Despite my anxiety for the past week, I have felt better today. That is largely because I finished my Rotary task (calling 25 members to get their pledges of participation in projects for the year), completed the budget for the music club, ordered tickets to The Met for our trip in December, helped Kate order a family album from Creative Memories, called Kate’s cousin who has been in the hospital, and called someone at church to check on flooding in her neighborhood. In addition, we are getting busier at the office. Although we have been making a gradual comeback, we are going to be busy from now up until just before Christmas. When I got to the office this morning, the staff was working out timing for the various projects. For the first time in 2 years, they will not be on furlough. At least through December they will work full time. They have been working only 4 days a week.
One of the things that Barry Peterson touched on his book was the impact of caregiving on the caregiver. I have tended to minimize that, but during the past week or so I have experienced a sense of anxiety. It manifests itself in physical symptoms that have seemed either like a type of indigestion or angina. I have been doing my own self-diagnosis. At least 3 times I have felt it serious enough to take an extra aspirin when feeling symptoms. At other times I have taken Pepcid.
At this moment, I am feeling better. I do have a funny feeling that seems to be located in my esophagus above the level of my heart. Last night when I got into bed, I felt as though my heart rate had increased. I can only describe this as anxiety. I got up, took a Benadryl, ran in place for about 15 minutes, and got back into bed. I went to sleep rather quickly and slept well until Dad called at 4:27 this morning. As he does so often, he didn’t say a word. I would love to watch him when this occurs. What I imagine is that he is holding the phone out in front of him and can’t hear me say hello several times. When I have been with him I notice that he sometimes holds the phone upside down against his ear. Other times he holds the phone up to the side of his head but not over the ear.
This makes 2 days in a row that he has awakened me early. Yesterday morning he called at 3:30 and then again at 3:50. It was very difficult to understand him, but I got the message that he thought this was the end and wanted to say good bye and that he loved me. I never got back to sleep after that. I am getting to the point of debating about whether to tell him not to call unless he has some emergency, but I don’t want to prevent his calling if he really needs something. That does occur sometimes, but most of the time he simply wants to report that they haven’t brought him his breakfast or that nobody is around. I then tell him the reason is that it is the middle of the night and that he should just go back to sleep.
The point of my writing, however, is simply to say that I seem to be experiencing anxiety connected with all the things I have to do. Fortunately, business is better but I do have responsibilities for several other things – our music club, Rotary, the foundation, Sunday School, and another church responsibility I have just accepted. All that and being responsible for Kate and the household things as well as planning for Dad’s birthday party, our trip to NYC and our anniversary trip has made my plate pretty full.
Right now I am feeling like there are a number of things that I would like to comment on, but I also don’t feel I have sufficient time to devote to it now. Let’s see what I can do.
Follow up on the iPad. After getting the iPad, Kate spent a good bit of time on it. She was primarily playing free cell. When she got her computer back on Tuesday, she gravitated back to it. She is trying to complete her photographic piece on Brian’s trip to NYC. It is virtually complete, but as is characteristic of her, she can’t let it go. I also noticed the other night as she showed me what she has done that she has some photos out of order in terms of the way she wants to present them. Organizing things like this are a nightmare for her. I have offered to help her, and she has said she wants it but not now. For 3 days now she hasn’t even turned on the iPad.
I am reading Jan’s Story by Barry Peterson, CBS journalist whose wife has early onset Alzheimer’s. I discovered this book when I started looking about AD that I could download from audible.com. It is an interesting account of his experience with his wife and how they tried to adjust to her disease. I am about ¾ through right now and will finish over the weekend. I find it interesting simply because it is another person’s experience with a spouse with AD. I do find, however, that their situation, the way her symptoms occur, and his personality make this a different experience from my own. To be sure, there are commonalities – signs of forgetfulness and attempts to compensate or cover by the person with AD, denial that the person has the disease, etc. Here are a few quick observations. I may give others after finishing the book.
1. As his wife, Jan, goes through initial stages all the way to her being placed in a facility, there are striking symptoms that are serious in the early stages and normal kinds of behavior in the late stages. My observation of Kate is that the only dramatic thing I have been aware of in the earliest stages was her panic over being lost while driving someplace. Otherwise, it seems like she is going through a gradual decline in memory and ability to handle everyday tasks. I was surprised to learn that even when Jan went into a facility, she was able to appear somewhat normal to others apart from her husband. I am assuming that if and when Kate is in a facility, everyone will know of her condition.
2. It is easy to judge other people, but Barry seems to have let Jan live and function on her own a lot longer than I think he should have. I think she was well beyond where Kate is right now when he would travel out of the country leaving her alone. He did have friends come in to check her medications and see how she was doing. Right now I would be concerned about leaving Kate overnight. Of course, it is easy for me to judge since I am virtually retired, and Barry was younger and in the prime of his career.
3. I find his discussions of developing another relationship discomforting. I am aware that this is a topic of discussion among caregivers, but I don’t like to think of my doing this before Kate is gone.
