Key Events from Yesterday

Kate has never been a breakfast eater. I am. The result is that we have eaten breakfast together only occasionally since we married now almost fifty-seven years ago. That has occurred most often when we were traveling and also periodically attending a monthly breakfast with a group from the Y. She got up early when the children were with us and when she was working, but she would quickly drink a glass of orange juice and eat a cup of yogurt. Now she generally sleeps until time for lunch. On those occasions when she gets up early, we go to Panera where she eats a blueberry muffin. When she gets up, I have already eaten. That came to an end yesterday.

I woke up about 3:00 yesterday morning and didn’t get back to sleep for a long time. As a result, I slept later than usual. I am sure the fact that it was only the second day of daylight saving time was also a factor. At any rate, I got up about 7:15 instead of 5:45 to 6:15 on most mornings.

It was close to 8:00 when I was about to fry a couple of eggs. I heard Kate say something and went to the bedroom. She greeted me warmly, but she was eager “to get outta here.” I told her I would be happy to take her. Normally I would take her to Panera, but this wasn’t a normal day. I hadn’t eaten breakfast. I decided to take her to Eggs Up Grill where we could have breakfast together.

I got Eggs Benedict, and Kate had blueberry pancakes. She hadn’t remembered what pancakes and syrup were, but she enjoyed every bite. It turned out to be a very nice way to begin the day. As happens when we go to Panera and back, she never mentioned wanting to “go home” or “get outta here” again (until next time).

Once home, she was ready to rest. I put on some relaxing music. She got on the sofa in the family room and went to sleep. She awoke about thirty minutes before the sitter was to arrive. I asked if she would like for us to look at one of her photo books. She liked the idea, and we sat together on the sofa and started one. It was only a few minutes before she said she was tired. She leaned her head on my shoulder, and we sat there listening to the music.

It was a very peaceful moment until I heard the doorbell ring. I told Kate it was the sitter and that I would be going to Rotary. I knew when I said it that the transition was too abrupt. She sat up straight, crossed her arms and gave me a dirty look. She was more disturbed than I would have expected. Fortunately, when she saw Cindy, she smiled and greeted her enthusiastically. I will make sure to follow my more typical pattern in the future. I like to stay a few minutes after the sitters arrive. I don’t have that much time on days when I have Rotary and will be more careful next time.

On the way to dinner, Kate told me that I take good care of her and continued to express her appreciation during the ten-minute drive to Chalupas for dinner. She emphasized that she could not live without me. I could tell by the way she said it that she understands just how dependent she is.

We had an unusual conversation at dinner. I wish I could tell you more about it. I had finished my meal and was waiting for Kate to finish hers when she started talking about the servers and kitchen help in the restaurants we frequent. This is not a new topic. She often asks me if I would like to have a job doing similar work. She seems to be worried about both the income that people make and the non-financial rewards that accompany this type of work. Her thinking goes beyond restaurants to many other types of jobs.

As she talked, it was clear that she was very relaxed. I think she was just enjoying talking. She failed to complete many of her sentences by saying, “You know” and then moving on. She also referred to “him” or “her” or “they” and “them.” That also made it difficult to understand who she was talking about. The topic also changed several times as well.

I paid our check, and she continued to talk. Several times I asked if she was ready to leave. Each time, she said, “In a few minutes.” I wasn’t able to make much sense of what she was saying, but she seemed happy that I was listening to her. After almost fifty minutes, she finally agreed to leave. The conversation ended after getting up from the table.

Kate continues to  be aware of many things she can’t do. That concerns her. I believe her talking this way was another instance of trying behave like a normal person. Conversations are difficult for her in terms of knowing what to say. When we are with other people, she also has trouble finding an appropriate entry point between the comments of the rest of us. I think the conditions were just right last night. It was just the two of us. We had had a relaxing meal. She was in the mood to talk, and I was a supportive listener. I just wish I could have understood what she said.

Lots of Unpredictable Things, But There are Daily Patterns

I have come to appreciate the experiences of other caregivers who report the unpredictability of people with dementia. After seven or eight years of a rather steady daily routine, I don’t claim to be able to predict what Kate will be like from one moment to the next. There is one pattern, however, that seems to have emerged. Mornings are the most challenging times. The biggest problem is Kate’s waking and being confused or frightened. Thankfully, this doesn’t occur often, but it is strikingly different and more unpleasant than the way she has been in the past.

