Losing Another Friend With Dementia

Over the course of the past few years, I have connected with several people whose spouses have had dementia. One of those was my former dentist whose wife was in the last stages of the illness when we first got together. He had in-home care for her round the clock. About a year after our first contact, he died of cancer. She died earlier this year following a year in a memory unit of a continuing care community.

Another man was a neighbor whose wife was between the middle and later stages. He cared for her at home until she experienced serious problems with anger. Then he had to put her in a memory care unit of a local facility. She died over a year ago.

One other person was someone with whom I had served as a volunteer in three different not-for-profit organizations. After his retirement, he and his wife moved to the coast of South Carolina. His wife had also been an acquaintance of Kate’s. Her dementia had already been diagnosed at the time of their move. I last saw them together in August 2016. She seemed to be getting along pretty well although I knew from her husband that she had had a variety of problems, both health and anger. A month after I saw them, she started a downward spiral that ended in early January. He was able to keep her at home for all but a period of a month or six weeks that occurred about a year before she died. He had help from his daughter and an agency that provided in-home care during the day.

Yesterday morning, I received a text from Nancy Hardwick telling me that Charlie, a former roommate at TCU, had passed away early that morning. Charlie had enjoyed attending an adult day care center for over a year. He died peacefully at home. I don’t believe Nancy had any help until hospice was brought in about a week ago.

That leaves me with only two other acquaintances in my shoes. One is a former member of my Rotary club and a neighbor, We periodically exchange email messages but haven’t gotten together because he can’t get away from the house. His wife won’t accept a caregiver, and he doesn’t want to leave her alone. I need to give him a call. He might like to have a little contact. I sense that he is substantially more isolated than I am.

The other is a member of our church. Kate and I see him and his wife at one of the restaurants we frequent regularly. I have talked with him two or three times on the phone. For a long time, he took his wife to work with him. He owns a large company and is retired but goes into the office daily. He has brought in a sitter for his wife within the last six months or so. I have the impression that he doesn’t feel the need or desire to establish any kind of regular communication. His wife is a little further along that Kate. The interesting thing to me is that our situations are very similar. His experience with her is very much like that of Kate’s and mine.

The deaths of these four people sensitized me to the fact that we are one day going to face this same thing. Even though Kate lives with little or no memory, I still feel her passing is years away. I read some caregiver’s forum messages that welcome death. At this point, we still enjoy life. I wouldn’t want it to end now. There is simply too much to live for.

Taking Stock: How am I feeling?

I tend to think that how I am doing/feeling comes through my posts without my explicitly speaking to that point. Once in a while, however, I feel the need to address the issue head on. This is one of those times.

Considering everything, I still believe I am doing well. Although I experience the many frustrations that accompany this illness, I don’t feel worn down in anyway. The most significant emotion I feel is sadness. I don’t see how anyone can watch his spouse gradually lose all (and I mean all) of her abilities to function. Recently, as I have become increasingly reluctant to leave Kate alone, I have felt torn about engaging someone to be with her when I need to go out. For a long time I have wondered how I would know when that time was right. As it turns out, the kinds of changes that I have described in my recent posts have led me to feel now is the time. Intellectually, I am not having a problem with that. Emotionally, it is more difficult to accept.

Two related issues account for this feeling. One is how I can introduce this to Kate without making her feel bad. From everything she says, I believe she doesn’t realize just how far she is into this journey. I certainly don’t think she feels the need for someone to stay with her. On the other hand, as I have noted earlier, she also seems more accepting of whatever I plan for her. My explanation is that she is so tuned out of things going on around her that she doesn’t really understand and just accepts what happens. I was quite concerned about how she would respond to the nurse who came to our house yesterday. Even though I told her that the nurse was coming in connection with her Alzheimer’s diagnosis and the nurse asked a lot of questions she would not be used to answering, she never got suspicious or upset about why the nurse had come or what was to follow. She just seems to have lost her ability to process these events. That is definitely true about other things.

