Kate and I got to bed early last night (8:45). I knew I would wake up early. I just didn’t know it would be 3:30. I tried to get back to sleep but my mind kept thinking about Kate’s condition and the problem of her clothes and getting ready to go places. It makes me think that next summer life will be different for us. Since her diagnosis January 21, 2011, I have wondered how much time we have left when we can live a reasonably normal life. I am now seeing signs of the beginning of the end. I must admit that it frightens me.
We went in the pool around 6:30 last night. As we talked, she mentioned wanting to go to Ireland. We discussed doing that in early June 2015. Reflecting on that now, I am not at all sure that will work. If we go with a group, we will face the problem of needing to meet daily schedules that are likely to cause more panic attacks for her. If we go on our own, we face the challenges of travel from one location to another as I don’t think we can find a single location that will let us take day trips to all the places we would want to see. Being realistic, of course, it would be another trip like New Zealand in that we would go without any intention of seeing or doing everything. We could just find a place and stay there. I will do my research and come up with something.
We have often talked about staying at Chautauqua for two weeks rather than just one. Next summer could be the time. I had better look into that soon in order to get the accommodations.
I finally got up at 4:30. I figured that I could accomplish something rather than just lying in bed. It is now 5:05; so it is not far different from a rather normal waking time for me. I will probably shave and eat breakfast and then go for a walk around 6:00. That will still give me time to read the paper before we go to church.
As we were getting ready to go to a funeral service for a neighbor this morning, Kate had another breakdown (panic attack) as she was trying to find something to wear. She cried uncontrollably for 15-20 minutes. It is difficult to locate things because she tends to throw her clothes on the floor or somewhere else when she takes them off. I have mentioned a number of times that our biggest crises are in getting ready to go somewhere and her getting dressed. I was almost in tears as well as she struggled to find what she wanted/needed and was feeling horrible about her inability to find things.
As we were coming home after lunch we talked about working together to arrange her clothes so that they would be easier to locate.
Last night we were going out to eat. As I was getting ready, I thought about Kate’s new clothes that we bought several months ago and that she has not been wearing. (I think she simply doesn’t remember she has them.) I called to her and went to her bathroom where she was starting to get ready. When I called she answered with irritation. She wanted to know what I wanted. Before I could begin to explain, I could see that she was breathing more heavily than normal and appeared stressed. She went on to say she just wanted to be ready on time and that she was having to work so hard to please me. She walked away from me. I spoke to her in a gentle voice so as not to further aggravate her and told her that I was just thinking she might want to see if her new clothes would be something she would want to wear. Then I left to get ready myself. When she had dressed, it turns out that she found a new dress and jacket. She looked great. She was also in a good humor.
This experience was the most striking example of the stress she experiences when we are going places. It was more than just a panic attack this time. It was almost as if she were frightened of me as if I was going to abuse her. This frightened me. The last thing I want is for her to think of me as her master. I will write more later to explain that earlier in the day we had had an experience buying more plants in which I had been bothered, and she picked up on it.
As the previous post indicated, we had a great time in Chicago. Kate, in particular, enjoyed being with Brian and especially enjoyed my interaction with him. I don’t think there was anything noteworthy about that interaction. I look at her reaction as another indication of how impressed she is with the things that other people do quite normally that for her are becoming difficult. She thinks many of the people she is around are very intelligent and skilled in many areas. She believes Brian is quite observant because he notices things that she doesn’t notice. One of the things she is losing is the ability to notice things around her. She misses so much; however, that doesn’t keep her from enjoying travel and doing things like attending shows and movies. She also felt that I did a good job of explaining things to Brian. I was, indeed, attempting to teach him things without being too pedantic. For Kate, this was something she can’t envision herself doing. In fact, when she tries to explain things to the grandchildren or anybody else, I can tell that she works very hard to make a clear expression of her thoughts. It is getting harder and harder to express herself.
