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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.

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“You Told Me That”

Just a brief comment today on something I have mentioned before; however, it seems so common now that I chuckle when it occurs. Frequently when I tell her something she says, “You told me that.” Of course, it is quite possible that sometimes she is correct. It happens so often and in instances when I know that it would be impossible for me to have told her because I just learned about it. It makes me wonder if she says this because she forgets so frequently the odds are that whatever I say is something she has forgotten. Another possibility is that it is something akin to a deja vu experience.

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Everyday Problems Associated with Alzheimer’s

The past week has been a full one. We celebrated Valentine’s Day by attending a concert by the Knoxville Symphony on Saturday night, the Symphony League’s Valentine’s Ball on Sunday night, lunch at Casa Bella on Valentine’s Day, and the UT Symphony that night. These were good times for both of us and serve to remind us how much we can continue to enjoy despite Kate’s Alzheimer’s looming over us. We continue to put a special emphasis on our relationship which seems more precious to us with every passing day.

On the downside, on Tuesday morning Kate took a walk around the neighborhood with one of our neighbors, Lucy Grayson. During that walk Lucy commented on another neighbor and her husband, Barry and Mary Jane Winters. Mary Jane also has Alzheimer’s which we have been aware for 2-3 years. Lucy indicated that she felt sorry for Mary Jane and then said, “I feel especially sorry for Barry.”

These are the kind of things that occur routinely, but they have a special meaning when you also are plagued with the disease. It makes me think once again that people need to be more careful about what they say.

Kate and I had lunch together and then she left in her car to run a couple of errands before returning home. I received a phone call from her a little later. She left a voice mail as I was in a meeting or phone call at the time. The message was a bit garbled but I could tell she had had an accident of some type. I sent her a text and asked if she were all right. She answered quickly that she was; so I called to find out what had happened. She told me she was pulling into a parking space and misjudged the distance to the car on her right and had knocked out her front headlight. When I got home that night I discovered that it had not only broken the right signal light but had also damaged the front fender, the right front passenger door, the right back door which will not open, and the right rear fender.

We sat down and had a glass of wine and discussed the events of the day. That is when she told me about Lucy’s comments that morning as well as how she was feeling about the accident. We didn’t say much. It was obvious to me that she was shaken by the experience. It is just one further sign of her inability to do anything right. I try to reassure her when these things happen, but we both know her situation is getting worse and affecting lots of things besides memory.

Last night at Kate’s suggestion we built a fire, had a glass of wine, and brought in Chinese for dinner. It was a good time for conversation. We find a lot of our conversation relate to things we are thankful for. I think this is our unconscious way of counterbalancing the trauma of the Alzheimer’s. It was a very nice evening. One of the things she said when we talked was that she had lied about something and wanted to explain. She went on to say that she had indicated on Tuesday night that she had not been bothered by Lucy’s comments, but the truth was that she had been bothered by the comment that Lucy felt even sorrier for Barry than for Mary Jane. She didn’t say this, but she doesn’t want to be a burden on me.

On a slightly different note, many decisions are influenced by Kate’s condition. For example, I have been planning to buy a new car next year and thought that I might even delay a little longer. My idea was that Kate may not be able to drive much longer and that I might trade in both cars when I buy a new one. This changed this week when I have significant repair bills on my car and have decided that I should buy a new car now. Kate asked me if I were planning to pass her car along to me. I told her I was not as it had so much more mileage than hers. I got to thinking later that she might have been thinking that her station wagon was getting to be too much for her and that she might do better with my car. Now I am beginning to wonder if getting her a smaller car might be an intermediate step. At the moment, I have decided against that.

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Beginning To Think About Our50th Anniversary

During this week Kate continues to feel some frustration over her AD. She has said “I am a disaster.” Also “I am a basket case.”

Our pastor called me on Thursday afternoon, and we had a lengthy conversation. He was calling related to a personnel matter (a replacement for our church organist) but also asked about Kate. I gave him a rundown on the situation which corresponds rather well with what I have written within these pages.

Last night Kate and I had a conversation related to our desire for travel in the years ahead. We also talked about our 50th wedding anniversary in 2013. Her priorities are to go to the Galapagos and New Zealand and then Russia. We also agreed that we would like to have a family celebration for our 50th. I am going to look into a beach house somewhere along the Gulf coast of Florida or Alabama. I didnt tell her, but I am especially interested in this experience in connection with her Alzheimer’s and decline. I can’t help wondering now if the children will know by then. I have to believe that if we spend a week together, they will have to suspect.

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Kate Is Discouraged

Last night Kate and I had a good but very saddening evening. When I got home from seeing Dad, I sensed that she was upset. She was working on our pictures from Vienna. She is making an album similar to the one she and her did for the her mother’s family. I asked her if she would like me to get us a glass of wine and go over what she had done so far. She accepted enthusiastically.

