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Feeling Guilty

Once in a while I feel a little guilty about the way I respond to both Dad and Kate. Last night, for example, I had turned my cell phone on vibrate while we were attending our music club meeting. I forgot to turn it back to ringer when we returned home. This morning when I got up I noticed that I had missed 3 calls and had 3 voicemails from Dad – all around 11:30. He indicated that he was a little disoriented and was sitting on the side of the bed and could not find his call button. In his first voicemail, he said something about thinking he was in a kitchen somewhere. Although 99% of his calls involve no urgency or crisis, once in a while he needs something like last night when he couldn’t find his call button. Two nights in the past week or 10 days, he has placed 10 calls one night and 8 calls another. Most of these calls he doesn’t even say anything because he can’t hear anything said on my end. Nonetheless, I want him to feel that he can reach me when he is unable to get attention from the staff; so I feel guilty that I wasn’t available for him.

Similarly, I occasionally find myself not being as patient with Kate as I should be. In spite of her forgetfulness, she does remember a lot; so I tend to expect her to remember things that she doesn’t remember. The other day I asked her if she remembered some person or occasion from a few years back. She indicated that she had no memory of him/it and said, “”You forget I have Alzheimer’s.” Most of the time I do remember and don’t criticize or even point out her mistakes, but sometimes I give a response that shows I am treating her as though she does not have Alzheimer’s. I feel a tinge of guilt when this happens.

Late yesterday afternoon we went over to Panera Bread to get a bite before going to the music club. It was beautiful outside and we chose to eat at an outside table. We sat at the very same table we had sat at a few days ago. After sitting down, Kate said, “”This is the first time we have sat outside here.” I said, “”Do you want me to answer honestly?” She naturally said, yes.” I told her that we had just eaten outside a couple of days before. Then I felt guilty because I felt she had no choice but to say she wanted the truth but that giving her the truth did not serve any useful purpose.

The weekend was stressful. Kate had agreed to help with refreshments for Monday’s meeting of the music club. When she did this, I was concerned and suggested we purchase what we needed rather than prepare them ourselves. She felt she really wanted to make them herself. I notice there are a number of occasions when she wants to volunteer to do something like this when I think it is too stressful for her. It seems important to her, however, to retain as much of her ability to do things as she can. I can easily understand this, but what troubles me is that 1) I know I will need to help her and that will be difficult for me because they are usually things that are not my cup of tea and 2) she is going to be stressed in doing what she wants and has committed herself to do.

At any rate, as we go to the weekend, I told her I would go to the grocery store for her. Then I had to push her a little to actually get started with the cooking on Sunday afternoon. I was pushing especially hard because I wanted to accomplish as much as I could before going to see Dad and also because she wanted to attend a performance of Verdi’s Requiem Sunday night. She is very slow to move. This has been true for several years. In fact, she has never been sensitive to time. I now believe one of the consequences of Alzheimer’s is moving more slowly because the brain functions more slowly.

One of the first things that I noticed in cooking was that she let me take the lead in getting things done. That is very unnatural for us in that I am not and have never been a cook in the baking sense. Cooking meat on the grill is a different matter. Despite her wanting to do things for herself, when it gets down to getting it done, she has to depend on me. When she does this, I get the greatest sense of her having Alzheimer’s.

In other situations she does beautifully. For example, last night at the music club, I don’t think anyone would ever suspect that she has Alzheimer’s. She is able to converse quite naturally and confidently. It is only when she has to make her brain work – e.g., figure something out like quantities in a recipe the way we were doing Sunday. Sunday she put 2 cups of sugar in the crust for the lemon squares and the sugar was supposed to be in the lemon itself. Fortunately, the lemon squares were edible and people in general liked them, but the crust was crystalized sugar and not like it usually is. Before leaving the house on Monday morning, we tried to prepare praline cookies. I left just as she was putting them in the oven since I thought the recipe was simple and one she had prepared many times. It turned out that she had to throw away one cookie tray because she had overcooked them.

When we got home last night, she was able to unwind. She was happy that people had liked what she had prepared even if we did not think they were up to her standards. When we went to bed, she indicated that she was relaxed and did not plan to volunteer to something like that again. That certainly made me feel better.

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Some Days Are Better Than Others

We’ve had a good week, but yesterday there was a frustrating moment. Kate wanted to send Taylor a birthday card with a note that indicated we were giving him tickets for the baseball team and the hockey team. She worked for the better part of two hours trying to select an appropriate eCard and to enter the email addresses of Rachel and Kevin. She can’t remember their addresses and has Rachel’s address listed as Kevin’s. In addition to the memory issue she can’t seem to type information correctly; so she had to re-enter the addresses a number of times. Then she would ask me once again what their addresses are. I volunteered to do this for her, but she insisted that she would get it. It was as though she didn’t want to acknowledge that she couldn’t do it.

This led to her being somewhat depressed, and although we went out on the patio to chat and have a glass of wine, she never recovered. The day had ended in frustration.

