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Day Two With Kevin’s Family

There is no way to fully understand the way Kate (or anyone else with dementia) is experiencing the world around her. I believe other caregivers try their best to do so. I know I do. Right now, I am wondering how to describe what Kate experienced yesterday. One thing I know is that being in a group is challenging for people with dementia. It certainly is for Kate. That isn’t hard for me to understand. I think most people feel a little awkward in a group where they don’t know anyone.  It has to be even more difficult for someone who doesn’t know why she is there, what she is supposed to do, or have any memories that would help her engage in conversation. Kate’s general approach is to be more subdued in a group. On a few occasions, she is more talkative as if she were trying to make sure she is noticed. That’s the way she was the day Kevin and his family arrived.

Yesterday she was more subdued, and I would say somewhat uneasy. When I woke her, I told her we were going to the zoo with Kevin and his family. She frowned. I didn’t think much of that. She has done that before when I have suggested a trip to the zoo; however, she has always enjoyed it once we are there. I am glad to say that she did yesterday as well. It began as we walked from the parking lot to the entrance when she saw the spring flowers that were starting to bloom. There were many others throughout the zoo that she enjoyed as well.

Of course, the animals are the big attraction. That was true for Kate. She took special pleasure in feeding the Lorikeets from a cup of nectar. That has been a highlight of our other visits over the past year. She also got a kick out of the mother gorilla who was nursing her infant, sea lions and tortoises. This was an easy experience for her. We walked a good distance, and she was ready to leave when we did. I felt good about it because she got in more walking than she is accustomed to, and she also enjoyed everything she saw. The zoo provides an experience that taps into her intuitive abilities. She may not remember names, places, or events, but she can appreciate the sights she sees.

There is something else that made the zoo work well. We split up with Kevin’s family. That meant she could walk at a leisurely pace and stop to look at the animals as long as she wanted. She wasn’t under any pressure.

From the zoo, we went to dinner. She was much more subdued. Sitting around the table with the seven us didn’t lend itself to a group conversation. She said very little and seemed a little bored. When we got home, she continued to be quiet. At first, she looked at a magazine. Then I brought the iPad to her, and she worked puzzles while Kevin and our grandson, Taylor, played Mille Bornes, and the rest of us talked.

I am still trying to grasp what Kate may have been thinking. I know she couldn’t remember that they were her family. I had been telling her quite some time that they were coming. Off and on yesterday, I also mentioned who they are, but those were very isolated instances. Her memory lasts only seconds. She must have asked herself, “Who are these people and why are they here?” I need to be more creative with ways to make her part of the group.

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Visiting with Keven’s Family

On their way into town yesterday, Kevin and his family met us at a restaurant near our home. Kate behaved differently than she usually does. If we had been with strangers, I would have quickly slipped one of “My Wife Has Alzheimer’s” cards to someone who could pass it around the table. There was no need for that since everyone was aware of her diagnosis. Part of the problem may have been the noise level in the restaurant. That made it difficult to hear and understand what people said. Frequently, she had to ask us to repeat things. It was more than that, however. It was one of just a handful of occasions when Kate appeared a bit like a child who might be vying for attention in a group in which she felt overlooked. I think this might be a sign of insecurity, and she responds by trying to be more outspoken than usual. If she experienced any insecurity, it was not reflected in her disguising her memory problems and confusion. I believe that everyone heard her ask my name and hers at least once while we were waiting for our food. They may or may not have noticed that she asked my advice about what to order. Together we decided on the blueberry pancakes, but she forgot and several other times asked about what she could get.

After lunch, we went back to the house for the balance of the afternoon. The grandchildren quickly noticed that an 8 ½ x 10 photo of our eldest grandson, Brian, stood out among an assortment of smaller family photos on the entertainment center. That turned out to be a good thing because it eased us into discussion of who all the people were. Kate actually took the lead in that when she suggested a game in which each of us would pick out a photo and tell the rest of the group who the person or people were. I thought that was especially interesting in light of the fact that she normally has difficulty identifying the people herself.

As we started to pick up on the idea, it was clear that Kate was confused. Since I knew each of the people, I jumped in and showed each picture to Kate and the group and explained who was in the picture. Her Alzheimer’s was obvious in her failure to recognize family in the photos.

The Big 12 playoff game between Kansas and Baylor came on at 3:00. We went to our bedroom to watch the game on a bigger screen. Kate remained behind working on her iPad. I felt her staying behind was a sign of her not feeling a part of the group. Thinking back, I suspect that she didn’t understand where we were going and why. There are many things she doesn’t pick up in group conversations. I went back to the family room and invited her to join us. She did, but she also chose to lie down on the bed and nap while we watched the game.

