Reflections on Having a Sitter

It is hard for me to believe, but it has been four months since  introducing a sitter into our lives. I thought about it a long time before making the decision. Then I agonized over the best way to present this to Kate. As it turned out, my worries were unwarranted. Kate accepted the sitter from the first day. She has always been very welcoming and has made comments about how sharp they are, something she says about most people she meets. It has been a relief to see how she responds each time the sitter arrives. Today, for example, I was in the kitchen when the sitter drove into the garage. We chatted briefly. Then I took her back to our bedroom where Kate was working on her iPad. As we entered, I said, “Mary is here, and I am off to the Y. You can do whatever you like. If you wanted you could go to Panera.” At that, Kate’s eyes brightened. She had a big smile on her face as she looked at Mary and said, “We could go to Panera.” So once again, I left without any worries about how she would get along.

There is another aspect to having a sitter that I hadn’t fully anticipated. (I should make it clear that we have two different sitters. One comes every Monday. The other comes Wednesdays and Fridays.)  It still bothers me to leave her. As I suggested in a post two or three weeks ago, I was motivated to engage a sitter to enable me to continue going to the Y, Rotary, attend any meetings that I might have, and take care of any routine errands. I find that sometimes four hours seems very short. That is especially true when I go to the Y and Rotary on Monday. That leaves me only about thirty to forty-five minutes for other things. On Wednesdays, I meet my friend, Mark, for coffee and conversation. He is helping me transfer this journal to a blog. If we meet for an hour, I usually have forty-five minutes before I have to be home. On Friday, however, I don’t have any other standing obligations except the Y. That leaves me with almost two hours. I put that time to good use. I make new entries like this one for my journal and also review older entries to upload to my blog. (I’ll say more about that in a separate post.) While I make good use of the time, I feel the slightest tinge of guilt that I have left Kate in the hands of a sitter when I could be doing this with her at home, Panera, or Barnes & Noble.

At first, I thought I would get over this feeling rather quickly. Now that four months have passed, it hasn’t gone away. In time, I know that it will. In the meantime, I am following the guidance of my less emotional side and taking advantage of some private time that I would not ordinarily have.

I know that many people caring for a loved one with dementia would love to get a break. I would as well if it were not for the fact that Kate has been relatively easy to care for. In that respect, she is very much like my mother who had an undiagnosed form of dementia. As her illness progressed, she never became agitated or aggressive or displayed any of the kinds of behaviors that try the patience of many caregivers. The same was true for Kate’s mother who had vascular dementia. I am not ready to say that Kate will never express any of these problems, but she hasn’t so far.

As Kate declines, I am prepared to increase the amount of time the sitter is here. It is comforting to know that our long term care insurance provides up to 13 hours a day should we need it. That is well below the 12 hours a week that a sitter is with her now. I don’t anticipate increasing that anytime soon. I realize, however, that circumstances can change quickly. When the need arises, I will certainly take advantage of it.

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.

Acknowledging the Impact of Dependence

I envy those who seem to be able to recall the exact words of conversations. It is just about impossible for me. In this journal, I have tried to capture exact quote where I can. In many case, I have retained the spirit of the words that Kate and I have spoken, but they aren’t always the same exact words we have uttered. The notable exception is the mention of phrases that are common place like “Let’s not talk about it” or “Tell me tomorrow.” All of this is to say that we just had an exchange that I wish I could capture in the literal words in which they were spoken. Here’s what happened.

As we walked out of Panera to return home, the sun was shining brightly. Kate put her hand up to protect her eyes. I said, “This is a good day for sunglasses.” Then I remembered that she had lost the two pair of sunglasses I had bought her recently. As it turned out, I found one hanging on a shrub the other day. After returning it to her, one of the lenses fell out. I told Kate I would have to see about getting her new ones.

When we got in the car, she said, “If I had a car, I could get my own.” Then she mentioned other things she could do if she had a car. I told her I knew that she missed having a car. We exchanged a few comments about my willingness to take her places. Then she said, “How would you feel if you were the one without a car, and I had to take you everywhere.?” I told her I wouldn’t like and would feel dependent. As I continued to talk, she said, “I’m not listening.” It wasn’t mean-spirited, but I knew it was clear that she wanted me to stop.

