In my earlier post today I neglected to say that we got off on a bad start when Kate was getting ready to go with me to the Y breakfast. She got up early (5:30) and had plenty of time, but she stayed in the bedroom on her computer and or iPad until 30 minutes before our departure time. Then she had a hard time finding clothes to wear including undergarments. This frustrated her but led to her feeling frustrated with her Alzheimer’s symptoms.
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.
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.
Tomorrow we will celebrate our 51st anniversary. We hadn’t planned to do is anything special, but earlier this week I decided it might be nice to drive to Asheville. I got ticket to a play. I have also made lunch reservations at a restaurant that we like. We’ll return tomorrow night.
Today we had lunch with Mark and Katherine Harrington. I had told Mark about Kate’s Alzheimer’s a few weeks ago and couldn’t help but wonder if he noticed anything different about her. I could believe not. The one thing that I think is different is that she speaks more boldly and confidently and more than she used to do. She also interrupts others speaking more frequently than in the past. It is quite difficultl for me to express precisely what this difference is, but it seems like she is working harder to make herself heard. There is also a bit of child-like enthusiasm for lots of things.
One of my problems lately is adjusting to her wearing some of my clothes while she is working in the yard. In particular she wears some of my tee shirts. Once they have gotten dirty, the stains don’t come out of them. This is one of those situations I have to be careful about. I have chosen not to say anything because she gets defensive or she jumps on me for being so compulsive and overly concerned about my property.
She is working hard to be on time and sometimes senses pressure from me when I haven’t done anything at all. That happened today when I came home a little early for our lunch with the Harringtons. I did this because I feared she would still be working out in the yard if I came home just in time for us to leave. At any rate, she ended up feeling pressure to get ready quickly. I hadn’t done anything to rush her because I thought we had plenty of time. At one point, she told me that it wouldn’t hurt the Harringtons if we were five minutes late. As it turns out we were on time, but she needled me because she thought I was getting fidgety over her not being ready. I confess that frequently I do get fidgety. This wasn’t one of those times.
The Robinsons visit last Wednesday was a good one. It gave Kate a psychological boost. It was a non-threatening experience in which she could chit-chat on routine things and things from the past. I find that all experiences whether it is a good movie, a theater production, time with friends, eating out, etc. play a part in keeping her spirits up. I don’t mean that she gets depressed regularly. She does not. It’s just that she enjoys having things to do. That is increasingly important as her ability to do some things decreases.
We have been pretty active in the days since the visit. One of the things that she has enjoyed most was a book festival. We went on Saturday and Sunday specifically to see and hear one of my former clients who has written a book about his experiences in public relations. In addition, we browsed through the vendor area and saw a number of people we know in the hallways and in sessions we attended.
Kate got depressed when she was getting dressed for church. She had a hard time finding something that fits. This kind of situation occurs more frequently now. While the fundamental issue is her weight, I have tried to see that she has slacks that will fit. As I noted in one or two earlier posts, I took her to buy clothes about 6-8 weeks ago. We got 5 pair of slacks and several tops to go with them. She has rarely worn them. I assume that is because she forgets she has them. I have put the new clothes right at the front of the closet so that she can find them easily, but I am now assuming that she customarily has put things in some other location. I need to be more conscious of when she is getting dressed and helping her pick out things. The problem with this approach is that she is coming to resent my help thinking that she doesn’t need it.
The issue of Kate’s weight and inability to get into her clothes (slacks specifically) continued yesterday. This time we were getting ready to go to dinner. Once again, she got frustrated because she couldn’t find any slacks that fit her. I told her that I had put aside the ones she wore on Friday night because they did fit her. They were part of the ones we recently bought. When I went to the closet to get them, they were missing from the hanger on which I had hung them. I looked around her room (the office) and the closet and couldn’t find them. I did, however, find a pair that were marked a 12 which should fit. They were a bit tight, but she was able to wear them. During this episode, she was in tears, whimpering would be a better way to describe it. It was very much like the day before but not as severe as the one at Lowe’s the night before that.
I should add that we had a very nice dinner. I’m not referring to the meal itself though it was good. I mean she was calm, and we both enjoyed ourselves and being together. We are spending a considerable amount of money eating out, but it is not just the food that I am after. I am trying to maximize the amount of quality time we have together. It seems that it is easiest when we are doing something together like dining. We are able to talk more easily with one another, and she is able to have some time when she is not personally frustrated or getting messages from me that she has done something wrong.
This morning getting ready for church, Kate encountered more problems finding something to wear. I was just about ready to tell her she might be better to stay at home (which would have been very difficult to say without offending her) when I found a pair of slacks that I thought might work. They did even though she was unable to zip them up all the way. We still haven’t found the new ones she wore Friday night. I did take a step forward when I told her I wanted to help her. Although she has adamantly refused before, she was sufficiently frustrated to accept. We agreed that we would work together to clean up her room and identify the clothes she is able to wear.
