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.
More Significant Happenings
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.
Being More Open
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.
Ellen’s Noticing Confusion
Yesterday at Chautauqua, Ellen told me that the day before Kate had pointed to a place on Bestor Plaza and said that it was a nice shop and that she had bought things there before. Ellen and Gordon’s sister, Ann, went there and discovered that it was someone’s house.
I observed a number of things that Kate told people during the week that I knew were not correct. They were all minor things. In such cases, I don’t say anything. It would only make Kate feel bad, and it wouldn’t make any difference to the listener. I wish I always exercised good judgment, but I find that when it is just the two of us I seem to be more prone to correct her.
Lost and Found
After the morning lecture yesterday, Kate was hungry. I got her a melon tart to tide her over until we got to lunch. I took her to a bench outside The Amp and told her to sit there while I took our cushions back to the room. When I returned, she was gone. I looked all over. When I saw Ellen and Ann, I told them to go to Hurlbut Church, and we would meet them. Ellen called to say that Kate was at the church already. I was relieved, but the frightening thing is that she had forgotten in the short time that I was coming back for her. When I reached her at the church, I didn’t say anything.
Today she left the Hall of Christ where we were going to watch Bishop Spong on a closed circuit TV presentation. She got up to use the restroom and never came back. An hour and a half later, she arrived on the front porch of our hotel. I had been looking all over for her during an hour of that time. So had Ellen and Ann. When I reached her on the porch, I said that she must have been walking around the grounds. She said, “You know me and directions.”
Good times at CHQ
We arrived at Chautauqua last evening just in time to walk to The Amphitheater for the night’s entertainment. A Swedish group performed the music of ABBA whose music was featured in the movie and stage production of Mamma Mia. We enjoyed it, Kate especially. I told her I had never seen her express the same degree of enthusiasm for the Knoxville Symphony.
We got to bed later than usual because the performance wasn’t over until nearly 10:00. This was three nights in a row. It was hard for Kate to get up. It was 9:00 before she got to breakfast. After breakfast, she went back up to the room to rest some more. I have noticed that over the past year or so she has been sleeping more. Usually that involves going to bed as early as 8:00; so the change in the schedule really affects her.
It has been a good day here. She has enjoyed herself but has been hot and is resting in bed right now. We had lunch with friends from Long Island and ended up spending most of the afternoon with them. I noticed that Kate gives some misinformation or fails to pick up on things in our conversations. I know this is one of those things that will only get worse.
Meltdown and Recovery
This morning we leave Niagara-on-the-Lake for Chautauqua after a very pleasant 2-day stay. Everything had gone beautifully until last evening as we were preparing to go to dinner and a play. Here’s the story.
First, we had a big breakfast at our B&B finishing close to 10:00. When we came back to the room, Kate got back in the bed to rest a little while. She got up for us to meet Ellen Seacrest and her sister-in-law, Ann, for lunch at 12:15. That meant we ate lunch before our stomachs were ready for more food. After lunch, we. Went to a play at 2:00. When we got out after 4:00, we got ice cream. Then we came back to the room for Kate to rest a while before our dinner reservations at 6:30. She was stuffed and didn’t feel like eating, but we needed to eat before the play at 8:00.
As she was trying to find something to wear, I got up from my chair and my phone fell on the wooden floor. The noise frightened her, and she said something like, “Don’t do that.” I said, “I didn’t mean to do it.” Then she immediately broke down into tears and heavy breathing as if she were having what I call a panic attack. She told me she knew I would never scare her on purpose. She couldn’t stop crying and continued to breathe heavily. I tried to calm her down by putting my arms around her and holding her, but that didn’t seem to help. She went into the bathroom to put on her lipstick. I followed her and rubbed her back and started playing some soft music on my phone. As she continued to cry, she said, “my mind is going. The medicine is not working.” I held her tightly. She lay back down in to calm herself. She must have cried a total of 15 minutes. This was the biggest breakdown she has had.
For me this was a sign that she hasn’t deteriorated so much that she is unaware of her decline. I was moved by the anguish she expressed and couldn’t help thinking about how much of this she carries with her all the time without my being aware. If I can’t fully grasp the extent of her suffering, how could anyone else do so?
After she had calmed down and we prepared to leave, she commented that she was all right now, that she has just broken down. She went on to say that she thought that she normally is able to control herself better. Moments like this reinforce my efforts to avoid making her feel “not good” to quote a friend of mine. This is his advice for everyone in all situations. That is a special problem to avoid with Kate and, I believe, with other Alzheimer’s patients.
