Another Slow Start

At the moment, I am at Whole Foods where I am waiting for Kate who is getting her monthly facial. I always schedule these appointments at 2:00 to give her plenty of time to get ready. Today that was almost not enough. After getting up earlier than usual yesterday, she slept late again today. At 11:45, I tried to wake her. She was not eager to get up but not cross. She mostly just ignored me. I put on some music in the bedroom thinking that might provide a gentle wake up. By 12:15, she was still not up, so I reminded her of her appointment and that I wanted to make sure she got lunch first. That did the trick. She was up, but she didn’t move any more quickly than usual.

We went to Panera since it is close to both home and the spa. We arrived there at 1:25. I decided to save time by just getting her a muffin that she would be able to start eating right away while they prepared a sandwich and salad for me. I got sliced apples with my order so that she could have them. By the time we both finished what I had gotten, it was time to leave. We arrived at the spa at 1:59. I was glad that I never really had to push her. As she was getting dressed, I explained that we would have very little time for lunch and that she needed to get dressed if we were to eat at all. She responded very calmly and never changed her speed.

Earlier this morning, I sent an update on the patient portal for her doctor’s medical practice. Kate has a 1:45 appointment with him on Thursday. I conveyed the change in her sleeping habits although I am not expecting him to make any changes in her prescriptions. I definitely don’t want her to go back on Trazadone. That would probably exacerbate the problem. I hesitate to call this a problem, but it is a bit of one for me. It would be nice if I had a better idea of when she is going to get up. I had thought I was pretty safe making appointment for 2:00. Now it looks like that may be a little too early.

More than that, I think I am bothered by its altering my schedule. Since I get up early, I am ready to eat about 11:30 or noon. Waiting until 1:30 or 2:00 means we don’t have much time between lunch and dinner. That, too, is my problem. Kate is not at all affected by this. If this is something that becomes a regular pattern, I will probably make sure that I have something at home to tide me over until she can get up. Adapting to change is not something new. It will work out.

The Interplay of Kate’s Rational and Intuitive Abilities

There are many things that Kate has forgotten. Most of those involve her rational thought processes.  I’ve often mentioned that the names of people and places probably top the list. This doesn’t mean that they are permanently forgotten. That depends on how well she has known the people or places before and how often she is still in contact with them. Names of people she hasn’t see in a while are gone though she often recognizes the names when I bring them up. She doesn’t always remember our children’s names or that we even have children. As I have said before, she sometimes forgets my name and her own. The same goes for all of the restaurants we visit on a weekly basis. We have eaten at Casa Bella for at least 45 years, but she usually fails to remember the restaurant’s name. She no longer remembers that we live in Knoxville. The same is true for her hometown of Fort Worth.

As I said in a post a few months ago, forgetting a person’s name doesn’t mean that one has forgotten the person. People with dementia continue to hold many of the feelings they have for people. Our emotions, which arise from our senses, continue to guide us in situations where we can’t remember the associated names. This involves intuitive abilities. I recall my mother’s telling me she didn’t have a family. I asked about her son. She told me she didn’t have a son, she responded to me in just the same way she always had. I can hear her now when she said, “You’re such a nice boy. You always were.” You may be thinking, “This doesn’t make sense.” I would say there is much that doesn’t make sense from a rational standpoint.

Despite the weakness in her rational thinking, Kate still thinks at least some of it matters. For example, several months ago when I mentioned the film Darkest Hour., she wanted me to tell her about it. When I said it was a WWII movie in which Churchill played a major role, she wanted to see it. She loved the movie, but I know she couldn’t have understood much of it. I am equally sure that she was able to experience feelings about it. She knew it was about the war. She still has strong feelings about historical events and people even though she would never remember the names or events without any prompting.

Last night while I was watching the PBS Newshour, she worked jigsaw puzzles on her iPad. Late in the show they had a segment on sex trafficking. As they talked with parents about their daughters who were victims of this crime, she audibly reacted with disgust. She wasn’t even watching the TV. She was sitting across the room eyes focused on her puzzle. Her ears picked up the audio, and she understood enough to react to it.