What I think is significant is that Kate does not talk much at all about how she is feeling. Much of what I know about her feelings I pick up from observation. This particular conversation is an indication of her continued struggle to hold on to her independence. This goes far beyond having a car, but it seems like the car is an obvious symbol of her dependence. I should not be surprised at this. I do recognize that having the freedom that a car provides is very important for many of us who are aging.

Having a Sitter is Working

I am writing this post while we are at Panera and am going to relate an incident that just occurred before going on with the topic of the day. A few minutes ago, I was talking to a couple we see her almost every day. They were leaving, and when we said our goodbyes, I turned around and bumped the table at which Kate and I are sitting. As I have noted before, one of Kate’s symptoms is reacting strongly to noises, bumps when we are driving, and other surprises. When I bumped the table, she gave me a dirty look and said, “You always do that.” I always take this humorously since she says this occasionally, but it never relates to a specific thing that I do on a repeated basis. One reason I am able to relate to it humorously is that the dirty look she gives me is not a mean-spirited one. It seems to be more of her effort to respond in a kind way to something that has startled her.

Pardon that diversion, it was just an event that occurred as I was starting this post about the sitter situation. As the heading suggests, things continue to go well. We continue to have just two sitters, one who comes on Monday (Mary) and another who comes on Wednesday and Friday (Anita). Kate likes both of them. I still cannot detect any hesitation or reservation about their being here. In fact, one of the things she likes is their being able to take her to Panera while I am gone. That is a relief for me as I had been concerned about Kate’s having a 4-hour block of time that was all at home with someone who is still a bit of a stranger.

Kate conveys her comfort with the sitter in several different ways. First of all, she is very welcoming to the sitter when she arrives. She always has a bright smile on her face indicating that she is glad to see her. Second, she sometimes says things when I am present with the her and the sitter before leaving. For example, this past Friday as I was driving out of the driveway, I waved to her and Mary and said that I was headed to the Y. Kate waved back and said, “I’m in good hands.” Yesterday before leaving, I handed Anita the Panera card and said they might want to go to Panera. Kate responded quickly. She put her hand on Anita’s shoulder and said enthusiastically, “We want to go to Panera, don’t we.”

Yesterday, I returned home just a few minutes before the end of the 4-hour period the sitter is here. I found that Kate and Anita were not home. I figured they were at Panera. They didn’t get back until almost fifteen minutes later which would have been after Anita’s shift was over. I am impressed with Anita. One of the first things she said to me was that she had clocked out at 4:00. She was reassuring me that I wasn’t going to be billed for her going beyond the time. After Anita left, Kate mentioned how sharp she is, something that she says about most people she meets. It’s an indication of her liking the person and also a sign that understanding things going on around is such a challenge that she is impressed when she sees other handling things with ease. As you can imagine, I am quite satisfied with how things are going with the sitter.

Leaving Texas

In the rental car center at the airport in Dallas, Kate asked me, “Where are we?” I said, “The Dallas airport in Texas.” She said sadly, I don’t wanna leave Texas.” I said, “But, we’ve had a good time” and gave her a hug. And she doesn’t realize she may not be back.   

Another Successful Day

2017-10-20 (9:29 pm)

In my previous post, I indicated my optimism that today would be another good day for Kate. I am happy to report that I was right. The main event was a lunch with four childhood friends of Kate’s. A couple of month’s ago, I had spoken with one of them, Laura Williams, about our planning to attend homecoming this year. In that conversation, Laura asked if there was anything she could do for Kate. I mentioned the possibility of getting several other old friends together for lunch. She said she would love to arrange that. At the time we were thinking about their going out to lunch someplace. When it came close to the time of our trip, Laura told me that another of her friends wanted to host them at her house. She had done that once before several years ago.

Laura chose two other friends who had also been close to Kate growing up. We talked about an appropriate number. I said having five including Kate was ideal. I tried to prepare Kate for this lunch by mentioning it to her a number of times over the past few weeks including the names of each of the four friends who would be there. I was not at all surprised when she could not remember either who the friends were or that we were even making the trip home.

