as I had hoped. She accepted my apology and said that was all right. She was happy and ready for bed in less than two or three minutes. Another crisis was over.

Looking back, I could probably have avoided the whole encounter if I had tried to divert her attention away from getting dressed for bed in the first place, or I could have let her rest in bed for a while and then tried again later. I think I was taken aback when she didn’t follow my instructions the way she usually does. She always asks me what she should do next as she undresses and the puts on her night clothes. The only thing different was that she lay down in bed before we finished. I spent too much time trying to get her to comply. That’s a losing proposition. This was a rare situation, but one I hope to avoid in the future.

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An Unusual Visit with Ellen

Sunday’s visit with our longtime friend Ellen Seacrest was different from those in the past. I’ve always expected that the declines in Ellen’s vascular dementia and Kate’s Alzheimer’s would ultimately change the nature of our visits. To a large extent it has, especially Ellen’s loss of speech. We can only understand a small portion of what she says. Our latest visit, however, was affected by our arriving at a time when the residents had gathered together for a program put on by a dance group from a local church.

Ellen was already seated in the middle of group. One of the staff helped to seat us next to her. We didn’t get to talk much before the program began. The pleasure Kate experienced came from the afternoon activities. The dancing was followed by ice cream that the dancers dished up and delivered to each of us in the audience.

We had only a thirty-minute break to talk with Ellen, but being in the middle of the audience made it challenging to talk with her. Several others around us joined in. In some ways that was helpful since we can’t understand Ellen; however, it also meant that we didn’t get to focus our attention on her the way we have in the past.

We had a big surprise when Ellen told us about someone she wanted us to meet. We couldn’t understand all that she said, but she was enthusiastic about him. In a little while, she rolled away in her wheelchair to greet a man. Then I began to understand. She had found herself a boyfriend. She called to us and told us his name is Mike, but we didn’t get up and go over to them because we were in the middle of the crowd, and the “Music Lady” was about to begin her music program. One of the staff told us that Ellen and Mike had established a relationship, but Mike’s wife hadn’t yet been informed. I know this is not unusual in memory care of skilled nursing facilities, but I hadn’t thought much about Ellen’s establishing such a relationship. I think that is because I felt that most of the residents are significantly further along in their dementia than Ellen. Mike, however, is a new addition. He was among the few not in a wheelchair and did not appear to be much different than Ellen.

We enjoyed the music for about forty-five minutes before we departed. Kate thoroughly enjoyed herself, but I regretted not having more time with Ellen.

Kate was talkative on the way home, especially during the latter part of the trip. She expressed her appreciation to me for caring for her. We talked about things we had in common that had made our relationship strong. For that reason, I was somewhat surprised when we got out of the car for dinner. She said, “I want you to know that I think we will get married sometime.”

Most of the time when she doesn’t know my name or our relationship, I am not very surprised. I realize these moments of recognition come and go all the time. The nature of our conversation and, more specifically, her own comments about our relationship made it seem like it was one of those times when she clearly recognized me as her husband. Of course, it is quite possible her recognition of our relationship was coming and going all the way home. That’s another thing I will never know.

Each time we have these out-of-town trips, I am sensitive for any signs that suggest its time to discontinue them. Nothing happened on this trip that would prevent our going back again. Kate and I had a good dining experience on Saturday night and Sunday for lunch. She also enjoyed the dancing, ice cream, and music even if she didn’t get much of a visit with Ellen. Considering everything, the trip was clearly worth it. We’ll be back.

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A Very Good Week

It was two weeks ago that I described Kate’s sleep issues that kept her in bed all day for three different days. I was concerned about a new pattern that might be emerging. I am glad to report that for the past week she has either gotten up early on her own or rather easily when I have had to wake her. More important than that, she has been cheerful throughout the day. It’s been a long time since I have been able to say that.

Yesterday was another day that I didn’t have a problem getting her up, but it was a day when she was troubled several times with delusions that we were going to be with a group of people she wanted to avoid for some unexpressed reason. When I tried to get her to clarify who she was talking about and what the problem was, she seemed irritated with me and said, “You know.”

