Tuesday, May 20, 2014

I have found that so many things are happening I can’t remember to report on all of them. In an effort to do a better job covering what’s going on, starting today I am going to attempt to write daily updates. I may not be as detailed, but I hope to write more often.

Yesterday was a good day. I took Kate for a haircut at 9:00. While she was there, I went to Barnes & Noble, got a cup of coffee and checked email. I find this to be quite relaxing and today it took a little longer since Kate was also getting color this time.

When she finished, I got a call from her hairdresser’s  daughter telling me Kate was ready. I had made sure that Kate had her phone with her; so I wonder why she didn’t call me herself. Perhaps she forgot she had the phone. In the past few months, she has used her phone much less and usually doesn’t have it with her. That may be because she doesn’t usually have her purse with her. That is to prevent forgetting it.

When I got to the hairdresser’s, Kate asked me if I had the money to pay. I told her I had given her the money. She didn’t remember at all. I told her that it was in a pocket in her purse. I showed her, and she paid. This conversation was in front of her hair dresser, her daughter, and one other customer. This kind of thing makes me think that surely they know about Kate’s AD.

From there we went to Belk’s where I bought some new athletic socks and Kate got hose that she has desperately needed. We also got some new towels for our bathroom, the first since we moved in almost 17 years. Kate also bought some new sunglasses. I wanted to discourage the purchase, but she really wanted them. She has sunglasses although she doesn’t know exactly where they are. This is but one example of when I feel the priority should be on other things. For example, she needs more casual clothes that fit her. She doesn’t seem to feel the same need.

At my suggestion, we went to shop for slacks after leaving Belk’s. She didn’t find anything. I will continue to push on this although I have to be gentle.

We had lunch and went back home. She got ready to go to a funeral over an hour earlier than departure time. Then when it was time to leave, she couldn’t find her shoes and had to wear a different pair. We went from the funeral to get a sandwich and salad for dinner. She just had iced tea. We got home at 6:30, and she changed clothes before going outside to work in the yard. We were going to watch a movie, but she didn’t come in until almost nine o’clock. She thanked me for letting her stay out and commented on how good she felt. We both mentioned how much working in the yard is like therapy for her. It is really amazing.

Thus it was a good day. She was excited about today as well because the woman who helps with landscaping came over at 9:00 this morning to spread compost in the flower beds.

Normal Ups and Downs

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.

Problems with Bank Cards

For months I have been keeping Kate’s debit card and her driver’s license. That has led to a couple of problems lately when she went out to lunch with Ellen and another friend and didn’t have money to pay. They paid and I paid them back.

To avoid this situation, I just put Kate’s cards on her dresser so that she would have money when she goes to lunch tomorrow with Ellen. She was a little irritated and asked if we couldn’t just keep the cards on the table next to her side of the bed. I said that would be all right if she would make sure they stayed there. She looked at me seriously and said, “why wouldn’t I?” I told her we would talk about it later. She really could not imagine why? This is something that concerns me because it suggests she is less cognizant of her condition than she has been in the past.

Going Back Home

As we were preparing to leave the Residence Inn in Lubbock, Kate made a point of telling me she was taking her computer on board the plane to Knoxville. I told her she seemed quite insistent on that. She said, “I thought you would tell me not to take the computer on board; to take the iPad.” This is an illustration of the frustration she is having with me and the irrational thinking that is becoming more common. Of course, she was going to carry her computer on board. That is what she always does.

Sticking to a time schedule is a consistent problem. For example, at 8:30 I told her that breakfast would end at 9:30. I said that she did not have to rush, but I wanted to let her know how much time she had. At 8:50, I told her she had 30 minutes to get ready. She was still in bed. She was still getting ready (slowly) at 9:17 when I told her I was worried that she was going to miss breakfast. We left and made it. Without my pushing, she would never have made it.

Email to Jesse and Kevin

Dear Jesse and Kevin,

 I wanted to let you know a couple of things. First, Mom received a surprise recognition at church today. Presbyterian Women gave her a life membership in their organization for her almost 20 years of service as the volunteer librarian. She was surprised and delighted. As you know she committed a large part of her life to the church library. It might be nice if you gave her a call or sent her an email congratulating her. I was a little concerned about having to create some creative story so that she would go to this luncheon. You probably would not know this, but she has never been involved with Presbyterian Women or one of the church circles. This may have been the first time she attended one of their luncheons. At any rate, it turned out to be rather easy to get her there. I simply said, “I wanted you to know that you are going to get a call from someone at church inviting you to the next luncheon sponsored by Presbyterian Women, and I think you should go.” I thought she would ask why. She never questioned it at all; so I didn’t have to resort to making up a story. The exception is that the person who called her talked with me and told me to tell her that she would bring her home if I would take her. What your mother didn’t know was that I had been invited to be present for the award; so I brought her home.