After the game, Kevin’s family left to check in with a friend with whom they are staying. Kate didn’t make any effort to say goodbye. When they were gone, I asked if she would like to get up. She didn’t and remained in bed until I told her it was time for us to meet everyone for dinner. We ate at a pizza place where we used to take Kevin and our daughter Jesse when they were young. At the restaurant, Kate again seemed a little more childlike. I believe she still felt a little insecure, but she got along all right.

When we got home, I turned on YouTube, and we watched video segments of Andre Rieu concerts. She worked on her iPad for a while and then stopped to watch the videos. She seemed to enjoy herself and talked about what a nice day it had been as she got to bed.

We won’t be getting together until this afternoon when we go to the zoo. Kate usually enjoys seeing the animals. I am optimistic the afternoon will go well.

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Another Dementia Test

Yesterday a nurse contracted with our long-term care insurance company came by the house for a periodic check up on Kate’s condition. I spoke with her in advance to let her know that Kate no longer remembers that she has Alzheimer’s and that I don’t want to remind her. She was mindful of that, but the test itself was a struggle.

There seems to be no way around some of the things that are required of the people who check on the insurance company’s clients. When the nurse came in, the first thing she did was show us her photo ID. She explained that she was there in connection with the in-home care Kate is receiving and mentioned the name of the company that provides our sitter. I don’t believe Kate has understood that she has in-home care from an agency. I have only told her that the sitter is someone I have asked to stay with her while I am gone. Kate accepts that because she doesn’t want to be left alone; however, I don’t believe she thinks of herself as having a caregiver. I know she recognizes that I do just about everything for her, but I don’t think she sees me as a caregiver or that she needs one.

At this stage, I suppose none of this matters since Kate doesn’t remember that the nurse came by at all, much less what she said or asked. Nonetheless, I felt uncomfortable for Kate throughout the thirty-five-minute interview. By far the worst part was observing her miserable performance on the “test.” The nurse handled it well by explaining that there are no right or wrong answers. She was very encouraging when Kate struggled for her answers. Several times she said, “This is ridiculous.” I should add that she also said “Thank you. I appreciate your understanding.” when Kate tried very hard to remember something and couldn’t.

The test seemed rather long to me. That may well have been because Kate was only able to answer one question, and that one surprised me. The nurse asked, “Where are we right now?” Kate hesitated a moment and said, “Home.” I was ready for her to say, “Texas.” Here is a sample of questions she couldn’t answer: Her date of birth, her age, the state where she lives, her address, the President, any president, as well as the month, date, year and season we are in. The nurse also pointed to her watch and asked Kate to tell her what it was. Kate said she couldn’t see it. The nurse got up, walked over to Kate, and let her hold the watch. Kate couldn’t think of “watch.” That was one of two of Kate’s answers that surprised me. The other was correctly identifying where we were. Near the end of her questions, the nurse asked her if she thought she had any problems with her memory. She didn’t hesitate and said, “No.”

By this time, Kate has had quite a few such tests. I suspect I am not the only spouse or child to feel uncomfortable watching his loved one go through this process. Although I am concerned about the next one, I suspect that she is now reaching a point when it may not frustrate her. I know this has to be done, but it runs counter to the way I try to relate to her.

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Dementia and Anticipation

Our son Kevin and his family are coming for a visit tomorrow. Kevin comes about three times a year, but this will be the first time the rest of his family has been here in five years. That and the fact that our lives could be very different the next time they are here makes this one special.

Since I learned about their visit, I have periodically told Kate they would be with us. She is always happy to learn they are coming, but her memory doesn’t allow her to retain it. For the first time, I have been more mindful that dementia doesn’t just remove the past from one’s memory. It also prevents the joy of anticipating the future.

I don’t think I am alone in failing to think about this loss. I’ve read a lot of books by caregivers and people with dementia. I’ve also been in touch with a large number of others via social media, especially Twitter and Facebook. I’ve heard many stories about forgetting people, important events, and the difficulty with conversation because it depends so much on memory. They all deal with the past. I don’t recall any that dealt with the loss of the future.

