I continue to struggle with when to tell the children about Kate’s diagnosis. I am strongly leaning toward telling them soon. In fact, a few moments ago, I started an email telling them I wanted to have a conference call with them sometime this week. As I played with the exact wording of the email and my schedule this week, I decided I wasn’t quite ready and deleted the message. Perhaps I will try again tomorrow or another day this week.
We had a great 100th birthday party for Dad on Saturday. A total of 94 people were at our house to help us celebrate. Dad was in rare form as I interviewed him about his life. The night before we had dinner with the family, and I also interviewed him for about 30-45 minutes. Yesterday Kevin and his family along with Ken and Virginia went out to visit Dad. He was still alert and able to talk and answer questions about his life.
I had received a call from Life Care on Friday night telling me they had diagnosed a blood clot in his lower left leg and were starting him on Lovenox. This morning around 6:20, I received a call from Life Care that his leg had continued to swell, that it had begun to blister, and that one of the blisters had popped. They felt he should go to the ER. I agreed; so here we are. It’s now 10:01 am. They have found that his white blood cell count is 20,000 and have requested antibiotics to address the problem. It looks like he will be here a few days.
Now for the second, and bigger, surprise. Yesterday afternoon Ken asked if I could take him to Lowe’s to get something for Kate. When we got in the car, he said there was another reason he wanted us to go out – that he wanted to talk with me about something. Then he said, that he and Virginia had noticed some differences in Kate. When he said that, I immediately choked up and couldn’t talk. As we started to drive away, he said that he had been diagnosed with dementia in April of this year. I choked up again and told him that I had wanted to let him know about Kate, but she didn’t want anyone to know.
After going to Lowe’s we went to Panera for coffee but especially to chat a bit. We decided to have a conversation with Kate and Virginia after we got home. At home he told Kate that he wanted to talk with the 2 of us a moment and broke the news to her. I never let her know that I already knew. Kate then told him that she has AD. That led to our bringing Virginia in to talk with us. We then had a good conversation for perhaps an hour. It was good to talk with them. I was the tearful one as usual. Ken, Virginia, and Kate seemed to handle things well.
Later Kate and I talked about feeling better that Ken had told us. Personally, I feel closer to them now that we have shared our information. I told Virginia this morning on the phone that we will walk this journey together.
This afternoon I dropped by Shirley Hazel’s house. Kate had left her computer in her car the other day. When I picked it up, Shirley said very nicely (as though she were trying to send me a message gently in case I didn’t know) that “”Kate is getting so forgetful.” I said, “I know.” Then she went on to say that she had enjoyed working with her. They work together to interview candidates for PEO grants to continue their college education. In addition to interviewing them, they also assist in getting the applications in to the national office and shepherding the applications to their completion. They have been successful several times. Furthermore, they have passed along the names of good candidates to other chapters who might nominate them. Each chapter is entitled to nominate only two candidates.
At any rate this is the first contact I have had with someone who mentioned the memory issue. Of course, that may have been what our pastor had in mind when he asked me if Kate were all right two summers ago. Although I feel confident that most people would not suspect that she has AD, I do recognize that anyone who works closely with her is bound to suspect. It makes me wonder again about our children when we are together in Jackson Hole in June. It would be easy for her to do or say something that would make them suspicious. I have even begun to wonder if I should break down and tell the children at some point after our vacation with them is over. I really don’t want to break my agreement with Kate that they not be told. On the other hand, they are not in touch a lot, and it would be nice if they knew that time is running out. In that respect, I am the luckiest person of all because I know and am able to make the very most of our time together. It has made all the difference in the world. Were it not for that knowledge I would probably be fuming a good bit over the many things she does. I clearly find some of these things annoying; however, I always stop and think that she can’t help it. That helps me to be more patient with her.
Once in a while I feel a little guilty about the way I respond to both Dad and Kate. Last night, for example, I had turned my cell phone on vibrate while we were attending our music club meeting. I forgot to turn it back to ringer when we returned home. This morning when I got up I noticed that I had missed 3 calls and had 3 voicemails from Dad – all around 11:30. He indicated that he was a little disoriented and was sitting on the side of the bed and could not find his call button. In his first voicemail, he said something about thinking he was in a kitchen somewhere. Although 99% of his calls involve no urgency or crisis, once in a while he needs something like last night when he couldn’t find his call button. Two nights in the past week or 10 days, he has placed 10 calls one night and 8 calls another. Most of these calls he doesn’t even say anything because he can’t hear anything said on my end. Nonetheless, I want him to feel that he can reach me when he is unable to get attention from the staff; so I feel guilty that I wasn’t available for him.
Similarly, I occasionally find myself not being as patient with Kate as I should be. In spite of her forgetfulness, she does remember a lot; so I tend to expect her to remember things that she doesn’t remember. The other day I asked her if she remembered some person or occasion from a few years back. She indicated that she had no memory of him/it and said, “”You forget I have Alzheimer’s.” Most of the time I do remember and don’t criticize or even point out her mistakes, but sometimes I give a response that shows I am treating her as though she does not have Alzheimer’s. I feel a tinge of guilt when this happens.
