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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.

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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.

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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.

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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.