| A real-time account of Dementia Caregiving

June 12, 2018June 12, 2018

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.

June 11, 2018

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.

June 11, 2018June 11, 2018

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.

June 10, 2018

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.

June 10, 2018June 11, 2018

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.

June 9, 2018

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.

June 9, 2018

At Lunch Yesterday

Kate asked, “What’s my name?” I told her. She didn’t ask any follow up questions. A little while later I mentioned that we would be going out for pizza last night and told her the name of the restaurant. She said, “You’re my brain.” Then she laughed and said, “And, I really mean it.”

These are not just examples of her dependence on me but also recognition of it. In her hour-long conversation with her church friend yesterday, I overheard her telling the friend how much she relies on me. I am always encouraged when I see signs that she can still accurately interpret what is happening around her. I don’t mean to say that her awareness extends to a lot of things, but I take satisfaction in her ability to read the social situations. That’s good.

June 8, 2018

The symptoms of Alzheimer’s are intertwined with many good times.

I couldn’t have understood seven years ago how well Kate and I would be able to get along this far into her Alzheimer’s. That isn’t because of any lessening of the changes the disease is bringing into our lives. It’s because I didn’t fully grasp that Alzheimer’s doesn’t affect every aspect of a person’s life until very late in the disease. Discovering this has been an unanticipated blessing.

My own lack of understanding is not unique. What most of us think about when we hear of a person with dementia is the end state. There is a image of people we have seen in nursing homes who have lost virtually all of their abilities. For most people with dementia there is plenty in life that can be appreciated even when memory is gone.

For us, yesterday was a good example of that. Kate was able to enjoy conversations with friends and the pleasure of music. An observer would never have suspected that she didn’t know where she was (either the city or the restaurant), what day it was, the time, the name of her favorite entrée she had, or the names of the people with whom she conversed. Yet, she was happy, and I was just as happy.

June 8, 2018

Music Speaks Again

As expected, opera night at Casa Bella was outstanding. The two singers were unusually good. I don’t mean to take away from the singers we normally have. They are graduate students from the music school at UT. Last night, the soprano and the baritone have sung with opera companies in Europe. As you might expect, they were truly outstanding. The crowd, including Kate and me, loved them.

It had been three weeks since we had been together with the couple we sit with regularly. It was good to see them. Two other people sat with us. We had known each of them from other places around town, so it was also a nice social occasion as well. We also saw several other people we know from other musical circles.

Once again, the power of music spoke loudly. With all the changes that Kate is experiencing lately, music still has great impact. I am optimistic that it will be with us for a good while to come.