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Problems with Dad

Yesterday Dad didn’t want to wake up when I visited him. I had arrived somewhat earlier than usual because I needed to get back home for Kate and me to get something to eat before attending a concert by a local choral group.

I took him several bananas thinking he might like/need the nourishment because he sometimes doesn’t eat much of what eats gets in the dining room. He didn’t hesitate to want to move from his reclined position to sitting up. We got into the wheel chair with minimal difficulty. He did seem somewhat more lethargic. We got to the library where I read him his mail. He made virtually no comment throughout. I finally decided to call my brother, Glen, thinking that this would arouse him. However, he continued to sleep in his wheel chair. I had a 7-8 minute conversation with Glen, and Dad never said anything.

Finally, I took him to the dining room. By this time he accepted a banana, and he indicated he would like a cup of coffee. I left him at the dining table before he finished. He had eaten his dessert and a few other things. He still was relatively uncommunicative. This is the first time I have observed this since the first week after he returned from his last visit to the hospital a few weeks ago. I have also observed more confusion since his return. In addition, he has had cold hands a number of times and the edema in his left arm and hands has continued without improvement. I have mentioned this to the doctor, but he has been unable to identify a specific cause. Somewhere along the way, I have heard that congestive heart failure can be correlated with swelling. I am beginning to think this may be the case.

Dad has also had more trouble with his telephone than in the past. I bought him a new one last week. Two nights ago, he called me 10 times and Glen 4 times. Most of those times he didn’t say a word.

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Frustration

I have commented a number of times about the fact that the person who has AD recognizes that she has it and finds it frustrating. For example, last night when I arrived home after visiting my Dad at Mountain Valley, Kate said, “Finally, you’re home. One day I’ll be dead, and you’ll still be visiting with your dad.” After that she apologized, and said, I’m just so frustrated.” I asked, “You mean by the general situation (trying to be subtle instead of “your AD.). She said, “Yes,” and then, “Let’s not talk about it.” We then went to the kitchen where we put some things together for dinner. I had cooked chicken thighs over the weekend. I made a chicken soup, and she sliced tomatoes and cooked green beans. Then we had a delightful evening eating outside with a glad of wine.

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Good Times

I have been reflecting lately on the nature of my comments and decided I ought to be more thoughtful about frequency, topics, and relevance to my musings. We’ll see where that takes us. The first sign of this is the title for today’s entry. Here’s the story,  and it’s short.

Right now we are at the peak of the spring flowers, and the weather lately has been grand. One of the things that Kate and I have enjoyed over the years is sitting outside on the patio with a glass of wine and just conversing. Last evening was one of those times. I had come back from my daily visit with Dad at Mountain Valley and began to prepare some chicken soup with some chicken thighs that I had cooked over the weekend. Kate was planting some new flowers on the neighbor’s side of our front yard. She came in just about the time I was ready to serve; so we took our soup and wine outside and enjoyed the view, the weather, the conversation, and just being together. These are moments we treasure, and, fortunately, we have many such moments even in the midst of some of the trials that we have faced. We enjoyed these long before we knew about Kate’s AD.

My spirits have been higher in the past few days which relates to the successful closing on the building, the exploration of new properties to buy with the proceeds, the good feeling that the staff has about our move upstairs, and the fact that we have had a number of new business possibilities. All these things remind us of how much we have to be thankful for.

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Pain, Pain, Pain

This past Friday, Kate and I drove to Nashville where we had dinner with and old friend from Wisconsin and three of her friends. On Saturday, we got together with our daughter, Jesse, and her boys who were there for half-marathon on Sunday.

Overall it was a good weekend, but it was also a trying one for Kate After Friday night’s dinner, she commented on how people seem to ignore her and give their attention to me. She also expressed her fear that increasingly she feels uncomfortable in conversation. She has a special fear of asking things she has just asked which I have observed a few times. She says she sees herself becoming quiet the way she has seen other AD victims do.

She hasn’t wanted to talk about it, but I have noticed that she was low as we returned on Monday. She has my cold now, but I don’t believe that is the explanation. We were together for lunch, and I took her to a new ice cream shop downtown to give her a little boost. She seemed to enjoy it, but it didn’t really change things.

I should have entitled this entry (started this morning) as Pain, Pain, Pain. It is the confluence of several things at one time that makes it stressful. I am reminded of the Psalms. Many of them are written when the authors were on the mountain top. These sing praises to God and give thanks for all the blessings of life. Many others, however, are written from The Pit of despair. These focus on the challenges of life and often question where God is and appeals to God for help out of disaster. Though my own moods are usually upbeat, I have recognized in the past few years that external events can make it hard to feel optimistic. Right now is one of those times.

Over the past 3 years my business has been terrible. I have lost a lot of the money that I had made over many years. We are now down to 3 staff members. I recently sold the building to a law firm that will occupy the downstairs. We are going to lease the upstairs from them. Last week we made the move and like the new arrangement. However, in the midst of feeling good about selling the building and sensing that the new quarters suit us better, the business itself continues to decline. We just aren’t getting calls anymore. We committed to a one year lease thinking we would be safe because we have booked enough business to almost cover us for a year. It is so slow now that I am beginning to wonder if we were dreaming.