I got a glass of wine for each of us, and she continued working for a short time while I sat on the sofa for her to bring her computer to me. She started to express her frustration. She simply can’t remember names or events that she needs for the album. She had called me twice while I was with my dad to ask the names of two operas we had seen in Vienna. She was still having trouble with that and where we had seen them.

This led to a brief, but much a longer and honest, conversation on how she feels about her AD. She told me she wishes she would rather have cancer, a heart problem, or anything else but AD. She talked about the frustration she has about not being able to remember anything. She talked about her anger over my spending 2 hours a day with Dad when she needs me. We talked together about my spending more time with her. I told her that I had already been thinking that the change in our office arrangements might be a good time for me to spend less time at the office. She then mentioned the possibility of her coming to the office to be with me because she feels she needs to ask me so many things. She seems to feel lost when she is alone. At the same time she talked about her continuing ability to do things. She mentioned specifically that she often finally figures things out even if she struggles to do so.

I have said it before, but I now want to SHOUT it. People say that at least the person suffering from AD doesn’t know it. How wrong this is. Of course, in the much later stages that is certainly true. However, there are years before that when the person does know something is wrong even if the condition has not been officially diagnosed. In a recent conversation, she said, she wasn’t so sure now that she was glad to know.

At any rate, she can see herself declining. It is not just my own observation. Still, I don’t think many, or any, people other than I know her situation.

I continue to be sometimes feeling panic as I see that we are moving toward a time when our lives won’t be as idyllic as they have been. We still want to travel, share good times with friend, etc. I feel like that may be affected within the next year or two. I am going to have to work hard to plan things in order for us to do as much as possible. This comes at the same time that I have to worry about the future of my business and taking care of Dad.

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Where Are My Keys?

I suspect it may be clear from what I said last time that I am going through a sad time as I think about Kate’s decline and as I imagine where we will end up.

Today I made two presentations to a client group just outside Knoxville. As I was leaving, I got a phone call from Kate saying she was at Bojangles and couldn’t find the key to the car. I told her to sit tight and went to meet her with another key. When I got there I looked for the key and found it in the console. She didn’t remember putting it there, and I don’t think she had actually gotten out of the car. Thus, it would not have been hard to find for someone else, but with AD, a lot of things are difficult.

I hated to leave her, but when I got home, she said she had gotten along all right. She was having trouble with email, and I helped her. We went to dinner at Altruda’s, and she has gone to bed. I went to the bedroom and she said she had forgotten to take her evening medicine. I got it for her. After she had taken it, she said, “I’m glad you are back.” This is the kind of thing she could have said to me in An earlier time, but I think we both read more into it now.

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More Discouragement

Last night we had a nice evening – a fire, wine and cheese and olives, and good conversation. Kate indicated that she was discouraged over her decline. We both talked about making the most of the time we have together. We never talk in terms of specific amount of time, but I think she believes we have more time than I do.

This conversation was brought up by my showing her a video on Michael J. Fox and Family Ties and a song, “At this Moment.” I first heard this on the show and loved it but didn’t know the name. Periodically over the years I have thought about getting it. Yesterday I went to YouTube and found a part of the episode that included the song and then downloaded it from iTunes.

I put it and 24 other songs on a playlist on my iPhone and played them while we talked. The last song was a repeat of the first one I played, “At this Moment.” She had no recollection of the song when it was played again. Even though I had played it a couple of times and she indicated she liked it as well. That is when she said something about being discouraged.

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Stressful Times

We’ve had a couple of stressful weeks following our trip. We still have to finish up an irrigation leak in the front yard that we identified before leaving, Kate got a cold that has lasted until the last day or two, her computer went out, and we bought another, Dad’s heart rate dropped to 30 and he went to the Heart Hospital for a couple of days, business is off and I have been deciding whether or not to close entirely, we’ve had a buyer for our building and settled on a contract, etc.

Kate seems to have felt better this week although she was a little upset with herself this morning as she prepared to get ready for a PEO Founder’s Day luncheon. She couldn’t remember the exact time of the lunch and waited too late to find someone at home who could tell her. Then she lost a magnet for the back of her PEO pin. She found it but said, “”I’m a disaster.” At 12:06 she asked me what time it was. I told her. and she thought it was earlier; so it meant that she was late for what turned out to be a noon lunch. I drove her which reduced her stress and told her I would try to take her places whenever possible.

The good news is that selling the building will take a little financial pressure off of us. In addition, Megan figured up the committed projects and our part of the income. It turns out that we almost have everything covered for the year. All we need is another 4-5 average projects to get that; so it looks like we will make it another year. That’s good because we agreed to sign a one-year lease with the new owners of the building..