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Yesterday

We had another good day yesterday. It was a good example of how little time we spend at home on a typical day. Kate slept a little later, but we made it to Panera for almost an hour before going to lunch. After that, we came back home. That left us about two hours before our hair appointments at 3:00. Knowing that Kate doesn’t like to stay at home for long, I gave her an option to go to Barnes & Noble. She opted to stay at home.

About an hour and fifteen minutes later, she got up and went to the bathroom. When she returned, she was ready to go. It was 2:30, so I asked if she would like to go for our haircuts then or wait another fifteen minutes at home. She wanted to go the hair salon. That’s what we did. As it turned out that worked well. The person who cuts our hair did not have a 2:30 appointment and took her right in. It was a day for color, so I had time to run back home for a while before returning an hour later for my haircut.

By then it was 4:00. That left us time before we were to leave for jazz night at Casa Bella. I asked if she would like to go home or to Panera. She wanted to go to Panera. I have often commented about the importance of Panera and other restaurants to both of us. It puts us in centers of activity. We often see people we know and engage in brief conversations. In addition, we meet new people who also come regularly.

Although Kate obviously enjoys being at Panera, I have never heard her make a comment about it until yesterday. She loves children and had been watching a young child in his mother’s arms as she got herself a drink. Then she said, “Panera’s a nice place to be.” She went on to say something about the surroundings and the people that we see. When she says things like this, I am reminded of how much she takes in. It’s a happy moment for me. It also makes me think. I’m afraid I sometimes underestimate her. I know it is common for other people to underestimate what people with dementia can understand. We are easily drawn in that direction, even caregivers who should know better.

We left Panera in time to change clothes before going to Casa Bella. When Kate was ready, she was carrying a turtleneck sweater and pair of pants that go with an old warm-up suit I used to wear to the Y in the morning. I didn’t say a word. She brought them to the car but didn’t take them into the restaurant. I would have said something if she had started to do that.

It was another beautiful evening of music and socializing. We sat with one couple we sit with every time we go for one of their musical evenings. That’s three times a month. The other couple has joined us several times in the past few months. They are all interesting people, and we get along well. Kate doesn’t talk much but enjoys being with the group, and she loves the music. It was a terrific way to end the day.

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Becoming Needy

As a caregiver who is regularly trying to assess where Kate is on her journey and the significance of the changes I observe, I also recognize the impossibility of define clean breaks representing the transition from one stage to another. There is just too much overlapping. I think what happens is that I have to notice a variety of specific things before I have a sense that she has made any significant changes. That is what has happened over the past few months including the past few days.

When I think about the specific things she has done, they aren’t sufficient by themselves to make me think we are at a new stage of our journey. I have commented on Kate’s increasing dependence on me, but it seems like it’s more than just dependence. She seems to be entering a stage in which she is needier than she has been in the past. I say that based on the increasing number of questions she asks. They aren’t simply about people’s names. For example, yesterday she got a glass out of the kitchen cabinet and wanted ice. She couldn’t remember where to go for ice. At the time, we were standing at the island directly across from the refrigerator where she has been getting her ice for 21 years including a few hours before. As with the loss of names, this doesn’t mean that she has forgotten and will never remember how to get ice again. It begins with one instance and gradually becomes worse. She also shows signs of forgetting which light switch to use to control a specific light or fan. Within the past couple of days she asked me where to turn off the light in a hallway to the bedrooms, a switch she has used multiple times each day for 21 years.

Another indication of her neediness, occurred yesterday when she told me she was glad to see me after I returned home from the Red Cross. It was just saying it. It was the sound of her voice that conveyed how much she meant what she said. It is also in the frequency with which she tells me how glad she is that we met at TCU.

One more of many examples is something that happened last night. As I got ready to take my shower, she called to me. When I reached her, she said, “What should I do?” I told her it would be a good time to get her night clothes and relax a little before going to bed. She looked a little puzzled. I asked if she would like me to get her night clothes. She said she would. Then she followed me to her room where I saw a gown on the bed where our housekeeper had folded it and left it for her. I asked if she would like that one. She said yes, and we went back to our bedroom. A short time later, using her hand signals, she asked if she could use her iPad, something that she needn’t ask at all.