This morning she seemed particularly concerned about getting their names correct. Several times she asked me to tell her the names again. This always came after my mentioning the lunch she was going to. Without these prompts, I don’t believe she would have even remembered that she was going to lunch with anyone.

As we were driving to lunch, she kept rehearsing the names of her four friends. I don’t recall that she ever got all four of them. Sometimes she struggled to get one. I told her I didn’t think she needed to worry about the names as she would remember the people when she saw them, and she wouldn’t have to call them by name. Of course, that didn’t stop her from trying.

I thought it might be good to remind her of our children and grandchildren. That led to a shortened version of the same kind of rehearsal of their names. It is only in moments like this that I really have evidence of how poor her memory has become. In much of our ordinary conversation, she is not required to use specific names or places etc. It is times like these when I am saddened. Other times I tend to think she is doing better than she really is.

I knew Kate’s time with her friends would go well the moment we arrived. All four of them greeted her warmly, and they immediately started getting updates from everyone. While Kate was at her lunch, I picked up a former professor and mentor for lunch.

When I returned to pick up Kate, they all told me what a wonderful time they had had. Two people specifically thanked me for suggesting this opportunity. I was touched by the reception Kate received as well as the joy on her face.

The hostess, Linda Turner, told me that an old friend, Marjorie Eggleston, lived nearby and would love to see us if we had time. Marjorie is now 93 and in a wheel chair, but her mind is sharp. She and I often spent some time together chatting at various family celebrations. We thought of ourselves as buddies at that time. It was good to see that we still feel the same after all these years. Kate was equally thrilled to see Marjorie as her parents had been close friends of Marjorie’s husbands parents. They had been like an aunt and uncle to Kate.

As thrilled as she was to see Marjorie, Kate was also confused. She kept thinking that Marjorie was her husband’s mother whom she thought of as an aunt.

We ended the day with a reunion dinner at TCU. There were very few people there whom we knew, but it was nice to see them.

It turned out to have been as nice a day as I had hoped.

Lunch with Another Friend and Then to Fort Worth

First, an aside. Four years ago today, my dad celebrated his 100th birthday. He was in rare form that day. He entertained the crowd of 94 with his reflections on life in in youth and comments about the people and changes he had seen. Two days later, I received a call at 6:30 a.m. telling me that they were taking him to the emergency room. He died exactly two weeks later. He left us in style. I never feel sad about his death. He lived life to the fullest and retained his sense of humor to the very end. To me he was a model of optimism and adaptability. Although he suffered hardships at various times in his life, especially as a teenager when his dad left his mother and him for another woman, he always made the most “of the hand he was dealt.”

Now a comment or two on our second full day in Texas. Although we had had a full day yesterday, Kate was up early this morning. I had gotten up an hour or more before she did and brought scrambled eggs and sausage to the room for me as well as a couple of muffins, yogurt, and orange juice for her. After she had dressed, she was ready to go just like she is when we are at home. I suggested we walk over to Starbucks which we had done yesterday. We were there about an hour before returning to the room for a break. Then we headed to meet another childhood friend of Kate’s, Meg Wright.

Unfortunately, I had given Meg the wrong location of the restaurant where we were to meet. Thus, we got together a little later than I had intended. That did not, however, diminish the fun that Kate and Meg had before, during, and after our meal. When it was time for us to leave, Meg and Kate hugged each other. Tears welled up in my eyes as I thought that this may be the last time these two see each other.

Once again, Kate has shown some confusion over a number of things. This morning she got up and went to bathroom while I was in the other room. She walked out of the bedroom, and I asked if I could help her. She asked me where the bed was. She was standing only a few feet from it. I pointed to it and said, “Right there.” She turned around and went back to bed. A little later, she got up again and asked me where the bathroom was.

While we were waiting for Meg, she asked me several times who it was we were waiting for. Several times, I also mentioned our grandson, Brian. Each time she asked me who is parents were. I told her he is our son and daughter-in-law’s son. I’m not sure if she ever got that straight. I think a lot of information is being thrown at her, and she is in overload.