Birthday and Preparations for Chautauqua
Today is my 74th birthday. It looks like a day of getting ready for the trip to Chautauqua. We leave Thursday morning.
Kate appears to have forgotten that it is my birthday. I will think of some way to let her know without making her feel bad that she has forgotten. I may remind her that we are planning to go to a movie as part of our celebration. I told her we would also look for clothes she might need at Chautauqua.
On the way back from Nashville yesterday afternoon, I asked what she would think if we took Jesse and the twins along with Kevin and Taylor to New York next summer. She liked the idea.
Another Good Father’s Day
Yesterday was a good day for everyone. Taylor slept until after 10:00 am, and Kate worked in the yard most of the morning. I read the paper, caught up on email, and wrote an entry in this journal. Taylor and I played in the pool for about an hour. We had lunch at Panera’s and got ice cream at Marble Slab afterwards. We came back home where Kate and Taylor worked puzzles for a while before we went back in the pool until time for dinner. We came home and watched the Spurs beat the Heat to win the NBA championship for the second time in a row. Last year we watched the final game in Jackson Hole where we celebrated our 50th anniversary.
Kate did not say anything about its being Father’s Day, but she did realize when Jesse called, and later we talked with Kevin. As we drove back from dinner, she said, “I hope you’ve had a nice birthday.” I told her that I get to celebrate twice this week, today for Father’s Day and Tuesday for my birthday. I am not sure she understood. When we got into bed last night, she said, “Happy Birthday.” The only sadness I feel about her is that it is another sign of her continuing deterioration.
A couple of other things are illustrative of her condition. She asked me several times yesterday what time we would leave for Charlotte today (to take Taylor to the airport). I wouldn’t be surprised if she doesn’t ask again this morning.
As we were about to leave Panera’s yesterday, she asked if we could drive home the other way to show Taylor. I told her we could. After we had gone a short way, Taylor said, “How far is it?” She said it was not far, just a little bit farther than the usual way. (I watched the odometer and noticed that it is 2 miles farther.) When we passed Panera’s, Taylor asked, “Did we just go in a circle?” Kate answered, “Well, . . . you might say that.” Then she asked me if that is correct. I told her it was. What was interesting was that Taylor at age 11 very quickly observed that we just went in a circle, but she had not and had to check with me to confirm it.
I continue to be pleased that she enjoys the grandchildren so much and will definitely be thinking about some kind of plans for us to get together over the next year and next summer.
Our yard is looking better all the time. This is another thing from which she can derive satisfaction. I love it because it gives her something productive to do, and I love the beauty she has created. She doesn’t always do things the way I would (if I did them at all), but overall she makes the yard look more beautiful. That makes both of us happy.
Fun with the Texas Grandson
Now that the twins have gone we are down to one grandson, but the fun continues. Kate has always, and continues, to enjoy being around the grandchildren. This year is no different. We had a good day with Taylor yesterday. We swam in the morning, went to Chick-fil-A for lunch, saw a movie, had ice cream at Marble Slab, came back home for another swim, went to dinner, and topped off the day with a game of Battle which he won.
The enjoyment that Kate has gotten from the grandchildren is making me think more seriously of planning something for next summer even if we don’t have them one at a time. The reason I am not considering having them one at a time is that I am not sure that I can handle both Kate and the grandchildren. On the other hand, if she is still as easy to care for as she is now, we could do it another summer.
We loved the movie yesterday. At least I did. Taylor said he thought it was interesting. Kate wasn’t taken with it at all. It was Million Dollar Arm. It is about a sports agent who brings a couple of guys from India to the US to learn how to pitch. It is based on a true story, but Kate did not realize it until the end when they showed the real people. I had read her the description of the movie before going, but not surprisingly she didn’t get the part about the “true” part. I never thought to emphasize that to her. In fact, I didn’t think of that as a critical part. It was just a good story. This is the kind of thing that happens every day. I try to prepare her for things, but I just can’t anticipate what is going on in her mind. Nevertheless, I always try to think what I could have done to avoid confusion. It is similar to her panic when she couldn’t find me at Great Wolf the other day. I never thought she would be confused about my whereabouts, or I would have clearly told her I was going with the grandchildren and would be back. I thought she heard the conversation and saw me leave. It is a sign that she is not even listening much of the time. It must be such a strain trying to follow everything that is said and going on. She just tunes out.