Lest I paint too glowing an impression of the way that I handle things, especially with Kate, I should point out that Kate told me yesterday that I said something that I should not have said and that there was no reason to say that. After she said she didn’t know something, I had told her that I had told her the day before. That is like saying, “Do you remember . . .?” That is also something she has asked me not to say. Something else occurred today, but it was not a big issue. When she was looking for her computer, I told her that I had taken it to the shop for servicing before we left for Chicago. As it turns out, I had told her, but she had forgotten which is not surprising since that was a week ago yesterday. I did not tell her I had told her before, but I did say that I was sorry to have caused her some distress. She said she wasn’t distressed, she just wanted to know where her computer was and that I should have told her (which I had but didn’t want to say so).
The final thing that I believe is important to say about our trip home is that she was very eager to be back home. She repeatedly expressed how much she wanted to be home. When we finally arrived at the airport, she had a hard time moving quickly off the plane. She was just whipped and emotionally drained.
We are having a grand time in Chicago with Brian. Today begins our third day, and we have been busy. Here are a few observations about Kate.
She has enjoyed herself. I have been trying to see that she doesn’t get out of my sight for fear of losing her. Yesterday I slipped when we got off the train in front of our hotel. I led Brian and Kate across the street. I looked back and saw Brian and assumed incorrectly that Kate was right behind. When we got in the hotel lobby, I looked around and she was not with us. I rushed back outside and she was waiting on the street corner where we had gotten off the train. I later asked if she realized she was across the street from the hotel, she said no.
A couple of other things are both sad and cute. When we were walking to Tommy Gun’s Garage Friday night, we passed the Sommerset Hotel. It had a plaque that indicated it was built in 1889. I pointed this out to Brian and Kate. The next day we walked past the same spot. Kate noticed it and pointed it out to Brian and me. I didn’t say anything about having shown this to her the day before.
This morning I had a long phone conversation about Kate with Scott and Jan. This was a follow up to my conversation with Scott on Wednesday afternoon. They indicated they had suspected something after our April visit. They couldn’t put their fingers on it, but something was different. On Wednesday all they could point to was a slight hesitation in responding to questions. They were very supportive and wanted to know how she responded to our visit. I told them it had been her therapy and mine as well. I also suggested we get together as often as we are able. We decided to get back together after they return from Africa and we return from our cruise in October.
Yesterday at the dentist, I told my dentist. His mother has Alzheimer’s but is further along than Kate. He asked if he could tell his dad (my former dentist) and indicated that he would be glad to talk with me if I were interested. So that brings the number of people who definitely know through me to our pastor, Virginia and Ken, one of the secretaries at church, our children, a couple we met at Chautauqua, my staff, the Greeleys, and my dentist. I also suspect that some or all of Kate’s PEO sisters know.
So how am I feeling about letting the cat out of the bag with more people? I have experienced a little guilt because I feel I have betrayed Kate. On the other hand, it has been a relief to me to share this secret that I have been holding back for so long. My guilt is relieved by the recognition that in the long run Kate will find herself in a situation in which everyone around her knows about her Alzheimer’s, but she doesn’t know they know. What I have feared is that she will learn that I have told someone and that she will be hurt by it.
After picking up Kate at the end of her PEO meeting, we stopped for lunch. While we were eating, I started to tell her something that I had heard from my dental hygienist this morning. I told Kate she was going to interview someone in Memphis about their experience with embryo adoption. She went on to say there were all these fertilized embryos that were frozen and stored in the clinics where couples had had in vitro fertilization. There is a movement to do something positive about them. I was about to tell Kate more when she had a problem with acid reflux; so I stopped. She had trouble recovering. We ended up leaving and heading home. When we were halfway home, she said that she had recovered. I asked if I could continue my story. She said yes. I said, “So my hygienist was going to interview this couple who has adopted an embryo.” Kate immediately said, “At PEO this morning somebody told me about that. They have a lot of embryos that could be used for people who can’t have a baby on their own.” I am sure she had simply forgotten that I was the one who told her this, not someone at PEO. This is another good example of the deterioration of her short term memory. I am also noticing problems with longer term memory as well, but it is the short term that seems especially weak.
Yesterday Kate and I went to Nashville for a visit with Scott and Jan Greeley. We had a really good day. Kate and I love being with them. For Kate, the relationship with Scott is probably the longest-standing one she has. Their mothers were pregnant at the same time and remained friends thereafter.