About thirty minutes ago, I took her to the hairdresser. When we left, she was carrying a pair of pants and a wash cloth with her. When we arrived, she asked (again with hand signals) if she should take them in. I told her she could leave them in the car.

All of these things tell me she is not only more dependent, but feeling confused and needy as well. As these changes take place, I feel an increasing desire to help her. That seems like a pretty natural feeling to have after fifty-five years of marriage.

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Another Good Visit with Friends

Tuesday, Kate and I drove to Nashville for a visit with our long-time friends Ann and Jeff Davis. We have had an unusual amount of social contact in the past week. Both of us have enjoyed being with close friends. I wasn’t surprised that this visit was also a good one. Kate was very actively engaged in conversation. That was mostly when she and Ann were talking to each other. It is much harder for her to participate in a conversation with all of us. I suspect part of that is not being able to easily follow what is being said. I also think it’s because we quickly move from one person to another. I know this requires a lot on her part. Despite that, she held her own and enjoyed herself.

Although Kate can carry on a conversation, her memory loss means that she no longer retains many bits of useful information. For example, she loved and admired her mother and talks a lot about her. With her memory loss, she has forgotten most of the specific things about her mother, but retains her feelings and impression of her. Thus, she communicates what a special person her mother was, but the examples she uses are often inaccurate. Of course, these are things that the typical listener would not catch, but I do. This makes me think of fiction writers who have created characters and situations in which they are placed. The facts may be fiction, but they often tell a truth about life. Kate is doing something similar with people and places. It doesn’t tarnish my own satisfaction that she is able to function in a very normal way.

As we drove away, I commented on what a good visit we had. Kate agreed. Then she said, “What is her name again?” I told her, and she said, “And his name?” I told her, and she asked, “Where are we?”

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At Home to Replace the Sitter

Today was my day to donate platelets at the Red Cross. When I got home, the first thing the sitter said was, “She is so smart.” I said, “I know she is.” Then Mary explained why she said that. She told me that she was watching a TV show with a judge in a courtyard scene when Kate said, “That’s not right. It’s . . .” My Kate, always the English teacher, had corrected the grammar used by someone on the show. Mary added, “And she wasn’t even watching the show. She just heard it.” I told her our grandchildren could tell their own stories of being corrected by Nan. Then she said, “Last week, she corrected me.” I didn’t tell her I have been corrected quite a few times over the years. I love knowing that she is still able to detect errors in grammar.

After Mary left, I walked over to Kate. She said, “I’m so glad to see you.” I said, “I’m glad to see you.” Then she added, “I really mean it. I feel so much better when you are here.” When I had walked in the room, it sounded like the two of them were getting along fine. I said, “But you like Mary, don’t you?” She told me she did, but “it isn’t the same.” I gave her a hug, and she said, “I really mean it.” One of the many things for which I am grateful is that Kate is so loving and appreciative. That strengthens my desire to be the best caregiver I can be. She makes it easy.

After that, she said she wanted to brush her teeth before leaving. As usual, she didn’t even ask about going out, she just assumes when I return we will leave together. So far that is what we have done every time I have come home after the sitter has been with her, never because I initiated it.

In a few minutes, I heard her call me from the back of the house. When I reached her, she said, “Where are we staying tonight?” I told her we were going to stay “right here in our own home.” She said she thought so. I walked back toward the kitchen and heard her call again. This time she pointed to a tube of toothpaste and her toothbrush and asked (using hand signals) if she should bring them with her. I told her I thought we could leave those at home. She said, “I thought so.”

When we got in the car, she asked, “Where are we right now?” I told her we were at our house in Knoxville.” Once again, she said, “I thought so.” She may have, but I know that today she has asked that quite a few times. Obviously, she is not sure. As I have said before, she doesn’t show any signs of frustration when she asks. She seems to be adapting well. Something else to be grateful for.

