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My Blog

It’s been a while since I have mentioned my blog. I am doing so now because I plan to launch it on January 21. That day will mark seven years since Kate’s diagnosis. I don’t know exactly when I decided to start a blog. I know that I had the idea in the early days of this journal. It wasn’t a serious thought at the time. I only intended to keep a record of our lives since the diagnosis. I didn’t know if or when I might make anything public.

My dad spent his last three and a half years in a skilled nursing facility following a stroke and several seizures. Prior to that, he had been a very active email correspondent. The stroke left him unable to use his computer. He had a list of 40-50 people to whom he sent email, mostly the kind that others had forwarded to him. I decided to keep up with these people by sending regular emails updating them on his life and how he was doing. I did this under his name with “And Scribe” typed under his name. In an early message, I explained that it was I who was writing the messages based on what I thought he might say if he could type them himself. I kept that up until the day he died. When I looked back at those emails, I saw that it was a beautiful account of his last years. It was filled with all the highs and lows of his life as well as everything in between. I copied all of them and the replies in a Word file with the thought that I might some day put them in a book. I actually did create an electronic book  although I have never published nor distributed it. That is something I still intend to do, probably on his next birthday on which he would have been 105. It was those emails that initiated my serious thoughts about a blog to capture our own experiences living with Alzheimer’s.

About two years ago, the idea began to take shape. I had read more about others’ experiences with Alzheimer’s and also talked with more people about our own. Upon hearing that I was keeping a journal, people often said, “You ought to write a book.” That provided an additional impetus to publish the journal in some form. Given today’s online world, a blog seemed a natural way to share it.

My first step was to secure an appropriate URL (LivingWithAlzheimer’s.com). I did that in November 2016. Since then I have been waiting for the right time to launch the site. Originally, I thought it would be in late summer or early Fall 2017. I soon discovered there were lots of things I had to do or consider before that would be possible. I enlisted the help of a friend and former colleague, Mark Harrington. He is a multi-talented guy who early in his career worked for a publisher before working as a writer in my company. He left us to work on his own as a writer and IT consultant. It is through him that I have been able to make it a reality. Mark has taken care of all the technical aspects to get the blog online. He has also been a great sounding board for me as I dealt with the many details that are required.

One of the things he recommended was that I read what I had written, something I had never done. I felt that he was right, but it is now over a thousand pages. That’s a lot of reading, and I haven’t yet read everything. In its present state, the site has the look it will have when it is launched to the online community. As of today, Mark has uploaded 706 journal entries. Among those, I have read, edited, and “published” 426. That leaves me with another 280 to read and edit before publishing. Mark has about a year and a half of entries to upload so that I can do my review and editing. There is no way that I will be able to do this before the launch date, but I am trying to get as much as possible done before then. I could, of course, change the launch date; however, I decided that many people will just read the current posts. I don’t expect many to start at the beginning in 2011 and read consecutively through the entire journal. No one is likely to do that.

I expect that 600 or more posts will be ready by the launch date. In addition to posting new entries, I will continue publishing the older posts that I have not completed by that time. Readers (assuming there are some) will be able to read just the new posts or read older posts by selecting them by date or category. I hope that will enable readers to pursue the subject matter that best matches their interests.

I have no idea how many people will visit the site. Even if no one does, I will feel good knowing that I have created an account of what living with Alzheimer’s has been like for Kate and me. It would be nice, however, if at least a few found it relevant to their own lives.

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Coordination Problems and Confusion

For someone like me having a schedule is helpful in getting things done. Since our return from Texas, Kate has been getting up later. That has meant getting to Panera has been later. That hasn’t presented a problem since I haven’t had any meetings or other obligations during the holidays. Today is different. I go back to Rotary. That means the sitter comes at noon instead of 1:00.
Today is different in another way. Kate got up earlier, probably related to the fact that she went to bed shortly after 7:00 last night. That influenced our morning schedule. We got to Panera earlier, and she wanted to come home before lunch. I generally try to get her to lunch at 11:00 so that we can be back for the sitter in plenty of time. When I went to our bedroom at 11:00, she was resting in bed. I asked if she would like a sandwich. She said she would rather stay in bed. I decided to let her remain in bed and that the sitter could take her to lunch.