I considered calling Scott and Jan to let them know about Kate’s Alzheimer’s but didn’t. In fact, I had considered doing so immediately following their last visit with us this past April but never did. Late yesterday afternoon Scott rode in the car with me to a Japanese restaurant while Kate rode with Jan. It was only a few minutes to the restaurant, and Scott asked how we were getting along health wise. I told him I had to hit him so abruptly, but that “Kate has Alzheimer’s.” He asked a couple of the usual questions like “How long?” “Have you considered any support groups?” I told him what I could in a short time. When we left the restaurant I told him I would like to call him to follow up on our conversation. He said to call when Jan would be available. This morning I sent an email asking when would be a good time. We set up tomorrow morning after I get to the office following my trip to the Y.
Today I had a routine dental appointment. His father was my dentist until his retirement 5-7 years ago. I always ask about him and his wife. After getting an update I told the dentist that Kate has Alzheimer’s and that we are several years behind his parents on this journey. He encouraged me to call his father and was going to tell his dad about Kate. That means I have added quite a number of people to the list of those who know about Kate. What I see is a natural process in which more people become aware of our situation. It isn’t something that I planned some time ago. It is just unfolding as I have felt the need or a situation presented itself.
Kate went to her monthly PEO meeting this morning. I am wondering if I should say something to them. As I have noted earlier, I suspect they know already. At least two members of the club have said something to me that suggests they know. If they know, I have to believe the rest of the club knows. At any rate, all of this signals a time period in which we are moving into a more serious stage of the disease. I still remain optimistic that we have many good experiences ahead. Yet I am l also facing the reality that the good times are growing shorter. That adds a measure of anxiety for me.
For a long time I have kept Kate’s diagnosis a secret from all but our pastor. Before we went to New Zealand, I told the children. In May I told two of my email buddies and and Kate’s best friend, Ellen. As mentioned in earlier posts, I had been debating on telling the staff. Last week I told someone we met at Chautauqua two years ago. We enjoyed our conversations and have talked about getting together again. In fact, we have now arranged to meet in NYC when we go there to catch our ship for New England and Canada the first of October.
Finally, I decided to tell the staff on last Wednesday. They were just finishing their morning conversation upon arriving for work. I went in and asked if we could chat a moment. They quickly sensed it wasn’t an ordinary conversation. As I started to tell them about Kate, I choked up. It took me some time to gain control of myself but surprised myself by being so emotional about this. I never expected to react this way. After all, we have dealt with this for 3 ½ years. There is a common pattern here. When our pastor asked me if Kate were all right, I immediately choked up and had to gather my composure before answering him. When Ken asked me the same question, I choked up. I guess it should be no surprise that I did the same with the staff. The reality is that Kate’s illness has not only introduced stress for her, but it has done the same for me. In particular, I think that not talking about it is a little like people say. Things get bottled up inside and finally express themselves at some point. All-in-all I am glad that I have now told a few people about Kate. It should come more easily in the future although I want to be careful that she is not aware that everyone knows. Right now I am wondering about telling Scott and Jan Greeley. We are planning a visit to their home this coming Wednesday.
Kate continues to adjust rather well from a psychological standpoint. She doesn’t typically convey any sense of frustration or depression. It is only in moments when she has trouble with clothes and getting ready to go out that we have a crisis. In that regard, our shopping trip for casual clothes this past week worked wonders. She was excited about what she got – about 5 pair of pants, at least that many tops, and a pair of shoes. I feel good that she has a variety of things to wear that fit and that she likes. That should make dressing much smoother in the months ahead.
She continues to express positively in many situations. For example, I have gotten used to her saying many things are “perfect.” She was enthusiastic about her lunch at today. The other night at Chalupas she couldn’t say enough good things about her cheese quesadilla and her cheese burrito. I spoke with Kevin the other night after she was in bed, but I turned on the speaker. After we hung up, she said, “Kevin is so smart.” She expressed great satisfaction in the way he was handling his work. She is so proud. I love this adjustment to things. It is not universal, but it is very common.
A week ago, today Kate had the bad experience with one of our former associate pastors. This morning she expressed an interest in going back to his church. We went, and she had a better experience. She exercised a little initiative when she told she wasn’t going to leave without a hug. He delivered. I don’t think she actually forgot about last week’s experience, but I do think it faded into the background so that it didn’t bother her in a way that it might have done if she did not have Alzheimer’s.