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Yesterday’s Experience with the Sitter

I’ve noted before that Kate has received the sitters quite well. There have only been a couple of times when she seemed hesitant for me to leave. One of those occurred yesterday. She was getting along fine yesterday morning. When the Anita arrived, she didn’t greet her as warmly as usual, but nothing seemed strange. When I said I was getting ready to leave, Kate said, “I want to go with you.” I told her I was going to Rotary and the Y and that she and Anita could go to Panera or stay at home and do whatever they would like. She told Anita she would like to go to Panera.

When I got home, Anita said Kate was resting. She said that Kate didn’t talk much and that she had not tried to push her. I told her that was fine. She doesn’t talk a lot with me. Then Anita told me that Kate didn’t seem herself and suggested that maybe she wasn’t feeling well.

After she left, I went back to the bedroom where Kate was resting. She got right up and was ready to go out. She was perfectly fine, but I can’t help thinking that she was just reacting to not being with me.

Whatever was going on, I feel the need to see what I can do to avoid this again. There are a few things I can think of suggesting to Anita that might help. For example, we have several photo albums in the family room. She could ask Kate to show them to her. I suspect Kate would love that. She could ask Kate about her family or growing up in Texas. Her memory for details is poor, but she has strong, positive feelings about her family, especially her mother. I’ll get her to try that next time.

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Signs of Confusion

Kate’s imagination was active over the weekend. Before we got out of the car for lunch yesterday, she had a look on her face that signaled deep concern. She said, “I just don’t know what to think.” As often happens, she couldn’t explain what had happened. She said something about our daughter, Jesse. I asked if she thought something had happened with Jesse and her husband, Greg. She nodded. I said, “Did you think they were separated?” Again, she nodded. I told her everything was all right, that they had not separated. She said, “I must have imagined it.” Periodically, she has had experiences like this, and she seems to grasp that the origin is in her mind.

As we were leaving the house for dinner last night, she specifically went to our bedroom and turned on the lamp on the table next to here side of the bed. She asked if she should turn on the one on my side. I told her I thought we could leave it off. As we walked through the family room, she asked, “What time are they coming?” I told her we weren’t expecting anyone, that we would have the house to ourselves. She didn’t say anything else, and I didn’t ask.

While at Panera this morning, I received a phone call from Scott Greeley. We arranged for the Greeleys to visit us this Saturday. When we hung up, I told Kate it was Scott and that they would be in Knoxville on Saturday for lunch. She said, “Good. I really like them.” Then she added, “What’s her name?” I told her. Only moments later, she said, “Jan.” I said, “Right.” Then she said, “I know that you know her name; I just wanted to let you know I got it myself without asking you.” She had apparently forgotten that just moments before she had asked me for Jan’s name.

When I got home from Rotary, the Y, and the grocery this afternoon, Kate was ready to get out of the house. As she has done a number of other times recently, she was carrying a night gown, a robe, a pair of pants, and a top. She noticed that I was taking 6 new pairs of socks out of their packages and asked that I give them to her. She did not have her iPad and a cup. I got a cup and then used the Find my iPhone app to locate her iPad. When I returned to the kitchen with the iPad, she was still holding the clothes along with the socks I had just bought. I asked if she were planning to take the clothes with her. She indicated she was. I told her I didn’t think she would need them. She said that would be fine. I suggested we leave them on the love seat in the family room until we returned. She put them on the love seat. As we started for the car, she picked up the robe and brought it with her. It’s sitting in the car right now.

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Reflecting on In-Home Care

Nine months ago this past week, I started in-home care for Kate. It seems like an appropriate time to take a look at how it’s working. Overwhelmingly, I would say that it has worked well. My biggest concern at the start was how Kate would react to my leaving her. I feared that she wouldn’t think she needed anyone to be with her. It turned out to be a non-event. A few minutes before the first sitter arrived, I told her that I was going to the Y and that I had arranged for someone to stay with her. She looked puzzled and asked why. I reminded her (knowing that she couldn’t remember) that I had mentioned feeling uncomfortable leaving her alone when I was gone and that I would feel more comfortable having someone with her. She said, “Okay.” That was it. She greeted the sitter warmly and never acted like there was a problem. I felt much better about leaving.