We are in Nashville for a visit with our friend Ellen this afternoon. Kate rested an hour after we checked in at our hotel yesterday. When I told her it was time for dinner, she was absorbed by a delusion that a woman had been in our room talking with her about a program to help women. Kate was disturbed that the woman was gone and wanted us to work with her in the program. It took me about twenty minutes to get her ready to leave. She didn’t need to do anything but go to the bathroom, but she was so caught up in telling me about the woman that she wouldn’t get up. Even after we were on our way to the restaurant, she talked about the woman and her project. Despite the amount of time she talked, she didn’t tell me enough for me to understand anything about the program except that it was to help women and that she wanted to be involved. She kept repeating the same things over and over.

This is another case when diversion worked to take her mind off this issue. Once we parked the car and walked into the restaurant, she apparently forgot about it. I haven’t heard another word since.

At 1:30 this morning, she woke up and was confused about where she was. For about thirty minutes, she repeatedly asked where we were. I told her, and she would ask again. Finally, she stopped. I am eager to see what today will be like. She has been awake off and on for almost two hours. She is in good humor although she has had several hallucinations about someone who is here in the room with us.

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“Happy Moments” at Unexpected Times

As a caregiver, I put a lot of effort into thinking about ways to entertain Kate. I am often successful. I know that she responds to music and has some favorites to which she is especially drawn. Her family is also important to her. Showing her photos and telling her or reading about them is usually of interest. Taking “tours” of the rooms in our house is also a winner. I feel fortunate to have a toolbox with a variety of things that work. Of course, there are times when I am less successful than others, but there are also times when I don’t have to work at all to have “Happy Moments.” That was true on Monday of this week.

It was about 6:45. I had a load of clothes in the washer. I was looking forward listening to my book while walking, but first, I wanted my breakfast. The eggs were on the counter, and I was about to put the oil in the frying pan when I heard Kate say, “Hey.” I started to the bedroom and found her in the hallway. She had gotten out of bed and was looking for me. Although she seemed wide awake, she wasn’t sure where she was going and wanted my help.

I took her to the bathroom. Like most days, she wanted me to give her directions on everything. Sometimes when this happens, she resists my help. Not this time. She was very accepting but in a very natural way. She didn’t seem especially insecure and expressed no special emotion.

Of all the things I have worried about helping with bathroom activities were near the top of the list. Toileting and showering involve the most personal assistance, and I have resisted diving right in. Thus, it has been a long, gradual process. Yesterday it was clear that we have found our way to a comfortable place for both of us.

Although Kate always seems to enjoy her shower, she usually resists my effort to get her to take one in the first place. She seemed so compliant that I said, “This seems like a good time for a shower. Would you like that?” She paused a moment and said, “I don’t know.” That gave me the opportunity to be more assertive. I said, “I think that would be a good idea. I’ll start the shower for you.” That is all it took.

One of the things I’ve discovered is that once in the shower, she likes me to play an active role in bathing her. That works for me as well since it is easier than giving her instructions, and we can finish more quickly. She plays the role of director, making sure that I haven’t missed any places.

Kate enjoys the drying off process even more than showering. I have learned it is better to begin in the shower. That works better than walking out into a cold bathroom. Then I take her to the bedroom and put her in a chair where we finish up. At this point, she is fully relaxed, and I often joke that she is at “Richard’s Spa.” She often directs me to places that I may have missed, especially between her toes. I rarely get the deodorant on just the way she wants it. She lets me know right away. This part went swimmingly well. She seemed to be luxuriating in being cared for.

As she does on most shower days, she wanted to get back in bed. Since it was still quite early, that was fine with me. I did wonder what she might be like a little later. Sometimes her mood can change after resting or going back to sleep. The whole process of getting her up, showered, and back in bed had been another “Happy Moment.”

As someone who likes to eat very shortly after getting up and dressed, I was ready for my breakfast. She wanted me to stay in the room with her. I asked if it would be all right if I ate my breakfast and then came back. She was fine with that. After eating, I stayed with her until she woke up about 9:00. She was fine except for wanting me to take her home. I told her I would be glad to and had her clothes all ready for her. I don’t often mention it, but we also have many humorous moments. One of those occurred after she was dressed. I got her hairbrush, and as I did, I thought of an old song our grandchildren used to like, “Where is my Hairbrush?” Kate and I always thought it was a funny song as well. I started to sing it. Kate laughed as I forgot the lyrics. Then I went to Google and played the original song. We both got a kick out of it. It’s just one little thing that helped sustain an already good day.

