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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

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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.

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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.

 

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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.

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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.

 

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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.

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Telling Close Friends

I have taken another step in revealing Kate’s Alzheimer’s to others. Last Thursday, I told Mark Harrington when we had lunch. Yesterday I told Tom Robinson and Stan Grady with whom I have had a friendship since TCU. We have been in an email exchange for several years. Tom and Stan have corresponded with each other since they were colleagues early in their academic careers. Here is the email I sent to them yesterday.

Over the course of our email exchange we have spoken about many things going on in our lives – what we do during the day, our personal thoughts about weighty and not-so-weighty matters, and an increasing array of health and wellness issues. Today I would like to tell you about something that I have kept from you. Kate has Alzheimer’s. She has not wanted, and still does not want, anyone to know.

Next Monday, April 21, it will have been three years since her diagnosis. As you would guess, we had suspected as much for as long as 3-6 years before. Kate was convinced of it quite early. I kept reassuring her that we all have memory problems. I also had a measure of doubt because the most common symptoms I was noticing did not seem to involve a loss of memory. It was simply that she was leading what I can only describe as a dysfunctional life.

Our lives changed the moment we heard the doctor tell us the news. Prior to that time I had been annoyed at the little things she was doing or not doing. Once I knew she had AD I became more understanding. We both decided we would make the most of the time we have together. From that point until now, I have pulled away from the office and have spent all the time I can with her.

This should help explain a few things about our life style that you may have wondered about – the fact that we eat out for all our meals except breakfast, the trips we take, my transporting Kate to the doctor, dentist, club meetings, our deciding not to buy another car, my choice of the type of trip we took to New Zealand, and my thoughts about cruising in the future. This doesn’t even begin to outline all the different adjustments that she and I have made, and, of course, this is only the beginning.

I would ask that you keep this to yourselves except for sharing this information with Angie and Shirley. It would hurt Kate deeply if she knew that I had betrayed her confidence. I will tell Bruce at a later date. Until now the only people I have told are our children and her best friend, Ellen. I didn’t tell the children until just before we left for NZ. I told Ellen a little over a week ago. I felt these people needed to know so that they could do as I have done – to make the most of the time we have left.

In that respect, and that only, I can say that knowing she has Alzheimer’s has brought us some very special times together. I can say that we have never been happier. On the other hand, in the past few months I am seeing a noticeable deterioration in her condition. For me it represents a sign of more challenging times ahead. Perhaps that is a factor in my letting you in on this now.

I am sorry to start the day on such a downer, but I just felt the time had come for me to open up.

Richard

 

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More Panic

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.

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Crisis Over

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.

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Mini-Crisis

Although Ellen was surprised about Kate’s diagnosis, she did say that looking back she could see signs. She is now seeing more signs. Yesterday, she came by to pick up Kate for a visitation of a friend who died last week. Kate was not ready when she arrived. I invited her in. Kate was in something of a mild panic over not being able to find any slacks that fit her. A couple of times she called to me for help. She was also making noises that have become commonplace. It is hard to describe. They are something of a groan. Before Ellen had arrived, I had mentioned that I thought she was dressed too casually. She changed. She got a jacket that didn’t quite match what she was wearing. I suggested she might try something else. Then she found something that was better but not just right. I let her go out with it.

We agreed that they would call me when they were finished, and I would meet them for dinner. When they got back to the house, we chatted outside on the patio for a few minutes. When Kate went inside to change clothes, Ellen told me that the day before, Ellen reminded her that they needed to call me even though they had just done so only minutes before. She said that Kate said, “”My short-term memory is really going.”

The biggest crisis we have had occurred last night. Kate is hosting her PEO meeting this morning. This was a last-minute change because the person who was to host was unable to do it. Kate’s immediate thought when she was asked to do it was the yard. She always wants to put the emphasis on the yard. I’m not saying this is a bad thing, but that she then forgets to do things on the inside of the house that need doing. I tried to encourage her to address some of the things to no avail. The bottom line is that she still did not have everything ready late yesterday afternoon. We went over to Panera’ for a quick dinner. I didn’t notice anything special until we were nearly finished. She had a depressed expression on her face. She would look down and put her hand to her head. My interpretation is that she was thinking about all the things she had to do, how difficult it is for her to do them, and how little time she had. This is something I have observed before. I know that she doesn’t like for me to talk. She just wants to be left on her own to get hold of herself. When I asked if she were ready to leave, she said she needed a little more time to calm down. We took another 5-10 minutes, and she said she was ready.

We had planned to go to Lowe’s for a few more plants, something I thought was crazy since it was about 7:00 pm. I asked her if she wanted to go home first. She said yes. We sat on the love seat in the family room and cuddled without talking. From the time we got up to leave Panera’s she was shaking like she was cold. This seemed to ease after we sat for a while at home. She said she was ready to go to Lowe’s.

When we got there, she was shivering and wandered down the aisles looking for plants. When she picked up a plant that was quite different from what she had said she wanted, I told her this was not like what she had said she wanted. She broke into tears and said, “”There’s not going to be anything left that I can do.” I held her a few moments. Then she continued to look for plants even though she was still continuing to cry.

At this point it was clear to me that she is frightened about what is happening to her and what still lies ahead. In the past few months, it had seemed to me that she had entered a phase that was a little more like people are referring to when they say, “At least she doesn’t know.” I have been adamant about saying that Alzheimer’s patients do in fact know for a long time before they don’t know. I was beginning to think that Kate was getting to that point.

It is also clear that Kate believes she is not as far along as she is, but she is aware of her increasing deterioration in memory and function.

So how do feel this morning. Not good. I feel a little tense. I feel as though my heart is beating faster than it usually does. It tears me up to see her go through this. If only there were some way to avoid going through this. I know there are harder days ahead. I am now wondering if the hardest ones are in this phase where the decline is becoming more noticeable, and she has to think about this like someone going to the gas chamber or electric chair. Because I see it as frightening to her, it is frightening to me.