Another way in which she seeks to stay in touch with rational thought occurs on a daily basis. She asks me to tell her the names of people and places. She feels it is important to remember. She rehearses them, but they are quickly gone. When I have the news on in the car, she frequently asks me to explain what they are talking about. This is a big challenge because most of my explanations are delivered in more than a sentence. Before I get to the point at the end, she forgets what it was that came before. Thus she doesn’t understand what I am saying. Then that I do what I should have done to begin with. I try to express in a single, simple sentence what the issue is. That takes care of it. My point is that she still has an interest in things that are happening in the world and around her. She tries her best to understand and remember. I feel that that she can’t ever achieve her objective. Fortunately, she doesn’t appear to experience much frustration over it.

She is trying very hard to be more organized. Most of this involves getting out the clothes she is going to wear. Often this occurs before she gets ready for bed as she did last night. She walked into the bedroom with pants, two tops, and a pair of shoes. I noticed that she didn’t have a night gown and asked if she would like me to get one. She did. When I brought it to her, she put it in her arms along with the pants, tops, and shoes. Then she asked in a whisper, “Are we staying here tonight?” She has asked this question quite a few times before. It illustrates a breakdown in her rational thought. At the same time, she is working to be more in control of her life which requires her rational abilities. It is common for her to take the clothes to the bathroom where she takes her shower and forget she has done so. Then she goes to her closet and gets something else.

A related example is her desire to create photobooks of our family like the ones her brother Ken has done. She hasn’t done any actual work on a book in more than two years. On the other hand, it is not uncommon for her to tell people she is working on them. Frequently when I mention something that we have experienced during our marriage, she will say, “Remember that. It goes in the album.” It is something she remembers and has a strong desire to do. It also requires a lot of rational thought to accomplish that task. She will never make her album, but I think she gets some satisfaction by thinking of it as an ongoing project of hers.

As I hope you can tell, there is still much about Kate that is like it was in the past. She wants to live as she did before, an impossible challenge.

Some things disappear. Others show up. Kate’s esthetic ability is still working.

It has been seven and a half years since Kate was diagnosed. Over the past four years or so, a lot of things have disappeared. Some things have re-appeared. Others have never turned up. Occasionally, things that have been intentionally stored away have suddenly appeared. That happened just yesterday.

Late in the afternoon or after we returned from dinner, I noticed that there was a display of old catalogs on the table next to my side of the bed. I should have recycled all of them originally, but I had put them in a drawer of the table and quickly forgot they were there. Previously, I had a clock radio on the table. It had broken, and I disposed of it. The table looked pretty bare. It was obvious to me that Kate had gotten into the drawer and found the catalogs. She didn’t look at them as something to be thrown away. Instead she thought of them like magazines one might display on a coffee table in a family room.

As I was leaving the room, I noticed something else. She had found a basket of Christmas ornaments and put them beside a bench in our bedroom. She must have found them in a closet and was attracted by them. She wanted them where she could see them. That made me think of a couple of other things that have shown up recently. One of those is a change purse decorated in needle point. It has nothing in it, but she found it somewhere in the house and has been keeping it on the table by her bedside. Sometimes she takes it with her in the car. She found another one and does the same with it. I may have mentioned that she found a book that she must have liked. I know that I have seen her looking at the book cover, and she has taken the book in the car before.

This caused me to think about The Dementia Handbook once again. You may remember that the author distinguishes between our rational and intuitive (via our senses) abilities. Her main point is that we should deal with people with dementia by de-emphasizing the loss of their rational abilities and focus on their intuitive ones. The latter last much longer and provide the person with much pleasure.