A little after 11:15, she came into the kitchen with her coat on and iPad under her arm. She was ready to go back to Panera. Knowing that we might have difficulty getting back home in time for the sitter, I called the agency and asked the sitter to meet us at Panera, something I may establish as a regular routine. That would be a better way of handling the situation rather than rushing Kate.

Before leaving the house, she took a can of Dr. Pepper out of the refrigerator to take with her. She is particular about the mixture of Dr. Pepper she often gets out of the machine at Panera. When we got out of the car, I took the can of Dr. Pepper. When we got inside, I offered to get some ice. When I came back to the table, I pulled the can of Dr. Pepper out of my pocket and poured it into her cup. She said, “Aren’t you smart.” When I asked why, she indicated it was because I brought the Dr. Pepper for her. She had forgotten that it was she who had actually thought to bring it.

Then I left to go to the counter where I ordered her sandwich. As I returned to the table, I noticed Kate at the drink machine. She had emptied the Dr. Pepper, replaced the ice, and was getting another drink from the machine. When I asked about her Dr. Pepper, she had no recollection of having had one. I don’t know why she poured it out. I just let it go. She took a sip out of her drink. She didn’t like it and gave it to me to taste. She had gotten carbonated water. I went back to the machine and got her an Arnold Palmer. She is now happily working on her iPad while eating her lunch. She seems happy. So am I.

The major learning in this episode for me is that I should be prepared to let the sitter meet us here every week unless there are other reasons for doing otherwise. I can’t be too rigid with my own desire to stick to a regular schedule. By letting go, I will save myself a little stress.

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More Firsts

We’ve been regulars at Panera for quite some time, now. Kate often gets up from our table and goes to the restroom. She has always found it without asking me for help. I am unaware of her asking anyone else, although that is certainly possible. Our regular table is right around the corner from the restrooms, so I am inclined to think that she hasn’t had to ask. Until today, that is. This afternoon before we prepared to leave for dinner, she asked me the location of the restroom. I took her part way there (we were not seated at our regular table which may account for her not knowing where it was) and told her to turn left. I watched for her so she was able to return to our table without difficulty.

This morning, however, she and I went to our regular table where I put my iPad and my cup on the table, got my computer out of its case, and sat down at the table. She had her iPad with her along with her cup. She went directly to the drinks which is in a direct line from our table only a few feet away. After a few minutes, she hadn’t returned to the table. I didn’t see her anywhere around the area in which our table is located. Then I thought she might have gone to the restroom. I looked around the entire dining area and found her in the front section sitting there with her cup and working puzzles on her iPad. I went over to her and asked if she would like to join me. I didn’t say anything else, and neither did she. She closed her iPad, picked up her cup and coat, and walked with me to our regular table.

I am quite accustomed to her not being able to find me when our regular table and the ones around it are occupied. In those instances I stand and wait in a place where we can see each other when she has gotten her drink. Prior to this, she has not failed to come directly to our regular table; so we had two firsts in one day. These two events notwithstanding, we had a really nice day. Again, she was in a good humor all day.

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Cataract Surgery? Or Not?

Kate has annual check ups with her ophthalmologist. Several years ago, the doctor mentioned that Kate had a cataract in one of her eyes. We’ve been following it since then, but it had not reached the point at which surgery is recommended. That changed in her most recent visit in December. After a brief discussion, we decided to pursue the surgery in January. Since then, I have had serious doubts as to the advisability of this procedure. Although such surgery is much easier than it used to be, it still requires the use of anesthesia that is reported to have potential negative effects on Alzheimer’s patients. We have a preliminary appointment scheduled with the doctor two days from now. I am considering canceling.