So how am I feeling about all this? I must admit there is a little panic for me as well. I recognize that her condition is worsening and that she is aware of it, but she still wants to maintain whatever independence she is able to muster. I find that every time I try to say something to curb one of the behaviors I think is getting out of hand, she is offended. I try to accept whatever she wants to do. This means she eats more than she should. I am less sure that my feelings about her purchases for the yard are appropriate. She is giving the yard more color; it occupies her time, and serves as therapy. In that respect, it is pretty cheap.
I also have wondered if my telling Ellen about Kate’s diagnosis might have been for me to have someone from whom I don’t have to hide things. I have also decided to tell Tom and Stan. They would be my closest mail friends. I do believe telling them is a benefit to me. It certainly doesn’t change things for Kate. This coming Saturday Jan and Scott Greeley are coming from Nashville for lunch. I am considering telling them simply to make them aware since we are so close to them. Kate’s and Scott’s mothers were pregnant with them in 1940. I think they should know.
Kate’s PEO meeting went well. Her club enjoys coming here because they have more space for their meeting than at most of the other homes where they meet. This meant that Kate received much appreciation for hosting the meeting. She was pleased and happy when I returned to the house. This meant that I felt much better myself. It is amazing how my feelings rise and fall with hers. It reminds me of the ups and downs I would have after visiting Dad each day..
Yesterday she approached something else that troubled her although nothing like the meltdown the night before PEO. She was picking out clothes to wear to a benefit for a summer camp experience for cancer patients at one of our local hospitals. She couldn’t find anything to wear. She has gained weight that is making it especially difficult or impossible to get into her slacks. Earlier in the week I had brought home 3 new pair of slacks that we had purchased 2 weeks earlier. She had no idea where they were. Her office where she keeps her clothes has clothes thrown on the floor and bed and chairs, not in nice tidy ways but just thrown there. It is not surprising she can’t find anything. I feel discouraged because I we just bought 4-5 new tops and 5 pair of slacks, and we can’t even find them in the mess. Actually, we still have to pick up 2 remaining pair of slacks. I’ll make sure I know where they are.
One of my problems is that I have been so slow to take over things like her clothes closet. I think that is largely because it doesn’t come naturally to me as well as the fact that she doesn’t want me to do everything. Yesterday I did tell her I would help her organize her clothes so that she would know where to find them.
That doesn’t address the fundamental problem concerning her weight. She thinks she is cutting down, but she continues to eat more than she needs to sustain her weight. I asked her last night if I could help her. She said she wanted to do it herself and that she didn’t want me to stop her from eating things she chooses. This is the position I have taken up to now. Perhaps this will just work its way out. I fear, however, that this won’t happen until she has gained even more weight.
We just got home from lunch and running several errands. The last trip was to Lowe’s where we had an unpleasant experience that I fear may be a hint of things to come. The start of the story is that last week I took Kate to get some new clothes. We are going to more receptions that require dressy casual attire, and she has gained weight and can’t get into many of her old clothes. We spent a total of $2,200. My general style is to take great care with the things I buy. That has never been here style but it is getting worse with the Alzheimer’s. Today she put on one of the tops she had bought. After we came home from getting her hair cut this morning, I went to the office for an hour. When I got home, I found her pruning shrubs in the backyard. She was still wearing the new top. I resisted saying anything.
This afternoon we went to Lowe’s to check on delivery of compost. While I was checking, she was picking up plants. The first thing I saw was dirt from the plants on her new top. I said something to her about it and started to dust it off when she got upset. We went ahead and got in the car. On the way home, she talked about various ways she was going to be able to get new plants. She started with a taxi. Then she talked about walking to Lowe’s and bringing the plants back home in one of their “grocery carts.” Then she said she was going to buy her own car. When we got home, I tried to tell her that I didn’t intend to stop her from buying plants that I just wanted to get her blouse cleaned off. She said she just didn’t understand. I stopped trying to explain. It is just no use.
This is the second time I recall that I said something that hurt her. The first was on the New Zealand trip. We were browsing in a gift shop when she wanted to buy a small tin box with a picture of a cat on the top. This was early in the trip; so I told her she might want to think about her priorities in things she would want over the whole time we would be gone because we wouldn’t have room to carry everything that she might want. I didn’t mean at all that she couldn’t buy the box. She didn’t buy it, but she was unhappy and told me she couldn’t understand why I wouldn’t let her buy it. Not only that but she brought it up several other times in the days following. It obviously was important to her.
I find myself frustrated by things, but I can’t say anything or I will hurt her. She, on the other hand, feels annoyed with me, and feels I am controlling her life. She brings this up periodically and is proud to point out the things she knows and can do. I have always said that people with Alzheimer’s know at the beginning that they are not able to do things or remember things the way they should. I still believe this, but I think she is beginning to enter the stage where she believes she is far more capable than she is. That is hard for me to take.