This morning she sat down next to me on the island and was looking at the screen on my old computer. I was downloading files to put on my new computer. After I withdrew the flash drive, she picked up my computer and headed out of the kitchen. I asked what she was doing. She said she was going in the family room to work on the computer. I told her that computer was mine. Then she wanted to know where her computer was. I told her I did not know but would help her find it. She didn’t want help. In a few moments she had found it in the bathroom. This is a good illustration of how quickly she can forget. In this case she had been using her computer in the family room and got up to go to the bathroom putting her computer down on the bathroom counter. Then she came out and forgot that she had taken it there. It also shows how poorly she is able to discriminate among different things. In this case my old computer versus her new one.

When do we tell the kids?

We haven’t talked in a while about telling Jesse and Kevin about her Alzheimer’s. She was far from ready to tell them or anyone else the last time we spoke which was several months ago. She prefers not to tell them until we have to do so, or when it becomes obvious. I suspect that these events will occur at the same time. That will also be what happens with friends and acquaintances as well. There will be a point when everyone already knows or suspects. Then we can acknowledge the situation. Until then, we just keep everything to ourselves.

Note about Dad

Yesterday Kate and I took Dad to the Kiwanis spring luncheon. He looked sharp in his pin stripe suit and tie. He also seemed to enjoy himself although I can tell he experiences frustration in group situations like this where he unable to hear or follow everything (or anything) that is said. Nonetheless, I think it was good for him to get out. He still finds himself energized by the presence of other people.

Before we left Mountain Valley after returning Dad, we spoke with Dad’s speech therapist. I asked her about the upcoming Prom Night . She said that she is going to be there with Dad for the occasion. I was pleased because that occurs at a time we will be in Arkansasfor Dorothy’s wedding. She loves him so much that I won’t think of this as an imposition, and, of course, it will be good for Dad.

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Stress, Frustration, Depression?

Kate does not talk in depth about her AD. She mentions it mostly indirectly and fleetingly. That is, she says something like, “”I just don’t know; I can’t remember anything.” Then she moves on. I have learned (mostly, anyway) not to push her to say more. She seems to want to be comfortable to recognize her AD but not to dwell on it in a discussion. She does make reference to the stress of life. She also seems down at times. I also note that there are related things that have nothing to do with memory. For example, over the past few years, she has been reading the newspaper less and less. Nowadays, she reads only infrequently. I think she is frustrated by not understanding what she is reading, but again, I don’t press her. I do sometimes joke with her about not being able to probe for more information about anything she brings up.

Another thing that has become next to impossible is operation of the DVD player or doing a number of things on the computer. I think one of the reasons she likes having me around is to be there to help her address the never-ending resolution of problems.

Yesterday she called me to say that she had forgotten another hair appointment. Neither one of us had written it down. Later she said that the message she received from her hairdresser indicated that she had forgotten to make a reminder call, something that is not routine but something she has started doing for Kate.

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Miscellaneous

Yesterday was not a good day for Dad. Kate and I had gone out to together to see him with plans to go to dinner afterwards. When we got there, he was under the sheet and spread as usual. When I tried to wake him, I noticed that he was much more difficult to awaken than normal. I tried more than 5 times to get him from a seated position and into his wheel chair without success. Finally, he was able to turn around and sit in the chair. He did greet Kate but not in the normal way that he would have. He was very groggy. I also noticed that he was perspiring. This was not a special surprise in that he was under the covers and wearing a sweatshirt and the AC was not on. Yesterday was in the mid-80s.

We went to the dining room where he mostly sat in front of his food. He did eat his tomato soup and sampled his carrots and chicken and dumplings. He was never very alert during the whole time we were with him.

Kate and I went from there to Hathaway’s.  We have often done so on a Wednesday. We sat in a booth in the bar and enjoyed our usual dinner of grilled salmon with asparagus. As we often do, we also shared a key lime pie for dessert.

Kate had been to see Dr. Reasoner before we went to see Dad. She got a prescription for another medication (Namenda) the doctor had mentioned in earlier visits. She also got a prescription for something to help with hot flashes. When signing in at the doctor’s office, Kate forgot Dr. Reasoner’s name and came over to me to ask what it was.

I believe she was down a little after the visit. We spoke briefly about the visit at dinner, but she said she didn’t want to talk about it any further. After finishing dinner, she said, “”Could we just go home and cuddle?” Naturally, I said yes. I put on some music and got into bed and held her. I have mentioned in other posts that we have embraced more strongly and meaningfully since her diagnosis more than a year ago. Such was the case last night. When I first saw her this morning, I mentioned our having a nice evening, and she couldn’t remember. This is yet another example of how Alzheimer’s affects both parties. She felt she had had an experience but was robbed of it because she couldn’t remember. I was also disappointed because part of remembering is remembering together. I know that we will have more of these experiences as time passes.

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Everyday Life

Earlier this week, Kate expressed her frustration over my getting home as late as I do after my daily visit with my dad. I told her I would go out a little earlier and be home earlier.

I started this new schedule yesterday. This involves a clear choice to put her over Dad in that I like to make sure Dad’s teeth are brushed and he gets his sheet and bed spread covered over him.

Today, Kate had a routine appointment with Dr. Reasoner. She couldn’t remember the doctor’s name when asked to put it in a form. She has known her doctor for years and has been seeing her every four to six months since her diagnosis. I was a little surprised that she couldn’t recall her name.

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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.