Her eagerness to go “home” made dressing a simple matter. We were at Panera before 9:45. She worked on her puzzles, ate her muffin, and I took her home. She rested less than an hour before I suggested we go to lunch. She was receptive. As we walked out of the house into the garage, we faced one of our few rough patches during the day. It was bizarre. She was disturbed. It was difficult to understand her. It seems she had some connection with a group of people who had killed a woman and that she hadn’t told the authorities. She felt guilty. When I asked for an explanation, she didn’t want to talk about it. Nothing more was said, and, moments later, she was fine. I’ll add this to my list of things I’ll never understand.

We had a nice lunch and went back to the house where she rested for at least two hours. Then I asked if she would like for the two of us to look at one of her family photo books. She did, and we spent almost an hour reading from a book about her mother’s family. I didn’t try to go through the photos. Instead I read the narrative portion that focuses on biographical information about her grandparents and Battle Creek where her mother was born. She loved it, and although we revisit this album frequently, I loved going through it with her. The lunch and afternoon turned out to be another “Happy Moment.”

The rest of the day also went well except for a brief period after coming home from dinner. Kate worked on her iPad for a short time and became frustrated. She reached a point at which she didn’t know what to do at all. I suggested she take a break and get ready for bed. She was happy to do that. Her confusion continued as she took her medications. I gave them to her one at a time, but she didn’t know what to do with them. She started to put the first one in her glass of water. I explained that she should put it in her mouth and then use the water to wash it down. After the first two pills, she caught on. Then I took her to the bathroom and helped her into her gown. Once she was in bed she was quite relaxed.

The day was a good one. It also captures the way we can shift back and forth between good things and trying ones. I am grateful that most of our days include a preponderance of “Happy Moments.”

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Reflecting on Our “Good Days”

At this stage of Kate’s Alzheimer’s, I think a lot about the amount of quality time we have left. I don’t mean that I bask in sorrow. I don’t, but I recognize she is in the last stage when we are likely to make more adjustments to our lives than we have done before.

At the moment, however, I am particularly struck by the “Good Days” we have. It not only surprises me; it keeps my spirits up. We had two of those days this weekend. I would like to be able to take credit for them, but I think the fundamental cause was Kate’s mood. She was in very good spirits both Saturday and Sunday.

I might also expect that her good mood was accompanied by a lack of confusion, but that isn’t so. Saturday, she appeared to be rather clear-headed except for wondering where she was. I don’t recall her asking my name. That happens off and on. Sunday morning, she was very confused. She didn’t know my name or hers and couldn’t remember them well enough to repeat them. What made me feel good was that she didn’t seem disturbed at all about not knowing. I am thankful that is typical.

In addition to her good mood, our time together seemed special. Our obligations were minimal. The only official commitment was our dinner reservation Saturday night. She was up earlier than usual both days. We didn’t have to rush. That kind of schedule is the best for her and, thus, for me as well.

We also had a couple of special moments on Saturday. Both occurred after resting in the afternoon. One of those was my reading her a portion of a book about her family’s wedding veil. I’ve read it to her multiple times in recent weeks, but she is always taken with it. She did get tired and wanted to rest before we got well into it.

The second experience was after her second rest. She commented on a few things in the family room that led me to suggest that I show her some of the other rooms. On the way to the back of the house, we passed several photos and stopped to look at them while I told her a little about each one.

The next stop was our guest bedroom. Of course, she had no recollection of it at all and liked what she saw. She got tired of standing and asked if she could sit in a rocking chair. I saw a photo album of our children during their earliest years. We spent quite a while looking at it and never got to another room.

When we finished, it was time to get ready for dinner. This was the only moment in the day that could have become a problem. I had planned a nice Valentine’s dinner at one of the restaurants we usually visit for lunch. I suggested we change clothes and had picked out exactly what I wanted her to wear, but she didn’t want to change. I told her we were going out for a nice dinner, and I was going to put on something a little nicer. She was fine with that but wasn’t going to change. I didn’t push her.

A few minutes later after I had changed, she asked what I wanted her to wear. I told her I would get something and brought her the clothes I had picked out. She had apparently forgotten the conversation we had just had a few minutes before. I helped her change, and we were off.

The dinner itself went as I had hoped. We were welcomed by the manager, our server, and another server who sometimes works as a hostess. They had selected a corner table that was perfect for the occasion. The meal itself was quite good. In addition, a couple we know from our music nights at Casa Bella were seated at the table next to us. I don’t recall our talking about Valentine’s Day at all or anything else especially romantic. We just had a good time together.