Now that the nurse’s interview is over, I wonder how she will respond to her first meeting with a sitter this coming Wednesday. I am generally optimistic because of yesterday’s experience with the nurse and also her previous meeting about 10 days ago with the social worker from the agency that I have engaged to provide a sitter. At the same time, I am still a bit uneasy and will be glad to have this first encounter behind us.

The second issue that concerns me is the implications of bringing in a sitter for me. It has now been 6 ½ years since Kate’s diagnosis. I have devoted myself to her throughout that time. This is something I was glad to do. We have both derived pleasure from the many things we have done. Throughout this time, I have gradually had to make changes in my own life to meet her wants and needs; however, I have wanted to do this and have never felt that I have sacrificed my life for hers.

Introducing a sitter is a sign of a real change in our relationship. Whereas she has depended on me in the past, she will come to increasingly depend on others. This represents a loss to me not just in my no longer being able to do as many things for her but also the beginning of the loss of our normal marital relationship. Life together is never going to be the same again.

Of course, the changes started long ago even before her diagnosis. Right now, however, I see a clearer departure from the earlier days. We are now entering a period that is what most people think of when they hear the word Alzheimer’s. I have heard and read about the caregivers of Alzheimer’s patients grieving the loss of a spouse or other loved one before their actual death. That is what this feels like to me. This feeling is not brand new. I have always loved music and have found it to be especially comforting since her diagnosis. I have never been one to pay much attention to the lyrics of songs, but the lyrics of some songs have caught my attention and have had a different meaning than the songs themselves then intended by the writer. I can think of two examples. The first is “If I Should Lose My Way, Please Wait for Me.” I can’t hear this without thinking of Kate’s literally and figuratively losing her way in the depths of Alzheimer’s. Recently, I heard another one called “Losing You.” The phrase “I’ll never get over losing you” spoke to me in way that I would never have noticed before.

I don’t mean to exaggerate this feeling of sadness, but I wouldn’t be honest if I didn’t acknowledge it. It seems to characterize my response to Kate’s disease than what I hear from many other caregivers. That is a major reason I say that we have been very fortunate. We still have not had to endure some of the worst aspects of Alzheimer’s. It makes me much more sympathetic for those who do.

How am I Feeling?

Observing Kate’s decline over the past few months and finally taking steps to get in-home care for her has left me feeling a bit sad. It also makes me think about what other caregivers have said about “grieving” for their loved one long before their death. I can see (feel) exactly what they mean. Recognizing the need for in-home care is not really the beginning. For much of the time since her diagnosis, I have come to understand that our lives together have been permanently changed. As all my entries in this journal convey, that hasn’t meant that we have not enjoyed life. I still maintain that these years have been the best of our marriage. That is because we have worked hard to make the most of the changes. We have lived to make each moment special. The reality is that our lives have changed continuously since the first signs of her illness 11 years ago.

Reaching the point of in-home care is a significant one symbolically. It signals a time when the severity of her illness requires more help. Although we will begin with minimal help, that is our first step toward full-time care. In the meantime, I plan to continue doing as much as we can socially. We will continue to go to Panera each morning. We will continue lunch with local friends. We will also visit our friends in Nashville. This Sunday we are going to Asheville for a show at one of their local theaters. Once again, we will stay at the Haywood Park Hotel, our home in Asheville since they opened. We have season tickets to the Bijou in Knoxville. We will try the Live in HD at The Met productions. I am a little guarded about those. We walked out at the first intermission of the last one.

That said, I can’t forget that we are approaching that chapter of Kate’s illness that I have not wanted to face. I am at a weak point emotionally, but I know that we will be able to cope with what lies ahead even if it is through lenses covered with tears.

Travel Report Chautauqua 2017

Today was our last day at Chautauqua. It was probably our last time here together. That thought has saddened me deeply today. At various times during the day (sitting on the porch for breakfast and checking email, walking the brick walk to and from the Hall of Philosophy, having lunch at La Familia and dinner at the Afterwards Cafe) I have thought, “This is the last time we will experience this together.”