This makes me look differently at her collection of things that have been in closets and on shelves. She still has much of her intuitive abilities. She appreciates beauty, and I think she sees beauty in lots of little things around her. Some of these are things that she purchased in the past. She is reconnecting with them. There is often little practical benefit to her now. She doesn’t carry money or ID to put in a change purse. She just thinks it’s pretty. That’s enough. She derives her pleasure from holding it, looking at it, and having it around. Although there are still mysteries as to why she was digging around the house for different things in the first place, I think I understand why she picks out some things. They are things for which she has a special feeling. That comes from her intuitive side.

Another Day Without Panera (And we survived. )

As I reported in my previous post, Kate was slow to get going yesterday. We skipped Panera and went straight to lunch. We didn’t arrive at the restaurant until 1:50. It was after 3:30 before we got back home. We spent almost an hour relaxing in the family room when she said she want to rest a while. Shortly after that, our son, Kevin, called. I went in the bedroom to see if she would like to take the call, but she wanted to rest. That’s just one more change that is taking place. In the past, she would have jumped on the phone right away. Kevin and I must have talked 45 minutes or so. She continued resting another thirty minutes.

When she was up, it was already an hour past our typical time for dinner. I didn’t think that was a problem since we had eaten lunch so late. By the time we got home, it was 8:15. I decided not to watch another musical. We just relaxed a short time. She surprised me by putting away her iPad and going to bed right after 9:00. I had been afraid she would not be able to go to sleep after sleeping so late and then taking a late afternoon nap. I was wrong.

I wasn’t sure what to expect this morning. Not surprisingly, she was up early and was ready for Panera at 8:45. Most of the time she isn’t even up by that time. So here we are. That makes me happy. We should have plenty of time together before the sitter comes. We should not have to rush our lunch. I suspect, however, that she is likely to get tired and want to go home in another hour. That would be close to the time I would get her lunch. We’ll see what happens.

Upon arrival, I noted another change that is occurring. Typically, I set up her iPad at our table and then go to the counter to order and pay for her muffin and our drinks. She goes directly to the drink dispensers and returns to the table. I wait near the table until she has her drink before going to the counter. Otherwise, she doesn’t know which table is ours. Today she approached me and said, “Where do you get ice?” This is something she has been doing for years. Once again, I shouldn’t have been surprised. Recently, I had noticed some confusion when she was at the dispenser. I thought it was just trying to decide what drink to get. Now I think it must be all the all options she has. Like most dispensers, the ice is right among the various drinks. It can be confusing, especially to someone with Alzheimer’s. On one or two occasions, she has given her cup to me to get ice and her drink. This may become our new normal.

A Late Lunch Today

This is one of those days when Kate has slept late. I tried to wake her around 11:00. She was so sleepy that I gave her more time. Finally, at 11:50, I made some progress. She got up and showered. She’s been out of the shower for 45 minutes. A few minutes ago, she still wasn’t dressed even though I had gotten out everything for her to wear. She had taken everything to the bathroom where she showered but came back to our bedroom and had forgotten that I had gotten clothes for her. She asked me to get them. I think she should be about ready. This is going to be a short day, at least for the two of us together.

My Connections with Others Living with Alzheimer’s

During the first three or four years, I didn’t attempt to make contact with anyone else who was a caregiver to a loved one with dementia. I was influenced by the fact that Kate didn’t want anyone to know about her diagnosis. At that point, I had been involved directly or indirectly with caregiving for our parents for 22 years. My mother had dementia, and Kate’s mother had vascular dementia. Because of this experience, I didn’t feel an immediate need for any special support.

As time passed, I felt a need to connect with others going through the same or similar experiences. I did a little reading. Jan’s Story was the first book about Alzheimer’s that I read. I think the second was Still Alice. It wasn’t long after the diagnosis that I visited the caregiver forums on the Alzheimer’s Association website. I was immediately discouraged by what I was reading. I found the personal experiences too depressing. These stories were far different from our own. Later on, I joined one of the Memory People groups on Facebook. All of these are valuable sources of support and advice. They were just too depressing for me. I still check in once in a while, but I am not a regular visitor to these sites.