Everyone derives pleasure from anticipation. The first thing that comes to my mind is my father’s excitement as he approached his 100th birthday. He started talking about it and making preparations as soon as his 99th birthday party was over. Our lives are filled with anticipation of things, big and small. – the birth of a child, a teenager’s getting a driver’s license, college graduations, weddings, reunions, vacations, anniversaries, weekends, starting a new job, moving to a new home, many different sources entertainment (concerts by a favorite singer or group, a popular Broadway play, the latest Star Wars movie), and visits with family and friends.

Looking back, I can’t recall when Kate lost this ability. I know it’s been a long time. I regret that she hasn’t been able to experience the joy of knowing she will see her grandchildren tomorrow or other special moments like our being at Casa Bella for music nights. I am glad, however, that she is still able to experience things in the moment. Those have been very important to us. In fact, they have made the difference in how I feel about the way things are going.

The ability to anticipate the future does not always bring pleasure. The only good thing about knowing Kate’s future, and that has been very important, is that it has caused us to make the very best of our time together. I am glad she is unable to anticipate or imagine what her life will be like in the days ahead. That’s something I don’t like to think about, but it’s hard to escape.

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Social Engagement and Music

I have often expressed how fortunate Kate and I have been. We’ve not had to face some of the problems that others encounter. Social isolation is often a problem for couples living with Alzheimer’s. That has not been an issue for us. It is true that we don’t attend many events that keep us out past 9:00, but in other respects we still get around. I’ll never know if that has played a role in Kate’s doing so well. I do know it has helped us maintain the quality of our lives.

Wednesday night we had dinner with friends we originally met at Broadway night at Casa Bella. We’ve gotten together with them for dinner a number of times in recent months. Kate and I have enjoyed their company. We always have a good time.

Yesterday we had lunch with a church friend. He and Kate became friends when she was the church librarian. His wife died about four years ago. She had Alzheimer’s, and he has been very sensitive about our situation. He stays in touch by phone, but this was our first time to have a meal together. We talked about our getting together again and look forward to that.

It was Opera Night at Casa Bella last night, and we had an especially good time. A new couple joined our table, both church friends. The husband is a professor of voice at UT. The two singers were students of his, both working on their PhDs. There were a number of ties that made it an interesting evening. Our church friends also knew the couple we sit with. For many years, they had been neighbors. The music was also outstanding. Kate and I first heard the male singer when he was an undergraduate four or five years ago. It was amazing to see how much he has improved since that time. The soprano was someone we remembered having sung in our church choir several years ago.

I was pleased to see Kate insert herself into the conversation, but I felt she was just on the edge of doing it inappropriately. We had an active conversation. That can be difficult for her. She handled it well. We have come to know (at least recognize) many of the people who attend. As the crowd gathers, people “greet and meet” those already there. Some of them are aware of Kate’s Alzheimer’s and are especially attentive to her. I like that because large groups are challenging for her.

As we left, Kate was on a high. She loved every minute. As we talked about the evening on our drive home, she expressed how much she enjoyed herself. She said, “I’m so glad we enjoy the same things. It wouldn’t have been as much fun without you.” I told her I felt the same way. She mentioned how much we have in common and that we were “on the same wave length.” Then she said, “And what’s your name?” I told her. There was a pause in our conversation for a few minutes. Then she said, “I’m glad we came.” I knew immediately that she thought we were in Texas. I said, “Me too.”

When I turned into the driveway at our house, she said, “I like the place where we’re staying.” After we pulled into the garage, she commented on what a nice garage it was. Once inside, she needed me to guide her to our bedroom and bathroom, but I didn’t hear anything more that suggested she thought we were in Texas. That is becoming more common these days.

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Meeting Kate’s New Doctor

We are very fortunate to have an excellent gerontologists’ practice here. My mother and father were the first in our family to be patients there. That was 1998. Two years later Kate’s mother joined them. My mother died in 2002, and my dad had a significant other who became a patient. Kate became the next member of our family to go there. She had an excellent doctor who left the practice two years ago. Kate then switched to the same doctor that treated Dad. He was recently assigned to hospital duty. This past Tuesday Kate had her first appointment with her new doctor.

In advance of the appointment I sent the doctor an update on Kate. I have done that before each appointment for the past several years. It enables me to give the doctor an accurate picture of what is happening and the changes that have occurred since her previous appointment. I feel it is a better way to communicate than talking with Kate in the room.

I was very pleased with the new doctor. I went in with high expectations and discovered they were justified. My only previous connection with her was about six years ago when I spoke with her on the phone about my dad. She was on weekend duty and took my call to the office. I don’t remember why I had to call her or what she told me. I just remember that I was impressed with the way she handled my call.