The End of our First Day in Texas

2017-10-18 (10:01 pm)

Late this afternoon we met our friends Nancy and Charlie Hardwick. Kate had known Nancy in junior high and high school. Charlie and I had been roommates at TCU during our sophomore year. We have visited them a number of times over the years when we were in Denton where Nancy has lived for more than 28 years. This is a second marriage for both of them. Charlie was diagnosed with dementia more than five years ago. Nancy had told his friends about him several months before our 50th class reunion. That means that he and Kate were diagnosed about the same time. Either he was diagnosed later than Kate or the progression of his illness has been more rapid as he is further along on his journey. In fact, I got a text from Nancy before we met saying that Charlie would not remember us.

We met at a restaurant near their house. When we walked in, Nancy told us that when she mentioned that they were going to meet us for dinner, Charlie said, “You mean Kate Franklin?” At least he remembered her name. As we got out of the car, Kate said, “You’re going to have to do all the talking for me.” That turned out not to be true at all.

We had a delightful time with them. We simply picked up where we had left off when we last saw them two years ago. We took pictures and reminisced about our college days and exchanged information about the college friends with whom we had kept up. I believe all four of us were disappointed that we might not have this experience again. I know that Charlie and Kate will not have thought that, but Nancy and I did.

As we walked to the car, Kate said, “Were they just passing through town?” I said, “No, they live here.” She said, “Where are we?” I told her we were in Dallas (again). Despite these moments of confusion, this was one terrific day. I am sorry it is over but know there is more to come.

Emotional Moments in Denton

Kate’s cousin, Sharon, picked us up at our hotel for lunch and a couple of stops afterward that provided Kate with some very special emotional moments. First, we went to lunch where we had time for lots of reminiscing about many happy family times. Sharon is only a year or so younger than Kate, and her memory is fully in tack. She remembers with some details stories of individual family members and especially the family Christmas traditions. She told us about the three times that the entire family gathered together in three different homes of family members. They began with the exchange of presents about 10:00 at one house. Everyone dispersed to their own home after that and came back together in the early afternoon for lunch. That was followed by individual family time at their own homes. Then they came back together in the evening for light snacks and desserts leftover from lunch.

As Sharon recounted these family stories, Kate was elated. It was a touching experience for me to see how enthusiastically she listened to them. After lunch, we went back to Sharon’s house. It is filled with many items from her mother and father’s home as well as other special things from the homes of other aunts and uncles. She even has a door that came from Kate’s and Sharon’s grandparents home. It opens out to the deck on the back of the house.

Kate responded tearfully to both the things her cousin showed her as well as the things she told her. As an observer, it was touching to see the way Kate responded. Sharon brought our time together to a close with another special moment. She drove us to the home of her son and his wife to show us the dining room table and chairs that were originally in Kate’s parents’ home. I believe her parents bought them when they moved into their home in 1949. The chairs still had the original fabric on the cushions.

Sharon drove us back to our hotel where Kate rested a while before dinner. This experience is certain to be a highlight of our trip, but we have several other get togethers that I hope Kate will also view as meaningful. One of those is coming up at dinner when we are meeting a couple we have known from Fort Worth and TCU. We should have a lot of memories to discuss.

One final and interesting end to our visit occurred when Sharon dropped us off at our hotel. As we walked away from her car, Kate said, “Now who is she?” I told her that was her cousin, Sharon. This is yet another example of what strange twists can occur with this disease. I am confident that she understood who Sharon is throughout our time with her, but something happened right at the end that caused her to forget.

Closing the Week on a Good Note

We ended the week by attending a concert by our local symphony orchestra. We hadn’t attended in about a year because Kate gets tired in the evening. Last night the program included a Beethoven piano concerto by someone who is an outstanding musician. I encouraged Kate to go. She readily accepted. That is in keeping with how she has handled everything this week.

We left at intermission so that Kate could get to bed. As were walked through the lobby, I saw a friend, and we walked over to speak with him. When we walked away, Kate said in a very disturbed tone of voice, “You shouldn’t have said that.” I didn’t know what she was talking about and when I asked she said, “You know.” I asked again. She said, “You told me I should have told them about our moving to Texas.” I told her I hadn’t said that and that she hadn’t anything about Texas. I could quickly see that she wasn’t accepting that and didn’t say anything more. Everything was fine after that. She was in a good mood all the way home and all day today.