Even with the sadness, I believe that I made the right decision to come this year and to leave after only one week. Today was another good day for us, but Kate was worn out last night. She was in bed at or before 9:00 last night and didn’t get up until about 11:00 this morning. Not only that but between lunch and the 2:00 lecture, she went back to bed. I had to get her up to attend the lecture. She would have preferred staying in bed but got up anyway, something that she has been doing for the past 6-12 months. Prior to that, it was very difficult to get her up. She gets up much more quickly now.

Returning from the 2:00 lecture at the Hall of Philosophy, she walked even more slowly than usual. We stopped by the apartment for a short time and then went to see the play “Noises Off.” Again, she walked very slowly to and from the play. She seemed to enjoy the play despite the fact that it is a farce. She generally doesn’t like that type of humor. This is something we have seen three other times. She enjoyed it each of those times.

It is almost impossible for me to imagine coming back with her if she declines as much in the upcoming year as this past year. There would be problems on multiple fronts. Just the travel itself would be trying. I know that it would be difficult for her to enjoy herself once we are on the grounds. That would affect my enjoyment as well. I would need to have help to take care of her. That can be arranged here. My contact at the Chautauqua Foundation has indicated that she could help in that regard. At the moment, I feel that it would be best not to come at all. It may be that it would work out for me during the following year although everything depends on Kate. It is simply too early to be planning anything too specific.

Still Have Good Times

Yesterday and today I sent an update to our children as well as a couple of close friends. It was a more negative update than I have written prior to this time. I feel a need to note that we can still have good moments. It has been a cold day. I fixed a fire this morning, and we sat in front of the fireplace until lunch. I was working on my computer and she on her iPad. Then we went to Applebee’s for lunch. Our favorite server took our order. We always chat a little with her. Other employees are also familiar with us and greeted us warmly when we entered. We enjoyed our meals and had a very pleasant time together. After eating we dropped by Walgreen’s to get a few things,

I got an email reply from a friend whose wife also has AD. He suggested that I look into Kate’s medications and make an appointment with a neurologist. As I have done for the last 3 doctor’s appointments, I plan to write an update for Dr. Reasoner, Kate’s doctor. In addition to giving her an update, I plan to address the medications and the neurologist. In particular, I have wondered about the need for Kate to continue with her Prempro that is supposed to address her hot flashes.

I have never felt the need for a neurologist before. The problems we have encountered have appeared to be the expected ones. We have been able to live fulfilling lives. Kate’s current status is causing me to reconsider. I am aware that Sharon Billings regularly used a neurologist. Virginia and Ken also use a neurologist. I still am not convinced that this is all that important, but I would hate to discover that I could have prevented a problem by seeing one. One of the reasons that I have not wanted to pursue one is that Kate does not like to focus on her illness. This sounds like devoting more attention that she would like.

Back Home One Week

Now that we have been home from our cruise a full week, I feel even more strongly that it is easier for me to take care of Kate here than on a big trip like our trip to Switzerland last May or the cruise we just finished. This isn’t because her symptoms are any less. It is because neither of us has to think about as many deadlines. In addition, I think the fact that we are in our own home where there is a certain degree of comfort means less stress for both of us. In some respects this seems obvious. After all at any point in our lives, we find that we have more adjustment to changes while we travel as opposed to staying at home. On the other hand, I had thought that being on a cruise would be easier than it was because we (I) knew (1) the meals were taken care of and (2) that there were opportunities for many diversions to address Kate’s boredom and (3) the ship offered attractive places for us to relax. All of that is true, but her Alzheimer’s has reached the point at which none of these things seems to have great appeal. I have not contacted the cruise line to cancel our trip in May, but I intend to do so this coming week.