This morning for the first time I posted a question on the Caregivers’ Forum of the Alzheimer’s Association. I pointed out the following things I was considering in an effort to make the wisest decision for Kate.

1. Kate, age 77 in one week, was diagnosed 7 years ago.
2. We have maintained a high quality of life to the present time.
3. She does have some vision problems. She has a cataract in one eye and 20/60 vision in the other.
4. She has trouble recognizing people in person and in photos. I can’t be sure how much is a result of her Alzheimer’s and how much is her vision.
5. She expresses no vision problems, but I observe she is much more careful going up and down stairs or curbs than she used to be, especially at night.
6. I believe she is in the early-to-middle part of Stage 6 of 7 stages of Alzheimer’s.
7. I can’t predict the future, but my guess is that in 6-12 months having had the surgery might not matter.
8. It is possible that the anesthesia alone might effect her in a way that would reduce our quality time together.

The responses I got from my post avoid giving me a specific instruction as to what I should do, but they reinforce my concerns. I just heard from Virginia, Ken’s wife. I had asked for her thoughts. Her reply provides additional weight to my uneasiness in moving forward with the surgery.

When I consider everything, I feel the risks outweigh the gains. I would love to improve her vision but not at the cost of shortening our quality time together. I intend to cancel the surgery. Tomorrow I will contact the ophthalmologist.

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Wanting to Help

Among the first signs I noticed related to Kate’s Alzheimer’s was her lack of attention to some of her major household responsibilities. The most obvious one was that she often didn’t have dinner ready. It also included less obvious things like washing clothes but leaving them in the washing machine for a day or two before putting them into the dryer. Over the years, I have jumped in to take care of these things without our ever talking about it. It was as though she didn’t notice that I was taking care of meals, the clothes, and other household chores.

Thus it has come as a surprise to me that on several occasions recently she has asked if she could help me with something. Two of those occurred yesterday. She saw that I was taking clothes from the washer and putting them in the dryer. She asked if she could help. I felt little need for the help. This is a pretty easy task, but I was so pleased with her offer that I said yes. Later, I brought the dry clothes into the family room where I usually listen to music while folding them. I had already separated her things from mine when she walked into the room. Once again, she asked if she could help me. I quickly said yes. She picked up all of her things and walked back to her room. I later discovered that she hadn’t folded or picked up her clothes, but I was happy with her offer to help. That and her enjoyment of Darkest Hour that we saw yesterday afternoon made yesterday another good day.

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Darkest Hour Scores a Victory with Us

Over the past year, Kate has enjoyed very few of the movies we have seen. That was quite a disappointment to me because we have always liked them. In addition, they have offered us another entertainment option besides the various live performances we attend. During the past two to three months, I have been very selective in my movie choices. That has meant we have seen few in that time. I had heard good things about the movie, Darkest Hour. Our friends, the Robinsons had seen it two days ago and highly recommended it. I mentioned it to Kate and told her it was about Churchill during World War II. She immediately reacted positively about seeing it. Yesterday I mentioned it again and asked if she was sure she would like to see it. She confirmed her interest. In itself that isn’t surprising. She has always liked films on historical topics like this one.

This afternoon we saw it, and I am very happy to report that she loved it. I was not only happy that she liked the film but that it signaled that she is still able to appreciate a movie of this nature. That gives me hope that we may find others that will appeal to her. This was the highlight of my day.

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Reflections on Having a Sitter

It is hard for me to believe, but it has been four months since  introducing a sitter into our lives. I thought about it a long time before making the decision. Then I agonized over the best way to present this to Kate. As it turned out, my worries were unwarranted. Kate accepted the sitter from the first day. She has always been very welcoming and has made comments about how sharp they are, something she says about most people she meets. It has been a relief to see how she responds each time the sitter arrives. Today, for example, I was in the kitchen when the sitter drove into the garage. We chatted briefly. Then I took her back to our bedroom where Kate was working on her iPad. As we entered, I said, “Mary is here, and I am off to the Y. You can do whatever you like. If you wanted you could go to Panera.” At that, Kate’s eyes brightened. She had a big smile on her face as she looked at Mary and said, “We could go to Panera.” So once again, I left without any worries about how she would get along.