Second, is that two weeks ago today she told Ellen about her diagnosis. This is the first time she has told anyone. I don’t know what prompted her to do it at that time, but it came after several days of significant frustration over having to rush to find the right clothes and get herself ready for several events. It is interesting that for the first time I mentioned it to two of my friends, Tom and Stan, with whom I carry on a daily email correspondence. I suspect we were both feeling that the situation is getting worse and felt it was time to tell our closest friends. She, of course, does not know that I had already told Ellen a couple of weeks earlier and that I told Tom and Stan. Neither does she know that you are aware. She told Ellen that she wanted to be the one to tell you. She doesn’t, however, believe it is time for you to know. As I mentioned before, she does not realize how far along she is. She does clearly recognize that her condition is worsening all the time.

I am planning our summer as though this may be the last summer that we have the grandchildren for a visit or a trip. I would never say that to your mom. She is still looking forward to taking the twins and Taylor to New York. It is hard for me to envision doing this next summer. I still don’t think it is time to tell the children. Although they will begin to notice signs in the future, I suspect they could be with her now without realizing. Our trip to Lubbock this Friday and the following 5 days will be something of a test in that respect.

We are eagerly looking forward to a grand summer.

Love,

Dad

More Signs of Problems

Yesterday was a busy day. We went to our monthly YMCA breakfast at the at 8:00. At 10:00 I had a short conference call with our attorney. At 11:45 we went to a lunch for seniors at our church. We came home after that. I changed clothes and then went across town to a foundation event honoring donors.

I arrived home sometime before 4:00. We were scheduled to meet Ellen and some of her friends at a restaurant at 5:00 before attending a performance of Camelot at 7:30. I was concerned that Kate might still be in the yard when I got home but didn’t see her. When I went inside, I saw that she had laid out her clothes on our bed. That made me think that she had remembered that we were going out. I went around to her office (which I call her room) where she keeps all of her clothes. I noticed that the room was cleaned up except for a large pile of things on the floor. She told me to go away, to leave her alone. She said she had to clean up these things. I have learned that when this kind of thing occurs, it is best to follow her instructions and went back to the kitchen where I was reviewing the day’s email.

In a little while, she called for me. I went to her in the guest room where she was dressing. She told me to vacuum the closet where she had taken off her clothes she had had on outside. Then she asked, “What time is he coming?” I said, “Who?” She said, “Morton.” (Bruce Morton is my old roommate at TCU. He and his wife Debbie are going to visit us in June.) I told her the Mortons were not coming until June. She asked, “Then who’s coming?” I told her that no one was coming, that we were going to meet Ellen for dinner at 5:00 and then go to see Camelot after that. The she broke down. It was then that I got the picture. She hadn’t remembered that we were going out at all. She thought we were going to have house guests and needed to have everything cleaned up.

Then she felt she needed to wear different clothes than the ones she was putting on. We went to her closet where I discovered that all the mess that was on the floor in her room was now stuffed into her closet. It was at least 2 feet high and went from the front of the closet to the shelves in the back of the closet, at least 6 feet. It turns out that all her shoes were in the back of the closet; so she couldn’t get to them without taking everything out of the closet. I decided to crawl over the debris and get some shoes. I found a pair that she said would work. She was now in a panic attack. I tried to calm her down. I told her I thought we should cancel our plans to meet Ellen for dinner, that we would simply take our time and go to a restaurant on our own and meet Ellen and her group at the theater. She gladly accepted that suggestion. The panic attack subsided, but she was whipped from the emotion generated by the experience. She didn’t really become herself again until we met Ellen at the musical. The rest of the evening went well. She got into bed quickly and slept well.

It was painful to watch her go through this, and this is something that I could not have prevented. She has had a couple of other experiences in which she was confused about our going somewhere or meeting someone that we had never discussed at all. I believe this particular experience  arises from something I said at lunch. Our speaker was from the zoo and botanical garden. I told Kate that we should think about taking the Mortons to the zoo when they are here. She thought that was a good idea. We didn’t discuss it after that, but it must have stuck some way in her mind and transformed into their coming last night.

As painful as this experience was for both of us, I know this is just a precursor of things to come.

An Interesting Example of Confusion

Although some stories of my life these days are sad ones or frustrating ones, there are some or aspects of some, that I think of as cute or sweet or humorous. One of those occurred yesterday. Between Panera Bread and the road that runs to our house there is another road that runs parallel to it and then curves around the back of the shopping center (where Panera’s is located) toward town. The road has been closed for several months while work was being completed on draining issues and then resurfaced. After it re-opened, Kate wanted me to drive along the road. For some reason she liked the drive. Yesterday as we left Panera’s, she asked me to drive home “the other way.” I knew exactly what she meant and did so. What I think is cute about this is that it is NOT another way home at all. It is a road that runs into 2 other roads that brings us right back to the same shopping center we just left. This time we just drive by “the other way home” and turn on the road we should have turned on to start with. In miles, it must be two-mile circle to get back where we started. She does not appear to have any sense of this. I should add that she has always been geographically challenged, but in the past she would have recognized this is not simply another way home.

I hasten to say that this kind of thing also involves a touch of sadness as I see her becoming more childlike.

 

Home from the Golf Tournament

I just got home from the foundation’s annual golf tournament, one of our biggest fundraisers. Kate is not home; so I know she got to go with our neighbor to the orchid garden. I looked around for her debt card and money and tip information and found them on the bed in her office. I guess that means that the neighbor had to pay. I know this had to be embarrassing for Kate. She had worked so hard to do this on her own.