My way of making sense out of these experiences is to think how I would feel if I woke up and didn’t know where I was, who I was, or what I should do. Fright seems a natural reaction. It also makes sense to me that after being asleep all night, Kate hasn’t had any external stimulation that would give her a sense of comfort. Once she gets up and is exposed to the house, to me, and our routine, she feels more at ease. This usually occurs before we leave for lunch.

Some days I have to work harder, but very gently, to get her up and oriented. For example, yesterday morning I awoke about 5:00 and quickly decided to sleep another hour before getting up. At 5:45, Kate said, “Who is here?” I said, “I am.” She said, “Who are you?” I said, “Richard.” She didn’t say anything. I asked what I could do for her. She said, “I’m scared.” I asked if she could tell me what had scared her. She said, “I don’t know.” If it were not for our previous experiences and what I have learned about dementia, I might have probed to see if I could identify the problem. As it was, I know that when she says, “I don’t know,” I’m not likely to learn anything by asking questions.

I told her I wanted to help her. She asked my name again. Knowing that this might be a day when she sleeps later than usual, I asked if she wanted to go to the bathroom. She said she did and asked where it was. I told her I would show her. She was unsteady and confused.

When I got her back to bed, I asked if she wanted me to stay with her. She did. I got my laptop and took a chair beside the bed. I also played some relaxing music while she went back to sleep. Then I went back to the kitchen. It was over an hour before I went to the bedroom. I told her I wanted to invite her to lunch and asked if she would like to go with me. She did and got up and dressed rather easily. I think the key was not pushing her. It might not have been as easy for me if she hadn’t gotten up so early in the first place. We had plenty of time. We were the first people to arrive at the restaurant. That was a first.

She is generally all right in the afternoon, but in the past few months, she has experienced more delusions and/or hallucinations. This typically happens after she has been resting a while. I think that while resting she is drifting in and out of sleep and appears to have had a dream. She often talks to someone who is “not there” or to say something to me that suggests I have experienced whatever she has just experienced. The good thing is that she isn’t disturbed at all. Sometimes she is especially happy. That often happens when she believes she has an hallucination involving someone she apparently hasn’t seen in a long time. I say that because of the look on her face and the sound of the voice.

We had an experience yesterday afternoon that is a good example. She had been resting for more than two hours, and I walked into the kitchen for a few minutes. When I walked back into the family room, she got a big smile on her face and pointed to me. I said, “Well, I guess you recognize me?” She said, “Who are you?” I said, “Me.” She asked my name, and I told her and asked if it rang a bell. She wasn’t sure. I said, “I bet I know your name?” She said, “What?” When I told her, she said, “How did you know?”

I walked over to her and told her I knew a lot about her and her family. I don’t recall exactly what she said after that, but she conveyed that she didn’t know the words or how to say what she wanted to express but wanted to learn. She hoped I would be able to stay around so that she could learn from me. I told her I would be happy to teach her. I also said that she had a number of photo books with lots of information about her father’s and mother’s families as well as one her brother had given to her.

By then, it was time for dinner. I told her we could look at some of the books after we got home. As it turned out, she was tired and wanted to get ready for bed. She had forgotten about the books, but we will soon look at them as we do so often.

My explanation for this experience is similar to what I said about her morning fright. She isn’t frightened, but she has gone through a period of time (as long as two hours) when we have had minimal interaction. It’s not quite like the lengthy overnight absence of external stimulation, but it results in a sense of confusion. It’s as though the circuits of the brain have been asleep and need time to wake up.

Our evenings between returning home from dinner and going to sleep are clearly the most predictably happy and relaxed times of the day for both of us. By the time I get in bed, she has been there at least an hour. Except on the few occasions when she is sound asleep, she is always glad to see me. We often comment on having a nice day and express our love for each other. Then we peacefully drift off to sleep.

I believe the predictability relates to the fact that we have no commitments after dinner. It is simply a time to relax. I do try to keep to a routine bedtime for both of us, but that seems to occur without having to work. For at least an hour, I play YouTube music videos on the TV. Then I put on even more relaxing music on our audio system. It’s a peaceful time of the day.