Late yesterday afternoon we went over to Panera Bread to get a bite before going to the music club. It was beautiful outside and we chose to eat at an outside table. We sat at the very same table we had sat at a few days ago. After sitting down, Kate said, “”This is the first time we have sat outside here.” I said, “”Do you want me to answer honestly?” She naturally said, yes.” I told her that we had just eaten outside a couple of days before. Then I felt guilty because I felt she had no choice but to say she wanted the truth but that giving her the truth did not serve any useful purpose.
The weekend was stressful. Kate had agreed to help with refreshments for Monday’s meeting of the music club. When she did this, I was concerned and suggested we purchase what we needed rather than prepare them ourselves. She felt she really wanted to make them herself. I notice there are a number of occasions when she wants to volunteer to do something like this when I think it is too stressful for her. It seems important to her, however, to retain as much of her ability to do things as she can. I can easily understand this, but what troubles me is that 1) I know I will need to help her and that will be difficult for me because they are usually things that are not my cup of tea and 2) she is going to be stressed in doing what she wants and has committed herself to do.
At any rate, as we go to the weekend, I told her I would go to the grocery store for her. Then I had to push her a little to actually get started with the cooking on Sunday afternoon. I was pushing especially hard because I wanted to accomplish as much as I could before going to see Dad and also because she wanted to attend a performance of Verdi’s Requiem Sunday night. She is very slow to move. This has been true for several years. In fact, she has never been sensitive to time. I now believe one of the consequences of Alzheimer’s is moving more slowly because the brain functions more slowly.
One of the first things that I noticed in cooking was that she let me take the lead in getting things done. That is very unnatural for us in that I am not and have never been a cook in the baking sense. Cooking meat on the grill is a different matter. Despite her wanting to do things for herself, when it gets down to getting it done, she has to depend on me. When she does this, I get the greatest sense of her having Alzheimer’s.
In other situations she does beautifully. For example, last night at the music club, I don’t think anyone would ever suspect that she has Alzheimer’s. She is able to converse quite naturally and confidently. It is only when she has to make her brain work – e.g., figure something out like quantities in a recipe the way we were doing Sunday. Sunday she put 2 cups of sugar in the crust for the lemon squares and the sugar was supposed to be in the lemon itself. Fortunately, the lemon squares were edible and people in general liked them, but the crust was crystalized sugar and not like it usually is. Before leaving the house on Monday morning, we tried to prepare praline cookies. I left just as she was putting them in the oven since I thought the recipe was simple and one she had prepared many times. It turned out that she had to throw away one cookie tray because she had overcooked them.
When we got home last night, she was able to unwind. She was happy that people had liked what she had prepared even if we did not think they were up to her standards. When we went to bed, she indicated that she was relaxed and did not plan to volunteer to something like that again. That certainly made me feel better.
We’ve had a good week, but yesterday there was a frustrating moment. Kate wanted to send Taylor a birthday card with a note that indicated we were giving him tickets for the baseball team and the hockey team. She worked for the better part of two hours trying to select an appropriate eCard and to enter the email addresses of Rachel and Kevin. She can’t remember their addresses and has Rachel’s address listed as Kevin’s. In addition to the memory issue she can’t seem to type information correctly; so she had to re-enter the addresses a number of times. Then she would ask me once again what their addresses are. I volunteered to do this for her, but she insisted that she would get it. It was as though she didn’t want to acknowledge that she couldn’t do it.
This led to her being somewhat depressed, and although we went out on the patio to chat and have a glass of wine, she never recovered. The day had ended in frustration.
This morning she sat down next to me on the island and was looking at the screen on my old computer. I was downloading files to put on my new computer. After I withdrew the flash drive, she picked up my computer and headed out of the kitchen. I asked what she was doing. She said she was going in the family room to work on the computer. I told her that computer was mine. Then she wanted to know where her computer was. I told her I did not know but would help her find it. She didn’t want help. In a few moments she had found it in the bathroom. This is a good illustration of how quickly she can forget. In this case she had been using her computer in the family room and got up to go to the bathroom putting her computer down on the bathroom counter. Then she came out and forgot that she had taken it there. It also shows how poorly she is able to discriminate among different things. In this case my old computer versus her new one.
When do we tell the kids?
We haven’t talked in a while about telling Jesse and Kevin about her Alzheimer’s. She was far from ready to tell them or anyone else the last time we spoke which was several months ago. She prefers not to tell them until we have to do so, or when it becomes obvious. I suspect that these events will occur at the same time. That will also be what happens with friends and acquaintances as well. There will be a point when everyone already knows or suspects. Then we can acknowledge the situation. Until then, we just keep everything to ourselves.
Note about Dad
Yesterday Kate and I took Dad to the Kiwanis spring luncheon. He looked sharp in his pin stripe suit and tie. He also seemed to enjoy himself although I can tell he experiences frustration in group situations like this where he unable to hear or follow everything (or anything) that is said. Nonetheless, I think it was good for him to get out. He still finds himself energized by the presence of other people.
Before we left Mountain Valley after returning Dad, we spoke with Dad’s speech therapist. I asked her about the upcoming Prom Night . She said that she is going to be there with Dad for the occasion. I was pleased because that occurs at a time we will be in Arkansasfor Dorothy’s wedding. She loves him so much that I won’t think of this as an imposition, and, of course, it will be good for Dad.
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.
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.