June, 2018 | - Part 4

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.

June 7, 2018

Little Things

As we were getting our things together to leave for Panera this morning, I told Kate that I would get her iPad if she would get her cup. This is a fairly routine moment each day. The exception is when she is in a hurry. Then she goes directly to the car and waits for me to get everything. For the second day in a row, she couldn’t think where the cups are located. I don’t every recall her having that experience before. At various times during the day, she frequently goes to the cabinet and gets a cup. It’s a little thing but another marker in her journey.

When we pulled out of the driveway, she said, “What is the name of this street?” That is the first time she has asked that. Based on other things she has forgotten, I suspect she has had trouble remembering the name of our street for quite a while. Then she waved to the neighbors’ houses and said, “Bye, whoever you are.” That is a very common thing for her to do. She hasn’t remember their names for a long time. I find it cute the way the way she says it. She intends to be funny. She doesn’t think either of us knows their names. She sometimes says, “Bye, even if we don’t know your names.”

June 7, 2018June 8, 2018

A Surprise, But a Good One

Kate and I were sitting in the family room before leaving for lunch. As usual, music was playing on my audio system. This time it was a John Galway album. She said, “I love that song.” I said, “I do too, but I can’t remember the name.” She said, “Beauty and the Beast.” I said, “You’re right. I’m surprised you could remember that.” She laughed and said, “I am too.”

It has been many years since she saw the musical, and this is not an album I have played a lot. I am amazed she could recall the name. As she sometimes says, “Don’t count me out yet.”

It’s another reminder of the power of music.