Here are a couple of experiences today that illustrate where we are at this point. Each Saturday morning I work on my Sunday school lesson. After taking my morning walk and checking email, I prepared myself to take care of my lesson. As I started, I heard her call for me. I went to the back of the house. She was heading my way dressed in sweat pants that a church friend had given to me because they the legs were too long for him. She also had a sweat shirt on over another shirt. This is the kind of attire that she typically wears when she is outside; so I made the assumption that she was on her way to work in the yard. Then she asked, “Where are we going?” I asked her if she wanted to go someplace. She said she wanted to go to Panera. I told her that would be fine and asked if she wanted to change clothes. She said, “No.” I told her I would need a moment to get ready. She said that would be fine and went outside. When I was ready (in a few minutes), I went outside to ask if she wanted to take her computer as well as her iPad. She said she would; so I went back in the house and got both for her. I also got cups for both of us.

After we had been at Panera for about 10-15 minutes, she said she was ready to go. She hadn’t even gotten her computer and/or iPad out of the case. I told her that would be fine, and we went back home where she immediately started working in the yard. At 12:30, I went out to get her for lunch. She was surprised at the time and said she would be right in. When she hadn’t come in by 12:50, I looked out the kitchen window and saw her sitting down on the ground working in the flower bed along the drive way. I went out again. It appeared that she never remembered I had been out before because she was surprised again at the time of day. She came in 10 minutes later.

Turning a Corner With a Little Trepidation

Earlier I posted emails that followed our visit to the Robinsons last Wednesday. In those I speculated that Kate seemed to have been worn out after the visit. During the afternoon, she closed her eyes and rested in a chair at the Robinsons while we were visiting. After we got home, she went to bed rather quickly and expressed only minimal interest in her new iPad that had arrived in the mail that day.

The next day things everything was pretty normal. For quite some time she has seemed to require more rest than she used to. Then on Saturday after we returned home from seeing a movie and getting ice cream, she got right into bed in her office. That would have been around 3:30. She remained in bed the rest of the afternoon. I had made reservations for dinner at 6:45. She had been fine with that. At 5:30 or so, I checked on her, and she said she didn’t think she wanted to go. We talked a minute, and she decided to go ahead with our plans. A few minutes after 6:00, she was still in bed. I asked if she still wanted to go. She indicated that she did. When she had not made a move to get out of bed by 6:15, she said she thought I should cancel the reservations which I did. Then I went to Panera for a sandwich and salad. Before leaving, I turned on an ETV fund raiser that featured music from the 50s and 60s. When I returned from dinner, she was up and smiling. She quickly told me about the wonderful program on TV. It was the one I had turned on for her before leaving. She was in good spirits from then on.

She got into bed early that night and told me she was waiting for me. I took my shower and then got into bed with her. She seemed especially glad to see me. She always does. She likes to be cuddled before going to sleep. This time, however, I sensed a deeper meaning.

Then yesterday after we had gotten home from Sunday school and lunch, (We did not go to church at her request.) she again went to bed and remained there for the afternoon. I was watching the final round of the PGA championship; so I didn’t rush her. Finally, around 6:30 I asked if she wanted to go out for something to eat. She said she did. When we got home, she again got into bed after changing for the night. Again, she indicated she would be waiting for me. When I got into bed and held her, she said (as she has done a number of other times), “This is the best part of the day.”

She still does not want to talk about how she is feeling, but it seems like she is seeing herself drifting into a new stage, and it concerns her. It seems like she is telling me with her behavior, “Richard, I am drifting away. I love you.” In the past I have wondered if she would ever reach a point that she would say something like this. I believe I would if I were in her position. Her way, however, is to express her appreciation without ever specifically and literally connecting it to her Alzheimer’s. She does say how much I do for her, that she couldn’t live without me, is so glad she has me, how much she loves me, etc.

I am beginning to think that this is the beginning of that stage of AD that we all imagine when the person who has it no longer connects with the world around her, doesn’t put up a front, and doesn’t even recognize her condition. Although Kate and I are quick to count our blessings, I can’t deny how much it hurts to watch her drift away like this. It also makes me very doubtful that our cruise next May and the trip to Chautauqua next June will come about. The cruise is not that big a deal, but Chautauqua has been such a special place for us that I don’t want to let that go easily.