Kate was up early Sunday morning. We spent a little less than an hour at Panera before returning home where she rested an hour before leaving for lunch. The restaurant was unusually busy. Consequently, it took longer to be served, but we had a good time. I haven’t said anything in a while about her asking Sinatra’s name when she looks at his mug shot, but that hasn’t let up. She is well-aware that she repeatedly asks and wonders why she can’t seem to remember it, but she doesn’t appear to be very disturbed.

She rested after we returned home with music playing as usual. She awoke about an hour before dinner. I suggested we take a look at a few things around the house. We began with some photos in the family room. As often as she has looked at them, I am amazed and happy that she enjoys them just like it was the first time to see them.

From there we went into the living room and dining room where I showed her a number of things that came from her parents’ home. I enjoy telling her the stories behind each of the items, and she was entranced. It was another special moment.

We are both fortunate that repetition has not diminished the pleasure for either of us. She can’t remember, so it is always new. I like telling her things she can’t remember and seeing her reaction as I tell her. I read a lot about other caregivers’ experiences and know that many of them are bothered by so much repetition. I wish I knew how to help them. My experience is different. Whatever the reason, we have been able to maintain a relationship that has been important in helping both of us adapt to all the changes we have had to make. She feels dependent on me and is normally responsive to the things I want her to do. I want to deserve her trust and work hard to make her life as happy as I can. One of the ways I can do that is to answer her questions and do the things she enjoys so much. I believe each of us loves the other more now than at any other time in our marriage. I think that carries us a long way.

I continue to be mindful of the pleasure she and I can experience through her intuitive abilities. I like to think this is something from which other caregivers could benefit to make their loads lighter. At the same time, I recognize the likelihood that many of them are facing other challenges that we have not faced. Among those would be health and financial constraints. I feel for them and am grateful that at this late stage of Kate’s Alzheimer’s, I see little, if any, loss of pleasure that comes from music, beauty, and associations with family. How long will this last? We will see. I am hopeful that it will continue for some time.

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Diversion Seems to Work (At Least Yesterday)

Yesterday, Kate woke up and wanted to go home. We went to lunch. She forgot about home and didn’t mention it again. On a number of other occasions, I have found that going out for a meal is an effective diversion technique.

We had a sitter during the afternoon. When I got home, Kate was resting. I spoke to her, and she talked with me as though I were entering a dream with her. She thought someone had had a baby and asked me about him. At some points, I thought she was talking about having had a baby herself. Other times, it seemed like it might have been a son or daughter though she never said specifically. She was excited, and said, “We have a baby.” She asked “his” name, and I gave her the name of her father. She was thrilled. Not long after that, she asked “her” name. I gave her the name of her mother. She was equally excited. She continued talking about the baby after we were seated at the restaurant. She wanted to know when she would be able to hold it. She also wanted to know where the baby was. I found this to be a challenging conversation. Once I had started to go along with her, I found myself having to get more creative in answering her questions. I decided it might be good to redirect her attention and suggested that we go to dinner. She wanted to rest a little longer and asked if the doctor said it was all right. I told her he said it was fine, and we left for our Friday night pizza.

Her enthusiasm continued in the car and at the restaurant. It lasted so long that I thought the conversation might continue even after we got home. At one point, she asked if the children had called. I told her they hadn’t and explained they had been busy. She couldn’t believe they hadn’t even called and said, “But it’s our baby.” Fortunately, when the pizza arrived, her attention drifted to eating. I didn’t hear a word about the baby after that.

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Examples of Kate’s Decline

Each morning I find myself wondering “What’s in store for today?” Even though most days go well, I am always on alert for problems. That’s how I was two days ago. I knew the sitter was to arrive at 1:00 and that I had an appointment to donate platelets shortly after that. I wanted to get her up in time for us to have lunch together. Around 9:00, I was encouraged when I heard her talking . I went back to the bedroom. She greeted me with a smile and chatted a few minutes. She said she was waiting for someone to take her home. I told her I would be happy to do that. She said that her mother would do it. Then she said it was “that guy” whose name she couldn’t recall. I asked her if she was ready to get up. She wasn’t. I told her I would be in the kitchen and to call me when she was ready. I was going to give her another hour or so before going in again, but less than thirty minutes passed before I heard her say, “I’m here.” She was ready to go home.