4. The entire story makes me more comfortable keeping Kate’s AD from the world. We still have not told anyone except for our pastor, our attorney, and another attorney with State Farm who is representing me in a lawsuit over an accident from 2009. My reason for this is that if she is able to function well enough that people don’t know what good does it do to tell them. I do still wonder when we will tell the children. At the same time I think the answer is when they start seeing signs of her decline. I also feel like this is in Kate’s best interest. She doesn’t want to be a martyr nor does she want to be a leader in a campaign to promote greater awareness of the disease. She is a more private person. She just one to be a regular person.
Right now I am wondering what she will be like next summer and how our visits with our children and grandchildren will go. This week I booked a house in Jackson Hole where the 3 families will celebrate our 50th wedding anniversary next June. Will the children notice anything after a full week together? We will see.
Thursday afternoon I bought Kate an iPad since her computer is in the shop again, and it seems that her computer is really a lifeline for her. When she is not working on a particular task like photo albums, she likes to play free cell. She also likes to get her email. I keep thinking that an iPad will be easier for her to use since she likes to use the computer in bed which can cause some problems with the connection to the power cord. That is why the computer is in the shop now.
A couple of times today she has had a problem doing simple things on the iPad. She simply can’t remember how to do things that she has learned recently. This goes back to earlier comments that it is the short-term memory that is the greatest problem. I try to help, but she hates to ask for help. She has expressed a lot of frustration today over her inability to do so many normal things.
In this regard, I am now in the planning stages of a family trip next summer to celebrate our 50th anniversary. After much consideration, it looks like we are going to either Jackson Hole or nearer to Yellowstone. It looks like a rather expensive trip between lodging and airfare for all of us, but I feel like this is a must and will be the only time we do anything like this. I am still uncertain of what Kate’s condition will be like after next summer. That is why I have arranged for the Galapagos trip next spring and the summer trip to Yellowstone.
This summer was our best with grandchildren. Although we always enjoy having them visit us, for some reason this year seemed to be great in every way. Of course, the trip to NYC with Brian was a highlight, but we also enjoyed the twins as well as Taylor. They overlapped for 3 nights which made all 3 of them happy.
Taylor left a week ago yesterday. The following day I attended a symposium sponsored by the Alzheimer’s Association. Kate had received a brochure about it the weekend before and thought I might be interested in going. The focus was on understanding what life is like from the Alzhheimer’s patient’s point of view. I took her suggestion to mean that she might like me to attend; so I signed up.
Much of the information covered was repetitive, but it was good to hear what is currently going on in the field, medications, etc. The bottom line is that there are still no medications that clearly retard or cure the disease. One of the most interesting aspects of the program was a “virtual tour of Alzheimer’s. It was designed to give us the feeling that a person with AD feels. We put on goggles that blurred our vision, wore shoe inserts that had little prickly points, put us in a darkened room, and gave us quick instructions on tasks we were to do. It was hard to find items, we couldn’t remember the instructions, and general felt foolish and dumb.
That night as we went to dinner Kate asked me about the conference. I told her about the virtual tour, and she acknowledged that it was similar to the way she feels. We continue to see things that indicate the nature of the disease. One is that she doesn’t remember new things very well at all. That means if we decide to do something at one point during the day, she won’t remember it later. For example, we discussed getting a present for Jan Greeley whose birthday is today. They are due to arrive for lunch in the next hour or so. This morning when I mentioned the present for Jan, she had completely forgotten.
It has been a busy couple of weeks. Kate and I took Brian to New York July 17-21. We had a week to ourselves, and then we hosted the twins from Memphis. Yesterday afternoon we met Taylor at the airport in Nashville for a week’s stay. The twins are still with us and are actively having a good time. As soon as we got home last night, they played basketball, then took a swim, then watched the Olympics until just after 11:00.
During this same period of time, Dad has been getting along reasonably well. His latest challenge is a skin cancer on his right arm. We went to the dermatologist this week and found out it requires some careful attention. We had several options to choose from and have decided to take off the top crusty layer of the tumor and then go through radiation 3 days a week for several weeks. He is not in any great pain and is not experiencing any special emotional reactions to the procedure. He does continue to talk about his birthday party coming up on Oct. 20. I am feeling the pressure to get things organized, but that will have to await the departure of grandchildren.
In the meantime, Kate has enjoyed herself, but we continue to see signs of her Alzheimer’s. The other day she asked me for the umpteenth time how to view her pictures on her camera. I know she has hated to ask, but she increasingly doesn’t try to fool me about her memory. I am sure she does sometimes and suspect she is becoming more aware of how much help she requires. I really felt sad for her when she asked the most recent time she asked.
Recently she has said, “You’re so good to me.” I have several reactions to her comment. The first is again a sense of sadness for her. Another is one of guilt that I continue to lose patience with her at times.
Last night she asked me how to do something on her camera, and I showed her. Then she said, “You told me that before.” It was something that I didn’t recall her asking about and felt there was no reason for her to know; so I told her. She was so relieved, it was striking to me. I know she hates to encounter one instance after another in which she has asked about something but can’t remember it. I am continually running into numerous instances in which I have told her something, and a short time later she is unable to recall having been told.
This memory problem is an issue for the caregiver in that we frequently talk about events, issues, etc. in everyday conversation. It also limits the amount of conversation.