Looking to the future, I suspect there will be a time when we start having lunch at home and, perhaps, separately. Doing so would prevent rushing her. Right now, I believe it is more important for us to maintain our active lives outside the home. In the meantime, I will continue to make the mornings as free of stress for Kate as I can. That means waking her gently and offering her comfort when she needs it.

With a Little Bit of Help from Our Friends

Yesterday I received a private message from one of my Twitter friends who asked how I was getting along. He is a well-recognized speaker and advocate for caregivers. His primary message is the need for caregivers to get help. His book tells about his own experience of trying to do it all and the toll it had taken on him. I replied that I am still doing well and let him know a little about my support system. His question was timely since my experiences the past two days illustrate the kind of support that keeps both Kate and me going.

The first person to express concern about Kate was our pastor who, at that time, did not know about her diagnosis. He called to ask if he could take me to lunch. That was five or six months after we received the news of her Alzheimer’s. Toward the end of our meal, he took a more serious tone as he asked me how Kate was getting along. He caught me off guard. She had resigned her volunteer position as church librarian two years before, but I didn’t think anyone had suspected a problem. After all, Kate was still getting along quite well.

We have gotten together periodically since then. On two or three occasions, I met with him briefly at church. In recent years, Kate and I have joined him for lunch. One of those was Tuesday. These lunches have always gone well. Kate has been an active participant in our conversations. This week was no exception.

That same day I received a phone call from Dorothy Hinely, a longtime friend who lived in Knoxville many years prior to moving to Virginia. (We first met her in church about forty-five years ago. Our lives have been intertwined in a variety of ways since then. Our daughters are best friends.) She was in town and wanted to arrange a time for us get together. We settled on dinner Tuesday evening. We had much to talk about, and Kate handled herself well even though she couldn’t remember our history with Dorothy.

I serve on two different United Way committees, and one of those met yesterday at noon. Ordinarily, that would work fine because I have a sitter for Kate; however, the sitter doesn’t come until 1:00. On a previous occasion, I asked a church friend to take Kate to lunch at 11:30 and take her back home for the sitter. This time I asked my colleagues at the office if they could stop by Panera and join Kate for lunch. They were happy to do so. I was eager to know how things had gone, so I dropped by the office later that afternoon. I was pleased to hear them say that Kate had gotten along well. That makes me happy. It’s something I would not have expected when she was diagnosed.

Apart from special social occasions like these, many other people have played a role in supporting us. On Tuesday, we received a beautiful hydrangea from the young woman who usually serves us at the Sunset Café where we have lunch on Thursday. It’s the kind of thing one doesn’t expect at all.

Last week I got a call from a man who was a stranger until we met him at Panera three or four years ago. Several months ago, he and his wife moved into an assisted living facility on the far side of Knoxville. He invited us to be his guests for lunch.

Last night at dinner, we saw Kate’s doctor who stopped at our table to say hello. We have seen her at this restaurant and one other several times before. On the way out, we saw a man and his son whom we have seen many times. These were brief social encounters but ones that make both of us feel good.

We also keep up with several long term friends in Nashville. There is nothing like being with close friends with whom you have shared many experiences and changes in our lives since college days and shortly thereafter.

These are just a few examples of the kind of support we get. I find that it occurs everywhere we go.  We are not socially isolated. I suspect few, if any, of the people who play a role in supporting us realize how important they have been to us. Many of them don’t even know about Kate’s Alzheimer’s, but I consider all of them to be a part of our team.

I don’t mean to deny the difficult aspects of “Living with Alzheimer’s,” but we find acts of kindness all around us. That keeps us focused on how fortunate we are. Yes, Kate and I are getting along “remarkably well.” It’s clear, however, that we are not doing this alone. We get a lot of help from our friends, acquaintances, and even strangers. I am grateful.

I May Not Understand It, But a Lot Is Going On in Kate’s Brain.

Over the past three days, Kate has displayed a variety of symptoms that illustrate how active her brain is even if it isn’t working the way it is supposed to. It began Friday morning when she experienced the kind of fright that kept her in bed all day a couple of times in the last three weeks.