Kate’s appointment yesterday was a simple checkup, not her annual physical. The doctor spent an hour with her. Most of that time she focused on getting acquainted with Kate. Very early in the conversation, she told Kate she would be asking her a variety of questions and would address some of them to me if that would be all right with her. This is one of the things I like about this practice. All of the doctors are very careful to make sure their patients feel they can express their own thoughts about what they are experiencing. That is difficult with Kate because of her memory loss. For example, on the way to the appointment, she complained about pain in her knee where her arthritis is beginning to cause her problems again. She didn’t remember to tell the doctor. When the doctor gave me a chance to make a few observations, I was able to bring that up.

Kate was quite comfortable in the doctor’s office. She was especially talkative with the doctor’s nurse who took her vitals before we saw the doctor. The doctor got to see a bit of her confusion about our relationship. Kate told the doctor that I was her uncle. She looked at me. My expression must have conveyed that wasn’t right. She asked me if that was right. I said, “Actually, I am your husband.” She was surprised. As we were leaving, she said goodbye to each of the staff we passed in the hallway.

It was a good visit. Her next visit is in four months. We had just started that schedule with her previous doctor. That seemed to make sense to me. Except for her arthritis, her problems are those associated with her Alzheimer’s. She seems to be following an expected set of changes that accompany that diagnosis. That is enough to deal with. I am glad we don’t have any other complicating issues facing us as yet.

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Increasing Confusion

Over the past week Kate has been more confused than usual. Her morning confusion is more than her typical grogginess that I am used to. She has no idea where she is when she wakes up. A couple of times, including yesterday, she thought she was in Texas. She said how good it felt “to be here.” I agreed. I was happy that she was not troubled in the least. All day long she asked me where we were. I gave her all sorts of variations hoping I might give her exactly what she wanted. Most often, I said, “We’re in Knoxville, Tennessee.” Sometimes I just said Tennessee. On the way home after dinner last night, she wanted something more specific. I told her we were in Oakwood.

She continues to work on her puzzles even though she has more trouble than in the past. Two nights ago, she asked for my help after dinner. This was one of those cases when she wanted me to explain what she was to do. I tried to keep it simple. I attempted to get her to look for the edge pieces. I was actually surprised that she seemed to catch on and then would immediately try to put an edge piece in the center of the puzzle or select a piece that was not an edge. I spent a good thirty minutes “helping” her. I didn’t have much success. On the other hand, when I left her to take a shower, she seemed to get along all right. Since completing jigsaw puzzles requires rational ability, it is surprising that she can work them at all. As I have suggested before, she appears to go through a trial and error process to place each piece rather than using either the shapes or colors to help her. It takes her seven to ten minutes to complete a 16-piece puzzle.

Along with the confusion, she often does things I can’t explain. For example, as I was finishing up my shower the other night, she came into the bathroom with her iPad, cup, and winter coat. I said something about my planning to come back to the bedroom in a few minutes, she turned around and walked into the bedroom. She didn’t know where to go. I suggested she take a seat in her chair and work on her iPad. She did.

When it was time for her to put on her night clothes, she wanted to do it herself. I gave her the night gown. She struggled with it trying to distinguish the top from the bottom and the front from the back. She had to call for my help. That’s not a new thing, but it is one more example of the growing number of things that are problems for her.

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An Early Morning Conversation

Kate got up at 4:30 this morning to go to the bathroom. As I walked her back to bed, she started a conversation that lasted about fifteen minutes. Here’s an excerpt.

Kate:              “What’s the name of this place?”

Richard:        “This is our house.”

Kate:              “Really? It’s a nice place.”

I got back in bed.

Kate:              “What’s the name of this place?”

Richard:        “This is our house.”

Kate:              “It is?”

Richard:        “It really is.”

Kate laughs loudly when she realizes she hasn’t recognized her own house.

Richard:        “I love you.”

Kate:              “I love you, too. <pause> What’s your name?”

Richard:        “Richard.”

Kate:              “What’s my name?”

Richard:        “Kate, and we are a pair.”

Kate:              “We’re a good pair. Where are we?”

Richard:        “We’re in our house in Knoxville, Tennessee.”

Kate:              “I like it. We’re lucky.”

Richard:        “We’re very lucky.”

Kate:              “Where are we?”

I love our conversations. We are lucky.