Thoughts Niagara-on-the-Lake and Chautauqua

As we come to the end of our week at Chautauqua, we are a bit sad to leave. I don’t recall ever feeling any other way. This is clearly the most special place for us. Despite losing Kate three times, I have made arrangements to come back next year. This time for two weeks. I am influenced by several factors. First, this year’s visit has gone well. Second, Roger Rosenblatt will once again host a week with his “friends.” This is Kate’s favorite week. We have been here twice before when he has hosted this week. Third, lodging space is going fast, and I found a very convenient place a short distance from the Amp and across the street from the Brick Walk Café. In addition, it is on the first floor. Finally, I am able to purchase trip insurance that would I cover the cost of the two weeks if we are unable to make it.

Chautauqua will be our last holdout. I do not plan to cease coming until it really is impossible to do so. One of the things that will influence me in that decision is how to handle trips to the restrooms. That would be difficult in airports when she is unable to take care of herself. The same would be on the grounds here at Chautauqua.

Right now I can’t predict what she will be like next summer or in May when we are booked for a cruise from Rome to Amsterdam. At this point, I have found the risks involved in planning for such things are minimal. I suspect I will have a much better sense by the end of February when I have to make my next decision about the cruise. I can cancel without any financial cost before that time.

All is well

I realize that I write most of my entries when something of significance occurs (usually something I feel is not so good). Right now I feel that Kate seems to be on a plateau. She is not any better than she was before, but she seems to be content. We continue to enjoy doing things and enjoy each other’s company.

Today she has been outside since we returned from our Y breakfast this morning. We also stopped at Lowe’s along the way. It must have been 9:45 when we returned. I had a board luncheon at noon; so she made do with a leftover sandwich and yogurt for her lunch. I suspect she only came in to get something to eat and/or drink and went back outside. It is now 3:50 and I got home around 1:45. She has been outside the whole time. At least she enjoys what she is doing.

The most troublesome symptom lately has been her boredom around the house. She still is able to do only jigsaw puzzles, work on the computer (photos), and the yard. She has also been doing some organizing of her clothes recently. The rooms don’t look as much in disarray as they have in the past.

She still gets irritated with me when we are going places. That is because I try to keep her posted on how much time we have. When I am able, I just let her take as much time as she needs. That works out well. I am coming to the end of my board responsibility with the foundation at the end of September. That will give me more free time. We should have fewer problems in the future.

Because of her boredom, I have been more diligent in trying to keep her entertained. I am even beginning to think about another trip, a cruise from Rome to Amsterdam next May. I am in a quandary trying to assess the risk of doing so. If her condition next May is the way it is now, I wouldn’t hesitate. I just don’t know. I am definitely leaning toward taking a chance and buying the insurance if it will cover pre-existing conditions.

Taking Stock Two Weeks After Travel

Since our return from New York, I have been unusually tired. This is something I have rarely felt before. On several occasions upon waking, I felt as though I would like to remain in bed. I must also say that I have not been sleeping as well since our return. Surely this is part of the reason. I have also wondered if I am not having a general let down after planning and anticipating our two big trips (Switzerland and NYC) that occurred so close together. All along I have looked upon both of them as the last such trips of this nature that we are likely to make. Since returning home, I have done some reflecting on this and am leaving open the possibility of at least one other trip overseas. I still think the likelihood is slim. I am certainly not going to do anything sooner than the next 6-8 months. By that time, Kate’s condition may have deteriorated to the point that it is very clear that we can’t do it. On the other hand, it may be possible to either attempt a cruise in which we don’t do the excursions but simply enjoy life on board and on shore around the port area. Another possibility would be to go to a place like Santa Fe and stay there for a week or so. Right now I am not going to plan anything. I intend to assess how well we get along at Chautauqua. I suspect I will have sufficient doubts about going back in 2016 that I won’t make plans a year in advance.