Last night after leaving the visitation for a church friend, Kate and I planned to meet at Panera Bread. This followed a terrible thunderstorm during the visitation. As we came back toward Panera, she and I got separated (we were in separate cars). The power was out along the street leading to our home. I went home to wait and then went back out to look for her. Before going too far, I got a phone call from Kate saying she was at Chalupas; so I went to join her. I discovered that she had thought I had said we would go to Chalupes if Panera was not open (which I had not said at all). When I got there, she told me she had accidentally gone past the restaurant and realized it sometime down the road and had to turn back. In turning around she had run over a curb and thought she might have damaged the car (though I don’t see any signs of damage).
Over dinner she told me she is beginning to lose confidence. I assured her that the confusion of the night and weather conditions made it difficult to see (which was true) and that it could have happened to anyone. She understands that, but I could tell she still thinks part of the problem is AD. She is seeing more and more signs of it as am I.
This Wednesday it will have been 8 months since our meeting with Dr. Reasoner when she diagnosed Kate with AD. We have both adapted well, although we continue to have our moments of melancholy. I am convinced, and I believe Kate is as well, that she is declining more rapidly than we had hoped given that Dr. Reasoner described her condition as early onset AD. There are little things like operating the TV that seem to be more confusing than in the past. She has to ask me to help her with many routine tasks. Yesterday, she asked me how to operate the TV in our bedroom with the new DVD player that permits us to stream movies from Netflix. I think she would have had trouble with that without the AD. Then after I had shown her, she asked if I would show her how to turn on the TV in her office. Before I could do that she had done it herself. I can’t recall the exact conversation but in the latter part of the process of showing her how to operate the TV (which I know she will not remember) she said, “Well, remember I do have Alzheimer’s.” I said that I know but sometimes forget. She said, “Most of the time I do too.”
There are 2 other recent illustrations of her asking for help. She misplaced her shovel someplace outside and asked me to help her find it. We walked around the flower beds in the backyard. In a moment, she saw the shovel right after I had walked by it and didn’t notice it.
Yesterday afternoon she asked me if I would help her find a new plant that she had purchased on Saturday but couldn’t remember where she planted it. I walked around the flower beds again and found it. A little later she asked me where the plant was. I told her, and she remembered.
These are the kinds of things that don’t get noticed by most people since normal interactions involve such routine things that she can do almost reflexively. I think this is fortunate because I don’t want a lot of people to know about her condition, and, as I have mentioned before, she doesn’t either.
The fact that her deterioration over the past 8 months is noticeable makes me concerned about the future — for example, a trip to New Zealand in the winter of 2013. I am beginning to think that we will want to make the most of 2012. I don’t really think we will have to stop traveling after 2012, but it will be different if her condition continues to decline at the present rate.
I do find that I feel a greater need to be with her and to enjoy our time together. We both enjoy snuggling in bed and taking moments together with a glass of wine out on the patio. Without saying it, we both want to make the most of the time we have remaining. I am hoping it is longer than I am presently thinking. I recall a friend’s saying a good while after his wife had been diagnosed with AD that they were able to enjoy conversations together.
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.
We are in Jamestown, NY, having flown here (Buffalo then car to Jamestown) for our annual trip to Chautauqua. We will meet one of Kate’s PEO sisters who lived in Knoxville for a number of years. I thought of a couple of things. First, I did not mention that on Thursday of this week (7/28/2011), I was at lunch with someone from our church when I received a call from Kate. She was lost. She was in the car and had intended to drive to a neighbor’s house which is just around the corner from our house, but she didn’t remember exactly where it was. She wasn’t far from home or our neighbor’s house when she called. She seemed in a panic. She was able to tell me the street she was on. She followed my directions and got there. Later I learned that she was the first to arrive which relieved her.
Kate is directionally-challenged; so it is not surprising that she could get lost; however, since she was just going a very short distance to a location near where we have lived for 25 years, I take this as another indication of her AD.
I don’t know that I have commented on this before, but we have gone through numerous such experiences over the past couple of years. On one occasion she missed a PEO meeting she was going to because she traveled around so long she was embarrassed to show up. She just called to say that she could not make it.
I should also mention that Kate has been working on a one-page flyer to mail out to PEOs in the Knoxville area inviting them to a book chat with an author. She has had this essentially finished since Monday or Tuesday but has had to make some edits based on suggestions from a sister PEO. The point is that this is a small task, but it has taken her an inordinate amount of time because of simple mistakes. She has indicated losing a number of things that I think are text boxes. I know that the problems she has had with the family album she is working on with her brother are largely a function of problems like this. She doesn’t remember how to do things, how to correct things, and generally digs herself in deeper as she works. It is like 2 steps forward and 1 step backward which makes her very frustrated.