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Yesterday’s Lunch-Time Conversation

At lunch yesterday, Kate asked my name and hers. I told her and then mentioned that we were married and have two children. Thinking that she might envision our children as little, I said, “They’re not really children now. Our daughter is fifty.” She was surprised and asked, “How old am I?” I told her we were both 78, and I would soon be 79. She said, “Well, you look it?” I said, “You think I look old?” She pointed at the hairline above my forehead and tried to say, “Look how your hair is receding.” She just couldn’t figure out how to say it.

Then she mentioned my glasses and asked if I always have to wear them. I said, “Only when I want to see you.” Then I told her I was getting new ones. She said, “Are they going to be bigger?” I said “The better to see you with, my dear.” She recognized the phrase and said, “Where did that come from?” I said, “Little Red Riding Hood” and recounted the portion of the story of the wolf in bed dressed up like Grandma. As I was telling it, I mentioned that the wolf had eaten Grandma. Kate reacted with horror and, rather loudly. said, “What?” Then I had second thoughts about the wolf’s having eaten her. I pulled out my phone and Googled “Little Red Riding Hood” and brought up the full story. I started reading it aloud to her. When I got to the part about the wolf, I quickly learned that I was right. The wolf really did eat Grandma. When I read that, she reacted exactly as she had before. It was quite noisy in the restaurant, so I don’t think anyone heard her. I didn’t see any need to get out “My Wife Has Alzheimer’s” cards. I continued to read. We were reminded that the wolf also ate Little Red Riding Hood, and the hunter cut open the wolf’s stomach and saved both Grandma and Red Riding Hood.

Kate was quite taken with the story and how gruesome it was. It’s hard for me to remember exactly what we said after that, but I said something about the changes in the way people look at such stories for children these days, that we take a more sanitized approach to them. It was not a conversation of great depth, but we did talk about how children generally accepted the gruesome elements as part of a fairy tail and focused on the entertaining aspects of the stories and their messages of morality. I was really taken by how engaged she was.

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Sleep and the Monday Sitter

It was almost a year ago that Kate began sleeping later. That has continued to the present although she sometimes surprises me by getting up much earlier. During the past month, she seems to have had less trouble getting up even when I wake her. I am doing that more now, especially on Mondays. That’s the day the sitter comes an hour earlier (noon) than on Wednesday and Friday. We have had a new sitter, Cindy, for four weeks. On two occasions, Kate hasn’t gotten up the entire four hours she was here. I have a sense that Kate didn’t feel as comfortable getting up with her as she did with the previous sitter.

That is leading me to make an adjustment in the way I prepare Kate. Yesterday, I made sure that Kate was up and dressed before Cindy arrived. In fact, we were ready early enough to make it to Panera for Kate’s muffin. We returned home at the same time Cindy arrived. That made for a smooth transition.

I made another change I feel good about. In the past, I would have gotten lunch for Kate. That meant that Kate and the sitter had a full four hours to fill. A year ago that would have been no problem. Kate and the sitter regularly went to Panera for part of the time and spent the remaining time at home. Since that time, Kate has not wanted to go to Panera with the sitter. I suspect she felt less comfortable going there with a sitter as she became more dependent on me. I have kept them occupied by providing DVDs of musicals as well as musical videos on YouTube. On some occasions they have spent the whole four hours watching them.

I’ve been looking for another diversion and think I have found something for them on Monday. Although I enjoy taking Kate to lunch, it is just too rushed for me that day. Even before Kate started sleeping later, I were too pressed for time getting her to lunch and back home by noon to meet the sitter. Sometimes I’ve asked the sitter to meet us at Panera or wherever we were having lunch that day. Yesterday I decided to have Cindy take Kate to lunch at Applebee’s. I thought that would offer them an informal situation where they could visit over lunch. That went well. Cindy said they were there quite a while. I plan to do that again.

I wasn’t surprised to find that Kate was asleep when I returned at 4:00. She has often napped in the afternoon, but that has become more common lately. It is not unusual at all for her to get up in time for lunch and then take a nap immediately after lunch. At first, I was concerned that she might have trouble going to sleep at night, but she didn’t. Recently, that has changed. She used to go to bed around 8:30. Now it is closer to 9:30 and sometimes 10:00. In addition, she doesn’t fall asleep as quickly as she used to. She is almost never asleep when I come to bed.

I haven’t worked out a plan to address the issue. Since it has been easier to get her up in recent weeks, I may try getting her up a little earlier. I would like that. That would enable us to have a more predictable lunch time. Like so many other things, I’ll have to see how it goes and be flexible.