Late Saturday night Kate and I returned from Jackson Hole, Wyoming, where we had rented a house to celebrate our 50th anniversary with our children and grandchildren. Everyone was able to be there which is a very rare event. In fact, this is the first time all of us have been together for a full week. I am glad to report that it went swimmingly well – at least from our standpoint. I also believe the others had a great time as well.
I thought that Kate got along well. I suspect that no one may have been suspicious about her Alzheimers. She is more withdrawn than she used to be and did not pretend to help in the kitchen which could have been a clue. I guess I will find out when the day finally comes that we make it known to them. It would not surprise me that when that happens they will have already been suspicious.
This has made me reflect once again on the timing of telling them. From Kate’s standpoint, she would just as soon never tell. They would simply come to realize it the way I did with my mother. On the other hand, I has meant that I have been able to take advantage of our time together. I wouldn’t give anything for this time. We have been very conscious and deliberate about making the most of our time. The interesting thing is that despite Kate’s own frustrations over having AD, she thinks she will have more time than I believe she will have.
By the way, she commented on how caring Jesse and Greg were during the week. She wondered if I might not have told them. I told her that I hadn’t said a word. I think they were responding to the nature of the hiking trails we were on. We all noticed that she is less stable. They also know that she is geographically challenged.
Kate was quite careful to ask me for help when she needed something. For example, she didn’t know where any of the kitchen utensils were kept; so when she fixed her cereal in the morning she needed help identifying the right drawer. She asked me discretely, and I don’t think anyone noticed.
One reason I don’t think people noticed is that no one has said anything to me. If they know, surely they would say something to me.
I will write more later when I have a moment. I want to comment on the grandchildren and the letters I had for her.
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.
This past week our granddaughter from Tom has been with us from. It has been a great week with her. She has been an especially good companion for Kate. Throughout the week Kate has been impressed (as she has in the past) with Heather’s keen observance of things around her. She notices many things that we miss. I can’t help thinking, however, that this has been especially noticeable for Kate as her own memory declines. Two quick examples. Kate and I were looking for a picture I had taken of a Crowned Crane in Africa. It wasn’t long before Heather showed her the framed picture hanging on her wall in her office. Similarly, Kate had received a photo taken of Ken and her when they were young children. Kate commented that she already a copy of that picture but couldn’t recall what she had done with it. Not too much later, Heather showed her the picture that was displayed in our family room.
On a similar note, I was struck by a couple of things that Kate could not remember as she and Heather were preparing a special Father’s Day and birthday dinner for Dad and me. First, Kate asked me where we keep our placemats. Although we don’t eat at home much, we do get the placemats out often enough that I was surprised that she didn’t remember where they are kept. She also asked me where the spatulas are kept. A little less surprising is that she also asked where the blender was kept. This is less surprising in that I am the one most likely to use it. I use it regularly to blend soups for Dad.
We both thanked Heather for being with us and how helpful she had been. Heather commented on Kate’s forgetting things. I believe, however, that she doesn’t suspect the actual situation. She simply thinks of Kate as having a bad memory. This may be the story we see played out with the rest of the family.
Brian left last night after being here for a week. During the week that he was here, Kate exhibited periodic “fright/annoyance” at various loud noises he made. She repeatedly had to tell him to stop making certain noises. He always stopped, but would forget and make them again later.
Kate also had her most recent appointment with Dr. Reasoner on Wednesday afternoon. This time I did not go with her since I was taking care of Brian. I felt Kate would be all right by herself. I had suggested a few weeks ago that we postpone the appointment, but she wanted to go ahead. She found talking with Dr. Reasoner to be soothing. She likes her style of being forthright but in a sensitive manner. She doesn’t sugarcoat things.
On the way to the doctor’s office, Kate got lost and called the office for directions. They were quite understanding and got her there.
As we waited for Brian’s plane to leave last night, Kate asked for my help in arranging a time for her “Library Ladies” group to have lunch. It is her time to set the date and place. She just hadn’t done so and needed my help in figuring out when people could come. Several had sent her emails with possible dates, but she couldn’t manage to go through them and see what dates were best. Only 4 people had responded; so it wasn’t a big deal, but it was too difficult for her. I gave her the best dates, and she entered it in her iPhone. When we met for lunch she said she had been unable to locate the information and couldn’t remember it and asked for my help again. We went through it one more time, and this time I think it will work.
Her willingness to ask for my help is good but also makes me sad. She recognizes that she can’t keep things straight, so she needs help. This morning she sent me an email with 2 appointments for next week. She likes for me to put them on my calendar so that I can make sure she doesn’t forget.
On the positive side, I am amazed at how well she is accepting her condition. I know she has ups and downs, but, on the whole, she is doing remarkably well. Given her chronic depression, I would have thought this would be a much lower blow than it has been.
Today is Dad’s brother’s birthday. He and his wife, Elizabeth, and my brother, Scott, arrived here on Wednesday for a visit with Dad. All of them stayed at our house. They were all great guests, but it is more stressful for Kate to make plans and execute them. This is a pattern that has been developing over the past few years. Since we received her diagnosis, we have been working more deliberately to minimize stress. We did that this weekend by taking a meal from an Italian restaurant near Dad’s nursing facility on Wednesday night, bringing in meals on Thursday night and Saturday noon (when we celebrated Tom’s 80th birthday), and eating out Friday and Saturday nights.
In addition, I took care of breakfast each morning by bringing in bagels and muffins. I also got a mixture of fruit for Elizabeth on two mornings. I let Kate sleep as long as she wanted. That meant that she didn’t get up on Thursday or Friday morning until after our guests had left for Dad’s.
The weekend went well. We took note of some things that we wouldn’t have thought of before. For example, Wednesday night Tom told us about someone they had known who had AD and that she had wandered away from home and how frightened her family was. He mentioned that it might be good if AD patients had a chip like the one they use in dogs implanted in them so that they would be easily found. When we went to bed, Kate wanted to be held and comforted and mentioned something about Tom’s remark. I find myself holding back from saying things like this. Some of those are in reference to my mother’s dementia. Others are related to my father or someone else, In fact, Kate asked me recently how long Jane, one of her friends has had AD. When I told her about 12 years, she was bothered. I thought that would encourage her, but it was discouraging. I assume because Jane’s condition has been obvious for a few years (2-3?). I am sure it may have hit Kate in two ways. (1) It may only be a few years until her condition is obvious to others, and (2) she may live a long time in the latter condition, something she dreads.
In addition to the visit with family, we met with Kate’s psychologist on Wednesday afternoon to receive her evaluation. Although she had areas of strength, primarily verbal, she is functioning below normal in many areas for someone of her age and education. Dr. Taylor indicated evidence of mild dementia. Kate asked her if she had received the PET scan results, and she had not. We told her about the diagnosis. When we left, Kate said, “I could just cry.” This typifies most of her response to the diagnosis. She has not had any significant emotional outbursts. She is experiencing mostly a sadness and worry regarding the future. I am sure she must be thinking about time with grandchildren and missing out on important family events in the future.