There is another aspect to having a sitter that I hadn’t fully anticipated. (I should make it clear that we have two different sitters. One comes every Monday. The other comes Wednesdays and Fridays.)  It still bothers me to leave her. As I suggested in a post two or three weeks ago, I was motivated to engage a sitter to enable me to continue going to the Y, Rotary, attend any meetings that I might have, and take care of any routine errands. I find that sometimes four hours seems very short. That is especially true when I go to the Y and Rotary on Monday. That leaves me only about thirty to forty-five minutes for other things. On Wednesdays, I meet my friend, Mark, for coffee and conversation. He is helping me transfer this journal to a blog. If we meet for an hour, I usually have forty-five minutes before I have to be home. On Friday, however, I don’t have any other standing obligations except the Y. That leaves me with almost two hours. I put that time to good use. I make new entries like this one for my journal and also review older entries to upload to my blog. (I’ll say more about that in a separate post.) While I make good use of the time, I feel the slightest tinge of guilt that I have left Kate in the hands of a sitter when I could be doing this with her at home, Panera, or Barnes & Noble.

At first, I thought I would get over this feeling rather quickly. Now that four months have passed, it hasn’t gone away. In time, I know that it will. In the meantime, I am following the guidance of my less emotional side and taking advantage of some private time that I would not ordinarily have.

I know that many people caring for a loved one with dementia would love to get a break. I would as well if it were not for the fact that Kate has been relatively easy to care for. In that respect, she is very much like my mother who had an undiagnosed form of dementia. As her illness progressed, she never became agitated or aggressive or displayed any of the kinds of behaviors that try the patience of many caregivers. The same was true for Kate’s mother who had vascular dementia. I am not ready to say that Kate will never express any of these problems, but she hasn’t so far.

As Kate declines, I am prepared to increase the amount of time the sitter is here. It is comforting to know that our long term care insurance provides up to 13 hours a day should we need it. That is well below the 12 hours a week that a sitter is with her now. I don’t anticipate increasing that anytime soon. I realize, however, that circumstances can change quickly. When the need arises, I will certainly take advantage of it.

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Good Moods Make for Good Days

In my previous post I failed to note that Kate was in an especially good mood yesterday. I am sure that played a significant role in my own sense that we had had such a nice day. It is not that she is usually irritable. She does continue to show more irritability than before her Alzheimer’s, but those moments don’t last long, and, fortunately, at those times she is not difficult to get along with. That said, sometimes she is especially happy and cooperative. That is the way she was yesterday.

She also continues to be reflecting or thinking a lot. Over the course of her illness she has occasionally said something that sounds like we had just been talking about something and expects me to know what she is talking about. There were a couple of those experiences yesterday. She said, “I’m going to be very careful.” Instead of acting puzzled and asking what she was talking about, I said, “That’s a good idea.” She said, “I’m going to stick close to you whenever we are in public.” I told her I would watch out for her. She said, “I know you will. I feel safe when I am with you.”

When she says things like this, as she has done in recent weeks, I tend to impute more to her actions than may be justified. In this case (as in others recently), I believe that she is grappling with a sense that she is less and less in touch with her environment and the people around her. It may be her way of expressing her own insecurity. Overall, she seems not to associate her challenges with her diagnosis, but she still knows she is not normal.

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A Very Nice Day

This has been a very quiet week for us. Since it started with New Year’s Day and was accompanied by colder weather, we haven’t had as many scheduled activities. I’ve actually been a little concerned about the fact that it has been too cold for Kate to work in the yard. That represents a very large portion of her personal time during the day. I’ve wonder how well I might keep her entertained. As of this moment, that has worked out well, and yesterday was especially nice.

