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.