Now let’s add the events of the weekend and the following days at home. For me personally the weekend was great because we were with people we liked and enjoyed pleasant, stimulating conversation. In addition, we had the joy of being with Jesseand her boys. On the other hand, it was not as good for Kate as I pointed out above. She continues to recognize her deteriorating condition. I will SCREAM once again that for a good while AD patients know they are losing it. It is horribly depressing. I think it is especially depressing for people who value intellectual ability as Kate does. It is more than intellectual ability. It is also the ability to operate confidently in the world –, to be able to handle everyday things.

Last night we went to a movie called The Matchmaker at our local arts theater. After we left the movie, Kate said, “I didn’t understand it at all – even after you explained it.” I recognized that she wasn’t just saying that it was a confusing movie but that she was saying her condition prevented her understanding what was going on. When she says things like this, I can see the pain in her face. Then I don’t know what to say. I told her I wished I could help her and that I love her. I started to say more, and she stopped the conversation. This is a typical pattern. Things occur that lead her to say something acknowledging AD and her frustration. Then just as quickly she wants to move on as if continued conversation will only make it worse. I know the pain is greater for her, but it hurts me tremendously.

One thing that struck me and has on other occasions is similarity in my experiences with my dad. Yesterday afternoon I took my old iPhone to the ATT store and had them set it up for dad. When I tried to show him how to turn it on and make calls, he simply couldn’t do it. It was frustrating for him and for me. I had underestimated the difficulty for him. I had even set up a set of favorites to make it easy for him to dial. All he had to do after turning on the phone was to press the name of the person he wanted to call. It was next to impossible for him to do. So this experience was followed by Kate’s not being able to understand the movie that was not that complicated.

Seeing her deterioration over the past year, I can’t help wondering where we will be this time next year. We are planning to make a trip to the Galapagos in January. Will she be up to this? It was a bit of a chore getting her ready for the daily activities on the trip to Africa. Will it be impossible next year?

Yesterday morning, I saw Herman and Betty Snyder at Starbucks. Betty said she was going to call Kate and asked me if she would like to join a Care Team at church. I explored the responsibilities and told her that I thought she probably would not want to do it. When I spoke with Kate last night, she said that she might like to do it. This makes me wonder how realistic she is about things that she can undertake.

Our conversations involve references to future travel. I get the impression that she believes this is something that she will be able to do for a longer period of time than I think she will. Right now, for example, I am thinking the trip to New Zealand may need to be a cruise because it will be easier logistically.

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Multiple Signs of Decline

Kate continues to exhibit a variety of her symptoms. Without my giving an exhaustive account of each one, let me just list a few of them briefly.

1. The other night we had a good conversation in which we reflected on our marriage and some of the things we remember so fondly. The next morning when I said something about the conversation, she didn’t remember it at all.

2. After returning from her hairdressers the other day, Kate said that our daughter may know of her Alzheimer’s.  She has suspected this before, but feels more confident now.

3. This past weekend we went to Nashville to visit friends. She was quite stressed in getting ready for our trip. I told her the time we would leave . We left an hour and a half after that time.

The four of us went out to dinner with another couple whom we had not met before. We had a pretty active conversation throughout the evening, and it was hard for Kate to play an active role. She later told me that she felt very isolated. She mentioned that she could imagine her becoming quieter in social situations like this.

She also told me that she was hesitant in the conversation because she was afraid she was going to ask about something the other person had already told her.

I can’t recall another specific example, but she seems to have a harder time putting things together when we are with other people. She often doesn’t understand what people are talking about. The other day after seeing a movie she confessed that she couldn’t follow it.

My recognition that she knows exactly what is happening and is stressed by it dominates a lot of my thinking. I think this is because so many people believe that  person with dementia doesn’t understand that she has the disease.

Apart from the experiences with Kate, I had a frustrating day with Dad as I tried to teach him to use my old iPhone. He just couldn’t get it. Then tonight Kate couldn’t understand the movie. This is not the first time I have seen parallels in their situations.

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Experiencing the Consequences of Fregetfulness

I continue to feel that Kate has been feeling the pain of losing her memory. A week ago today she had a PEO meeting. I am trying to drive Kate to places that might be confusing for her. That morning I got the address and wrote out directions from our house to the home of the woman hosting the meeting. I had a meeting that morning while she would be en route; so I told her I would stay in touch with my phone for any messages. When I didn’t hear from her, I thought everything was all right.

When we spoke on the phone later that afternoon, I asked if the directions had worked. She indicated that she didn’t want to talk about it. That evening she told me that the meeting had been changed to another member’s house. She had received an email the week before letting her know of the change but had forgotten. When I asked about her getting there, she told me that she hadn’t made it. I asked what happened, and she said she didn’t want to talk about it. I honored that request; so I still know only that she didn’t make it to the meeting and assumed that she was unable to find it. It is also quite possible that she got to the original place and then couldn’t reach anyone to tell her where the meeting was.

There are other examples of her forgetfulness, but I can’t remember them at the moment. Suffice it to say that she continues to be frustrated by her inability to remember things.