There have only been a couple of occasions when she seemed to have had any concern, and it was minor. I think that was because she knew I was leaving and expected that she would be going with me. On one of those occasions, she said, “I always like being with you.”

At first, I think she felt as though she may have needed to entertain the person. After a number of visits, I found that if she wanted to lie down and rest, she did just that. She also seems to like the two sitters we have. One comes on Monday, the other Wednesday and Friday. There have been at least four times that a sitter could not come. Each time the agency was prepared to send someone new, but I chose not to introduce a new person. I know that we will have to do that eventually. Right now, I’m not ready. I like having the consistency.

The two people who are with us are not the same people with which we started. The first week or two we had different issues that led to our not having them return. Since then, everything has worked out well. Kate seems to be happy. I think the sitters are also happy. I think they should be. They don’t really have any major responsibilities other than being with Kate while I am gone. They almost always go to Panera for an hour or two of the four hours the sitter is here. I have a gift card for Panera and have told the sitters they may buy something for themselves in addition to whatever Kate wants. I think they have liked that.

If there is any problem at all, I think I may be it. Rationally, I believe having a sitter is the right thing to do. It is good for me to have some time to myself. It is also good for me to get my exercise at the Y even if I am also walking every morning.  I have never fully adjusted to a sitter emotionally. My problem is that I don’t like leaving her with someone else. I like being with her. I am especially mindful that she is changing. It won’t be that long until we may not be getting out as much as we do now. I want to enjoy every moment that is possible. As I say, I know that rationally I am doing the best thing. I have no intention of going back. In time, I am sure that I will accept this emotionally as well.

I have had one surprise. I misinterpreted the “elimination period,” the length of time that we must pay for the services before long-term care insurance kicks in. I always knew that it was 90 days, but I thought that meant 90 calendar days from the start of service. That would have meant the insurance would begin paying on or about December 8 of this past year. When I called the company to initiate their payments, I discovered that the 90 days refers to the number of days of service, that is, the number of days we actually had a sitter. It looks like that will be in late July, a full 7 months later than I thought. I understand now that some policies do have an elimination that is like I expected, but I am sure it is more expensive. The important thing is that I don’t have a policy like that.

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Our Day in Nashville: Part 2, Visiting with Ellen, Kate’s Best Friend

After lunch, we drove to the other side of Nashville to visit Ellen. Three years ago in August, she had a stroke while visiting her daughter who lives in Nashville. We had been with her the night before when she told us that she had finally decided to stay in her home in Knoxville rather than move elsewhere. She had been considering a move for several months. She was in the hospital a while and then in rehab. As soon as her daughter said, we could visit, we went to see her. Since then, we have tried to visit about once a month. Two times she has had other issues to deal with. Those kept us away as long as a couple of months, but we are back on schedule now.

As usual, we had a good visit despite the fact that Ellen has never fully recovered her speech after the stroke. She made progress for a while. Since the first six months to a year, there has been no change. We can only understand 30-40% of what she says. She understands us perfectly which helps. We can ask yes no questions. Then she can nod to indicate if our guesses are on target. That’s a slow process.

This is the second memory care unit she has been in. The first was a unit of her assisted living facility. This facility is totally dedicated to memory care.
For the past few years, I have been sensitive about taking Kate to anyplace that offers memory care. My concern was that she might find this depressing knowing that one day she will be in the same condition as the current residents. There are at least 3 people I have known in memory care that I haven’t visited just for this reason. I have made the visits to Ellen with some reservation but decided to go anyway. I see absolutely no sign that Kate is bothered. As with everything else directly related to Alzheimer’s, I have not discussed this with her.

We were there almost two hours. The first hour we sat with Ellen at the table where she was to have dinner. When they set up for dinner, we decided to stay so that we could spend more time with Ellen. As it turned out, this didn’t work very well. There were three other residents at Ellen’s table. Only one of them, Wally, was verbal, and she was quite a talker. She is 90 and showed signs of dementia but was very communicative. At one point when Ellen picked up her chicken cordon bleu with her hand, Wally told her to put the chicken down and pick it up with a fork. Ellen gave her a dirty look and said something that led me to believe this is not the first time she has said something like this. For the balance of the meal, Wally dominated the conversation. It completely shifted the focus away from Ellen.