I took her to Panera for a muffin and then to lunch. As my previous posts about her sleeping later suggests, she gets very tired. She had taken her place on the sofa in the family room before Mary arrived. She was still there when I returned. During the past two or three weeks, with a couple of exceptions, she appears to have rested the entire time the sitters were here. Although she is comfortable with both sitters, I have the impression that she is going through a stage when she feels especially dependent on me and simply waits for me to come home. I am sure that is true with respect to using the bathroom. I’m only aware of one time she has gone to the bathroom while the sitter is here. That was recently when the sitter helped her get up and dressed after she had slept late.

I see this dependency in other small ways. She likes me to sit beside her when we sit in a booth at restaurant. The same is true at Casa Bella when we are seated at a table for six or eight. She wants to hold my hand more often when we are walking. She wants more instructions about what to do when toileting, brushing teeth, taking a shower, getting ready for bed. She hasn’t given up all signs of independence, but she is coming close to that.

She is forgetting a lot with respect to eating. She often points to the bread on the table at a restaurant and asks what it is. When I tell her, it doesn’t necessarily help. She is still a good eater, but she often fails to recognize the entree on her plate. She doesn’t recognize the salt and pepper at our neighborhood Mexican restaurant. Part of the confusion is that they are in the small Corona beer bottles, but the salt and pepper are clearly visible though not to her.

She also worries more frequently. Sometimes it involves a belief that she has an obligation of some sort. She worries about whether she has forgotten to do something. She also worries about people who have financial and health problems. The other night she talked a good while about some kind of disease that is being transmitted from mothers to their babies. She said there was a preventive medication that mothers can take. She told me she was planning to have herself tested. On the way to dinner last night, she was worried she might have done something to me that she shouldn’t. I assured her she hadn’t.

I also notice she isn’t as cheerful throughout the day. I think that goes along with her being tired. She does, however, have moments off and on during the day when she is very lighthearted and takes great pleasure in teasing me.

Taken together these things and many others are signs of the progression of her Alzheimer’s. We still have “Happy Moments,” but it is clear that I am unable to control everything. Some people suggest the disease always wins. In a sense this is true; however, I consider it a victory that we have been able to live happily, even joyfully, for so long. I intend for us to do as much as we can as long as we can, but I also recognize the reality that Kate’s decline means significant changes in our lifestyle.

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A Nice Day with a Sad Ending

I am often worried that I will have a problem getting Kate up on days when the sitter comes or when we have some other commitment. Yesterday was one of those. I had planned to attend a luncheon sponsored by the health foundation on whose board I had served. It had been a while since I had attended any of their events and was eager to be there. Cindy, Kate’s Monday sitter, had an opening yesterday, so it was all arranged.

To top it off, getting Kate up was no problem at all. She woke up on her own around 8:30. and wanted me to take her home. That meant getting her ready was easy. We drove over to Panera where I got her a muffin and brought her home shortly before Cindy arrived. As usual, Kate was tired and got on the sofa to rest. She was wide awake when Cindy got here. She greeted her warmly and showed no reluctance to my leaving.

I enjoyed the luncheon. I got to see a good number of people I hadn’t seen in a while and sat by someone I hadn’t known and got acquainted with her. It was a therapeutic outing for me.

Kate was still resting on the sofa when I got home. Cindy said she hadn’t moved since I left. She also went to be early.

I watched some of the coverage of the New Hampshire primary and went to bed later. I know that Kate was asleep at least off and on before then. When I got in bed, I discovered that she was very uneasy. We began what turned out to be a long conversation. She wanted me to help her and asked where she was, who she was, who I was, and who her parents were. She repeatedly asked the same questions over and over again for almost an hour. As quickly as I gave my answers, she forgot them. I spoke to her very calmly and suggested that I would be able to show her some photos that might help her understand. She didn’t want to look at anything then. Throughout our conversation she was very comfortable with me even though she didn’t recognize our relationship. I told her we had been together a long time, and she asked if I were her husband. When I told her, she didn’t express surprise. It was a simple acceptance of what I had said. At one point, she told me that these were important things that she ought to know. I agreed and told her to count on me to answer all her questions.

It was a sad situation and one I couldn’t solve. It wasn’t like some other incidents in which she was frightened or desperately worried about why she didn’t know these things, but she was concerned and felt she should know. Finally, we both thought we should get some sleep, and we did.