Based on the previous experiences, I decided I would be more relaxed this time. When she said she didn’t want to get up, I lay down in bed and talked with her a few minutes. I had already put on some music. She liked it and asked me not to talk so that she could hear it. We listened a little while, and she began to perk up. That made me think getting her up might be easy. I was wrong. She told me she was scared. When I asked what she was scared of, she said she didn’t know. I remained in bed until she appeared to be asleep. Then I took a seat in a chair beside the bed.

I decided not to worry about our having lunch together. The sitter could do that. Half an hour before the sitter arrived, I told Kate the sitter was coming and wondered if she would rather that I or the sitter help her get up for the day. She said she would prefer that I do it. That was two hours from the time I had started to wake her.

She was able to get up without a problem and was ready when Cindy arrived. Kate thought I was going with them and gave me a disapproving look when I told her I wasn’t, but she didn’t say anything. I helped her into Cindy’s car, and they were off.

We went to a different pizza place that night. The hostess asked if we wanted a table or booth. Kate has been having trouble sliding across the seat of a booth, so I requested a table. Before we sat down, Kate said she didn’t like the table and pointed to a nearby booth. That’s the first time I recall her indicating a preference. I went back to the hostess stand and asked for that booth.

I almost always take her to the bathroom at home before going out but had not done so this time. Right after the server took our order, Kate wanted to go to the restroom. I asked the hostess if it was a restroom for one-person knowing that is better in terms of my going with her. She said it had three stalls. I discretely explained that Kate has Alzheimer’s, and I like to help her. She checked and found no one was in there. She said she would watch for anyone else who might want to use it. I accompanied her, and all went well. I was relieved. I feel much better when we can take care of toileting at home.

Back at our booth, Kate was concerned someone was out to get her. I asked who, but she didn’t know. She didn’t say anything more and quickly forgot. The balance of the day went well.

At 2:30 Saturday morning, she woke up and wanted to know what she should do. I told her it was the middle of the night, that she had no obligations and could relax and go back to sleep. We went through a number of variations on the same question and answer for about fifteen minutes before she went back to sleep.

At 5:00, she was awake again and wanted to go to the bathroom. I got up to help her, but she changed her mind. We talked for a short time before we were both asleep. We were going to a luncheon following a funeral mass for someone we know from our music nights at Casa Bella. I was concerned that I might have difficulty getting her ready. She surprised me as I began my morning walk. I saw that she was getting up. I went to her and found that she was wide awake. We made a trip to Panera and returned home where she rested.

While resting, she chuckled a good bit. When I asked what was so funny, she said, “You know.” A little later, she said, “Don’t you like the ‘try.’” I had no idea what was so funny or what she meant by “try.” Her confusion with words is getting worse. The easiest one for me to understand is “shows” for shoes. Sometimes she uses “shows” for socks.

I was a little concerned about the luncheon because I expected a crowd of people she wouldn’t know. That turned out not to be a problem. We were seated with two people we have known for a long time. Of course, Kate did not remember them, but she handled things well. She did ask a lot of questions that were obvious signs of her memory problems. These involved asking the name of the restaurant several times while sitting with the daughter of the woman whose mother opened the restaurant eighty years ago. We have been sitting her three nights a month for six years. The people at our table were very understanding.

It was very noisy. At first, that startled Kate, but she quickly adapted. When we left, she said she had enjoyed it. I was surprised because it was just the kind of situation I try to avoid because it can be so hard for her.

When we returned home, she wanted to rest again. After a while, I noticed that she was uneasy. I asked if there was anything I could do to help her. She said there was and began a lengthy conversation similar to others we have had. She was worried about a young man. She said that I know him, but she couldn’t think of his name. I tried guessing. That didn’t help.

What I learned was that she wanted to offer some financial help to this man. As she talked, she moved from talking about this specific man to a program to help promising boys and girls who did not have the financial resources to enable them to continue their education after high school.

She wanted my advice. This was very much like a recent middle-of-the-night conversation. She talked about helping people in her hometown of Fort Worth and was concerned about locating young people and a person or organization to administer the program. I gave her several ideas, and she asked if I would coordinate everything. I agreed, and she felt better about.

There is more, but I will continue in another post.

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.

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.

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.

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.

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.

“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.”