While this was going on, Kate tried to engage the other two residents in conversation without any success. One of them does not speak at all. The other has limited speech. Although Kate was actively trying to interact with them, she did not appear to be bothered. If it did, I am sure that she forgot it almost immediately.

I will continue going back on our once a month schedule. The next time I will make sure that we arrive earlier so that we leave before they eat dinner at 4:30. That’s what we have done on previous occasions. That has worked out.

I want to add that Kate still remembers Ellen although she often doesn’t recognize the name when I mention it. One thing she remembers is that the two of them used to go out for lunch every Monday when I was at Rotary. Kate brought that up several times over the course of yesterday’s visit. I’m not sure what else she remembers. I know she doesn’t remember the names of Ellen’s husband or her children. I believe the regular visits we have made help maintain some of her memory for Ellen. It will be interesting to see how well the visits go as her condition and Ellen’s progress.

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Our Day in Nashville: Part 1, Lunch with the Robinsons

Yesterday we made a day trip to Nashville to visit friends. We had lunch with the Robinsons. Our friendship goes back to TCU, and we have visited back and forth between Knoxville and Nashville for almost 47 years. Our children were very young, and we carted the various paraphernalia likes cribs, diapers, and snacks for an overnight stay. As we have aged, we’ve made the trips much simpler. We have lunch out and then go back to the house for conversation before going back home for dinner. Yesterday’s visit was simpler than that. We met the Robinsons for lunch and dessert and then went on to visit Kate’s best friend, Ellen, who now lives in a memory care facility.

Given Kate’s recent changes, I feel it especially important for us to be with old friends as much as possible. I was especially pleased that our visit with Tom and Angie went so well. In an email this morning, Tom said they thought Kate was pretty much the same as she has been during other recent visits. I agreed with him. She was an active participant in our conversation as she was at lunch with the Greens the other day. I continue to be encouraged at how well Kate does in these kind of social situations. I am hopeful this ability will remain with her for a good while.

The Robinsons were already there when we walked into the restaurant. Kate hadn’t remembered we were meeting them and said, “What a nice surprise.” Of course, I should have reminded her as we walked into the restaurant. This is one of those times I had talked about it a number of times including in the car. It just slipped my mind to remind her just before we saw them. It’s a good illustration of the fact that I can often treat her as though she can remember. She is so normal in other respects that I just forget.

I received an email this morning from my former TCU roommate, Bruce Morton. He and Tom and I send multiple emails to one another daily. He asked if Kate remembered the Robinsons. I told him that is a good question and that it involved what it means to know someone. There is no question that she has trouble remembering their names. Even after spending almost two hours with them yesterday, she asked me their names when we got in the car to leave. She had done the same thing on the drive to Nashville.

She greeted them exactly the same way she would have done in years past. I am sure, however, that she would not have been able to remember our past visits together, that they have children, where they live, etc. She recognized them as people that she has known before. It’s an emotional connection that remains even though all of the names and facts associated with our relationship have faded away. It is something that I did not understand when she was first diagnosed nor quite a while after that. I am glad to have discovered this. It has extended our ability to get together with friends much longer than I would have predicted 7 ½ years ago.

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A Thought on Caregiving

At lunch with the Greens the other day, Angela told me a story of how a friend who was a caregiver for his aunt dealt with a situation all caregivers for people with dementia (PWD) face, what to do when your loved one keeps asking the same question over and over. She said he made signs that he could hold up and show his aunt. I said, “That sounds like something done for the convenience of the caregiver and not the PWD.” She went on to explain that she had heard that having a visual helps the PWD to remember.

Having reflected on this a bit, this approach misses something important. From my perspective, one of my pleasures is being able to help Kate with something that she either can’t do or finds difficult or inconvenient to do. Every time she asks me someone’s name, where we are, or anything else she has forgotten, she gives me an opportunity to do something for her.

I believe one of my greatest privileges is to walk with Kate through these last chapters of her life. I intend to keep answering her questions and to do it happily. These are things she wants to know, and I am glad to tell her. It will be sad day when she no longer asks me questions.