I took a call from Kate about an hour ago. She was calling from the hair dresser’s to tell me that she had locked herself out of the house and would need to stop by the office to get a key. She also said that she had forgotten her hair appointment again and that Evelyn’s daughter had had to call her to come in. Kate has mentioned before that she thought they suspected her AD. I suspect ongoing behavior is confirming it.
I find it interesting that she is able to take a humorous approach to this instance of forgetting. It makes me think of my dad who is responding similarly. I feel like this is a further sign of the progression of the illness that instead of expressing frustration, she is able to laugh about it and make no effort to hide her forgetfulness.
No need to go into many specifics, but it is clear that Kate is having more difficulty remembering things. This usually involves where she leaves her iPhone, her purse, or an item of clothing. What I find more disturbing is that her organizational ability is declining. Last night we sat outside for a while and then got in the spa. She commented that she is trying to concentrate on those things that don’t require a lot of thought. Anything that requires her to put together a sequence of things seems to be a problem. That would include getting dinner ready, getting things together for a meeting like PEO, and especially the family album. I can hardly wait for her to finish. For a while I thought it was good that she had something like this to focus on. She loves it, but she faces many frustrations. I am confident that a good bit of the problem involves her condition, although certainly working with a new piece of software brings its own problems.
Right now the plan is that she will not be working on another album with her brother. It is too stressful for her to coordinate with another person. She is going to work on albums for our own family and grandchildren. She has already started getting organized for these by going through many of our old photos and arranging them into categories. There will be no timeline which will be a good thing. Even though her brother has been very understanding, she feels pressure to complete the project ASAP. I am hoping the next 2 weeks will end her part.
I should also mention that I have noticed her own discouragement, although when I used this word last night, she corrected me. She felt that was too strong an expression for her current state. Nonetheless, she sees all the little things that are signs of her slipping.
I forgot to mention that last week Kate told me about the University of Tennessee women’s basketball coach who at 59 has announced that she has dementia. That provided an opening for me to ask if she had thought about when and how she might tell our children or others of her diagnosis. She said she felt she wanted to tell the children but that she saw that as something that was a year away. I suggested that, because we were not with the children very much, they would probably not suspect anything for a while. I then asked her what she would want me to do if either of the children asked me about her. She said she would want me to tell them. Actually, I don’t think she was that specific. I think I would probably try to open the door for her to tell them.
I also asked her what she would want me to do if someone outside the family asked me about her. She said that was another story with the clear implications that she wasn’t ready to announce.
She also indicated that there would be no necessity of a more public announcement. She feels, and I agree, these are things that are done by celebrities. We both are inclined, I think, to let this evolve naturally without having a defined time to tell others. I believe this is the way that most people handle it.
Last week we took our granddaughter back to Nashville to catch her plane to Houston. We both felt we had had a great visit with her. At the same time we recognized that we focus so much on her and the other grandchildren while they are here, that we get behind on other things. We stopped for dinner on the way home. We talked about our aging and how much we value our time together. We wonder how much longer we will be able to do the one-week vacation with each grandchild.
This past Saturday I selected 600 slides to send to ScanCafe.com for them to scan. I am trying to convert our slides to digital. As I was going through them, I became very nostalgic. I found myself reflecting on our time together in Madison, the move to Raleigh, and Jesse’s birth. Those were such special times for us. I couldn’t help feeling sad as I thought about the path on which we are now headed. This rekindled my more intense feelings about making the most of our time together in the weeks surrounding Kate’s diagnosis in January.
I am also noticing what I believe is a continuing decline in her condition. It is not great, but it seems like there are so many little things that occur that wouldn’t happen if she did not have AD. I am in a sad mood. This comes as I am also seeing a decline in Dad’s condition and a worsening of business conditions. It is a stressful time.
Yesterday Kate and I both recognized signs of confusion and inability to do everyday things. She couldn’t find her shirt that was on the back of a chair in the kitchen, she couldn’t find the power cord for the computer, she couldn’t handle some minor printing issues. At one point she said, “We know I’m getting worse.” I tried to comfort her, but there are aspects of this that I know are so personal that I am unable to relieve her burden only ease it.
This past Thursday a significant event occurred. I had lunch with our pastor who had scheduled the lunch about 3 weeks earlier. I thought this was a bit unusual, and he indicated that he had no special agenda. He just wanted to get together.
We chatted a long time, and finally, he asked, “Is everything all right with Kate?” It hit me like a ton of bricks. Tears came to my eyes, and I was unable to speak for some time. It seemed like forever but must have been no more than a minute. Before I could answer, he said, “I think you’ve answered my question.” Choked with emotion, I said, “She has Alzheimer’s”
I asked why he had asked. He told me that a couple of people had sensed that something was wrong. He told me two people in particular had been concerned, his wife and a staff member.
I told him we had been very quiet about her diagnosis and that he was the first person other than her doctor that we had spoken to about it. I told him that we had received the diagnosis in January but that we had suspected it for some time. I also asked that he keep this confidential as Kate was not ready for this to be public. He said that he would do so. I also told him that I did not plan to tell Kate of our conversation.
Now that a few days have passed and I have had time to think a little more, I am inclined to tell Kate but to do so after our granddaughter, who is visiting from Houston, has left. I have not wanted to add to her worry while Heather was here. We take her back to Nashville on Wednesday to catch her plane home. At an appropriate time after that I will let her know. She has wanted her doctor to be honest with her, and I feel that she may want me to do the same.
We arrived back from Chautauqua late Saturday night after a great week. I do think it was a week of some frustrations for Kate and arousal of my concerns for her. She repeatedly misplaced things and forgot things. It makes me wonder what things will be like when we are here next year. I still want to be hopeful that we have a long time together before we enter the more serious stage of the disease, but I just don’t know. It will be interesting to see how we do in Africa the first two weeks of January.
The funny thing is that I had intended to write this note a couple of days ago and now find that I am unable to remember the specific instances of memory problems she encountered during the week. If I think of them later, I will come back.
We are still at Chautauqua, and I sense this has been a tough week for Kate. She told me a couple of days ago that she is a basket case. After I gave her a second toothbrush yesterday (she failed to bring one with her, and I had given her an extra that I carry for that purpose), she also made a remark that a friend whose husband died of AD, told her it only gets worse.
She continues to work on fer family album, a project that should have been completed long ago. To her credit, she is also editing some of the work that her brother had done; however, I am confident that given her mental state, she is taking 3-4 times as long as she should to complete everything.
I have also noticed that she has seemed more needy in the sense of wanting to be close. We were to meet in the Amphitheater for the morning lecture yesterday. I never saw her come in, and she did not see me. When it was over, I waited for her to come out. When I didn’t see her I came back to our room. She finally arrived and was panicked because she had not been able to find me. I am thinking this is one of the early signs of fearing to be out of my sight.