Early in 2014, I told our children about Kate. Later in the year, I told a few other close friends. I felt as though the word would begin to circulate. That made me more comfortable talking with other people in my shoes. One was Kate’s cousin in Texas whose husband had passed away two or three years before. There were also three other men who lived in Knoxville and caring for their wives. I connected with them and maintained periodic contact until their wives passed away. One of those has kept up with me since then. I think we will continue to communicate once in a while, but he has recently remarried. I believe he should be looking forward and not reliving what I know for him are painful memories.

I have one other Rotary friend that I communicate with mostly by email. He and his wife don’t get out as much, and she is reluctant to have a caregiver. That means we don’t get together face to face.

I also know a member of our church who is caring for his wife. We have spoken on the phone several times. I check in on him from time to time, but I have gotten the impression that he isn’t seeking someone with whom he can establish an ongoing relationship.

Since launching this blog, I have had increased communication with a friend, Rebecca Wilson, from West Palm Beach. We knew each other at church when we were in junior and senior high school and have kept up over the years. Kate and I used to play bridge with her and her husband during graduate school. I don’t think we have seen each other since then, but we have kept up through Christmas cards and email. Her husband has Parkinson’s. She checks this blog periodically and sometimes offers her comments and observations.

A week ago, she told me about another friend of hers whose wife has Alzheimer’s. She told me their situation sounds similar to ours and suggested to each of us that we get in communication. He lives in Florida, so we wouldn’t actually get together, but we could talk on the phone and communicate via email. In fact, he called me Friday night. He and his wife are on a short vacation to the North Carolina mountains and were leaving for Florida yesterday. We didn’t talk long, but it sounded like our experiences are somewhat similar. I believe she was diagnosed in 2012, Kate in 2011. Like Kate, his wife has had no issues with agitation or combativeness, and they are still enjoying life. I look forward to communicating more with him in the days ahead.

Even though they are not large in number, I feel a good bit of support from these connections. I also believe I am likely to participate in support groups when Kate is at a later stage of her disease. That is when I am really like to need more contact. Right now, I think my needs are met.

Would you believe a fourth trip to see the Mr. Rogers’ documentary?

We had a full but very nice day yesterday. Kate was up early enough for us to make our trip to Panera, something that has been off and on lately. We were there about an hour and a half before leaving for lunch at Bluefin. From there we came back home for almost an hour before leaving for a movie.

When we were with our friends on Thursday, we learned that one of them had not seen Won’t You Be My Neighbor? She is 93 and is in excellent health and quite active. She said that one of our pastors had mentioned it in a sermon recently and wanted to see it. I called her Friday afternoon and asked if we could take her. We went yesterday afternoon. She loved it, and so did Kate who gave no sign that she remembered having seen it before. This goes down as the most times I have ever seen one movie. And I still enjoyed it.

Following the movie we went to dinner with our friend. Then we dropped her off and came back home where we relaxed a bit before retiring to the bedroom where we capped off the day watching the last of Fiddler on the Roof. I think this is my favorite musical after Les Miserables. I like each of them for different reasons. The music and then the story draws me to Les Miserables, but it’s the story and then the music that I love about Fiddler. I play them frequently for Kate. This and seeing Mr. Rogers a fourth time are good examples of my deriving pleasure from the same things that make her happy. I am grateful. We are very fortunate.

Catching Up on the Past Few Days

Life is still going well for us though Kate has slept late or wanted to three days in a row. I was glad to see that she was up about 8:45 yesterday. It was another day for the sitter, so I was she was up for us to spend a little time together before I get away for the afternoon.

On Wednesday, I woke her about 10:45 so that we could get to lunch before the sitter arrived. She was quite groggy and didn’t want to get up. I told her I would like to have lunch with her before leaving. Then I gave her the choice to remain in bed and have Mary take her to Panera for lunch. I have done that before. She has always said she would prefer to go to lunch with me. Wednesday she said it would be fine if Mary took her. I left her to get up at her leisure. In a little bit, she got up and started getting dressed. By then, we were a little pressed for time, so we went to Panera instead of our usual place. I called Mary and asked her to meet us there. We’ve done that a few other times when we were running late. That seems to work for everyone.