On a different note, Kate gave me a bill for plants that Ellen had bought for her on Wednesday. It was $230. She acted scared to give it to me. She had held off giving it to me since Wednesday afternoon. Then she said something that I have thought for a long, long time. She said, “Think of it as my therapy.” That is exactly how I think of it.

Life can be confusing.

In the past two weeks I have noticed Kate’s making a more concerted effort to be on time and do things right. For example, early this week a neighbor called to invite Kate to go with her to an orchid garden of some type. Yesterday she called, and I answered the phone. She said the tell Kate that she would be by to get her at 9:00 this morning and that the admission fee is $6 that would be applied to any purchases she might make. They were going to lunch afterwards. I was a bit uneasy because this is during the time that I would be at the Y. It was clear that she was confident that all would go well, but I very carefully prepared her to take her debit card and some cash. I put them on top of her dresser in our bedroom. I also put a sticky note with tipping information. I told her it would probably be best if she just put the cards and money in a pocket rather than carrying a purse thinking that she might leave the purse someplace.

This morning I was prepared to set the alarm for her to make sure she got up. I also set reminders on my phone for me to call her to make sure that she was ready. The good news is that she woke up when my alarm went off at 5:00. She asked that I turn the radio on. She got up and got back into the bed with the radio still on. I was calling her around 8:30 when I got a call from her. She was telling me she had found the receipt for her lunch with Ellen on Wednesday. She also said she was dressed and ready for our neighbor.

At 9:15, I received a phone call. She asked where I put her card and money. I told her it was on the dresser. She said it was not there now and that her ride was there. She hung up to look for it. I won’t know until this afternoon if she found them or if our neighbor told her she would pay and Kate could reimburse her.

All of this follows the 3-4 crises we had 10 days to two weeks ago as she was trying to get ready to go out. I am trying to interpret everything that is going on right now. It is interesting that Kate and I both told people about her condition within one day of each other. I told Tom and Stan on Monday of last week. She told Ellen on Tuesday of last week. Perhaps we both felt the crises of the preceding few days was a sign that Kate’s condition is getting worse, and we just had to tell those closest to us.

I also think Kate is frightened because she is clear-headed enough to grasp that she is losing her ability to do many things. Naturally, this affects me as well. As I always said in connection with my visits to Dad, when he was doing well, I was doing well.

 

Kate Tells Her Best Friend

I was about to write a new update when I saw that I hadn’t mentioned that last Tuesday, April 15, Kate told Ellen about her Alzheimer’s. They had had lunch the day before. I am not sure if anything special happened, but when I got home that afternoon, Kate told me that she was going to call Ellen about having lunch the next day and wanted to know if I could join them. I told her I could, and the she said she wanted to ask her over to the house following lunch. I suspected (and have also learned) that she might be telling Ellen. She only said, “Let’s talk about it tomorrow.” (This very frequent pattern of saying, “Let’s not talk about it now” or “Let’s talk about it later” I take as an indication of the frustration she feels when she tries to explain herself.) The next morning she told me she was going to tell Ellen.

After coming home from lunch, the three of us chatted for a short time before Kate simply said, “I wanted you to know that I have Alzheimer’s.” Ellen did not react. I was concerned about the way she might react because it might clue Kate in that I had already told Ellen. Later Kate told me she appreciated the way Ellen had reacted. She didn’t want anything that indicated great surprise or pity.

It was interesting to me that as Kate provided a little more information. She told Ellen that she and I were adjusting well and that our lives had not changed in any way since the diagnosis. Of course, that is not true. They have changed a lot. I also felt as though the way she expressed it reinforced my sense that Kate does not recognize how far along she really is. She is still thinking about years ahead when we do things with the grandchildren etc. On the other hand, I am thinking this summer may be the last summer that we host or travel with the grandchildren. That is because it is hard for me to take care of her and the grandchildren. I hope I am wrong. It could be that because the grandchildren are growing up that they will need less attention. As they say, “time will tell.”

One other related thing from the conversation with Ellen is that Kate told her that Ken also has Alzheimer’s but that he is further along than she. I don’t know how she got this impression. It is certainly consistent with other things about which she gets confused. The reality is that they had trouble diagnosing Ken’s Alzheimer’s because it is in such an early stage.

Kate’s current behavioral symptoms cause me to wonder if she is now entering that stage where she really doesn’t recognize that she has Alzheimer’s. This is hard to express. I don’t believe that she will really reach that stage until much later. I do think, however, that there might be a gradual progression toward that end and that I am observing the beginnings of that process. One of the things that is happening is that she is periodically irritated by my helping her. She points out to me that she does not need my help on most things. I am trying to be more careful in discriminating those things for which she does and does not need assistance. One of the many challenges for the caregiver is just this. There are so many things that the patient does wrong and also for which she asks help that the caregiver tends to extend that to more things than are necessary. That, in turn, takes away from the patient’s sense of autonomy. I’m going to be working on this. The other side of the coin is that the patient easily grasps some areas where she needs help but doesn’t see others. As with most things, it is an adjustment for both patient and caregiver.