Fortunately, Kate has slept later each day this week. The result is that we haven’t been getting to Panera as early as most morning’s lately. It was actually 11:00 two days ago. Yesterday we got there about 10:10. She was ready to leave less than an hour later. That meant it was a little early for lunch; so we returned home. She asked if she could work in the yard. I told her she could but that she wouldn’t have much time as we would go to lunch in a little while. Although it was about 30 degrees at the time, I figured she wouldn’t be out long enough to do any harm.

It turned out that  she came inside to brush her teeth and ended up working on her iPad in the family room. I went in and joined her. As usual, we didn’t talk during that time. It was just nice to be together. Before noon, we left for lunch. We went to a deli that we like but don’t frequent too often because of the crowds. It made for a nice change from our normal routine. We came back to the house for a short time. Then at 2:00, Kate had her monthly massage. While she was there, I went to Whole Foods and worked on my computer.

At 3:00, I picked her up. We had our iPads with us, so I decided to drop by Panera for a while. We were there until 5:00. At that time I suggested we go home and get ready for our opera night at Casa Bella. When we got home, I told Kate I would get her clothes ready for her. She happily accepted that. The only hitch we had was the usual one. I left her while I went to get dressed. She had forgotten we were going out and was still wearing the clothes I had shown her. When I told her we were going out, she reacted like it was the first time she had heard. Again, she simply stopped what she was doing and followed me back to her room where she got dressed.

Last night we had two new opera students from UT. They were outstanding. We enjoyed our meal and the people with whom we sat. It was a cold night, but it was filled with warmth for us. It had been a very good day.

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Asking Questions

Over the course of Kate’s illness, she has relied on me for many things. The number of different things has gradually increased. At first, it was principally as a source of transportation. Over time she has come to depend on me to organize our lives, our daily routines, take care of routine household chores, and most aspects of her life. She has always looked to me to answer questions for which she didn’t know or couldn’t remember the answers. Recently, however, she is asking me more questions. It’s not just that she is asking more. It’s the kind of questions she is asking. They are questions that clearly signal a new stage in her journey. They are asked innocently as though they are the kinds of questions that almost anyone might ask. Another way of expressing this is to say that she displays no effort to disguise the fact that she can’t remember many things.

The questions I have in mind are mostly those about other people. She has much greater difficulty remembering most people’s names, now. That includes close family members. I have found this particularly noticeable during the past three months when we have made two different trips to Texas. She has continually asked me to tell her the names of people like her close childhood friends. That is not too surprising since she rarely sees these people, but it includes longtime friends we keep up with in Nashville. Of greater concern is the increasing moments when she can’t recall the names of our children, Jesse and Kevin. Fortunately, when she is with them, it is obvious that she remembers them and is able to act naturally with them. It is particularly hard (almost impossible) for her to remember the names of their spouses and the grandchildren. The greatest surprise of all occurred yesterday when she asked, “What is my name?” Before I could tell her, she said, “Kate.” Her questions are not limited to names. She frequently asks how long we have been married and how old she is. She never remembers.

I can never know exactly what is going on inside her brain, but I do often speculate about what she is thinking or what motivates her to do things. With respect to the questions, it seems to me that she realizes she can’t recall basic things that she should know and is trying her best to teach herself by asking me over and over. Unlike the way she responded during the earlier stages of her illness, she does not express much frustration over not remembering things. She does say things like “I’ve asked you that before. I don’t know why I can’t remember.” The tone of her voice suggests a minor sense of frustration, but it is nothing like she experienced several years ago.

When she says things like this, I always respond the same way with something like “It’s funny how the brain works or doesn’t work. Sometimes I will forget a name, and then, a little later, it pops into my head.” I have chosen not to tell her that this is a result of her Alzheimer’s. I see no benefit in that.