I made my usual trip to the Y and then went to an appointment with one of our associate pastors at church. Since the morning is Kate’s slowest time of the day, we have not been regulars since last fall. The summer schedule is even more difficult for us. The service starts at 10:15. It just pushes Kate too much to make that.

It had been a while since I had spoken with any of the pastors. I like to keep them abreast with how things are going. We met for an hour during which I gave a rather thorough and honest account of what our lives are like. To those of you who are regular readers, it was very abbreviated overview of the things I have posted in the past.

When I got home Kate and the sitter were sitting in the family room. They had gotten along fine. Kate was ready to, so we went directly to dinner. We were back home in time for the evening news. Then we watched a portion of Fiddler on the Roof. It was a good day.

Thursday I had to wake Kate, but she got up easily in contrast to the previous day. We had a very nice and leisurely lunch with two church friends. We ate at the continuing care facility in which one of them lives. It is a very attractive place that lends itself to easy conversation. That’s something very important for folks our age. It had been more than six months since the four of us had been together, so we had plenty to talk about. Since three of us are pretty big talkers, Kate did not say much. However, she had a good time.

We came back home after lunch. I had a meeting for two hours at the house so that I didn’t have to leave Kate. Then it was time for dinner. We went to a restaurant that is a little nicer than the ones we visit most often. The ambiance, meal, and our server were all good. Then we came back home and watched a little more of Fiddler of the Roof. It was a good way to close the day.

Who am I? (I’ve watched Les Miserables so many times over the past several weeks that I want to answer Jean Valjean.)

We’ve been at Panera for thirty minutes. Kate is working jigsaw puzzles. I’ve been checking and responding to email. A minute ago, we had the following conversation.

KATE: “Who are you?”

RICHARD: “I’m your husband.”

KATE: “But what is your name?”

RICHARD: (Knowing she wants my full name.) “Do you want my first name?”

Kate gives me a dirty look.

RICHARD: “My name is Richard.”

KATE: “What else?”

RICHARD: “Creighton.”

KATE: “Oh, I knew that; I just forgot. What is my name?”

RICHARD: “Maybe I should ask you that?”

Kate gives me another dirty look.

RICHARD: “Kate Creighton.”

KATE: “That’s right.”

We play this game frequently. I am reasonably sure that sometimes she doesn’t remember her own name. (I know she doesn’t always remember mine.) I am never sure at the particular time if she is just playing the game with me and really knows her name or if she really doesn’t (at that moment). This was one of those times when I’m not sure.

I hope the tone of this exchange comes through the way I intended it. There is a serious undertone because she really does forget my name. On the other hand, the way she enters into this “game” seems very light-hearted and innocent. It is very much the way a small child might play a pretend game. I often wonder if she feels this is a safer way for her to find out my name than to ask me in a more serious fashion. I guess that is one of those things for which I’ll never have an answer.

Running behind this morning.

It’s a beautiful day today. I woke up at 5:20, a good time for a summer walk of 3.4 miles, cooled off in the pool for 20 minutes, and had breakfast. You might think I had plenty of time to write another post, but somehow I haven’t done it.

This is another morning when Kate would have liked sleeping longer. I woke her at 9:45 so that we could be ready to have lunch with two church friends at noon. We are to pick up one of them at 11:30. Fortunately, Kate got up quickly. She’s a real trouper. She was ready early enough for us to make a stop by Panera for her muffin and a little relaxation before we leave here in about thirty minutes. I am always relieved when I don’t have to rush her.

We have another engagement later this afternoon, so I will be out of touch most of the day. When I have a moment, I will try to catch up on our day yesterday. Fortunately, I don’t have anything unpleasant to report.

Wishing everyone a great day.