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Something’s on her mind.

I am sitting across the table from Kate at Panera. She is working a jigsaw puzzle. No surprises so far. A minute ago she said, “You know, you are the one person I trust.” I told her I wanted her to trust me always. She closed her eyes a minute. I asked if she were tired. She said she was, but she didn’t want to go home. Then she said, “I know your name.” There was a very slight pause, and she said, “Richard Creighton.” She hasn’t said anything since. She looks very tired. I wonder what she is thinking? What is on her mind? I would really like to know.

It is now a few minutes later. Kate said, “I’ll get out of it.” I stopped and looked at her and said, “Is there something I could help you with?” She said no.  Then she said, “i’m just kinda out of it.” In another few minutes, she said, “Lawrence Willcox.” He was a friend of ours at TCU. She didn’t say anything about him, just his name. I asked how she happened to think of him. She said, “I don’t know. It just came to me.” She seems to be in a very reflective mood.

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I’m surprised.

We are back at Panera for the second time today. We spent about two hours here this morning. We were back home by noon. It is a much warmer day today, so Kate wanted to work outside. She came in after a couple of hours and took a shower. Then she was ready to leave again. We arrived here about fifteen minutes ago and had a conversation with a medical student whom we had met before Christmas when he was here studying for his exams. When he left, Kate looked at me and asked, “What’s the name of this place?” I told her. Then she said, “I don’t know why I can’t remember that.” Then she tried to repeat but asked me to tell her the name again. She was having a hard time pronouncing it as though this were the first time she had ever heard the word. She was trying to pronounce it with a “T” rather than a “P.” I corrected her and she practiced saying it several times.

In some ways, I feel I shouldn’t be surprised. After all, she forgets most things. On the other hand, Panera is such a large part of our lives that it seems like a name she would hold on to for a while longer.

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Kate’s not the only one who forgets.

Kate has a nickname for me, “MM,” “My Memory.” I don’t really have a great memory, but she thinks so. Of course, compared to hers, it is fantastic. I am able to help her with most things she forgets. It is not unusual, however, for me to slip up. I did just that this afternoon. I completely forgot about our 3:00 appointments for haircuts. Fortunately, Dawn called about 3:05 to ask if she had made a mistake. I checked my calendar. I had entered it correctly. I just hadn’t looked at it.

Her phone call broke into a very peaceful and unusual moment. Kate and I had returned from lunch a few minutes before 2:00. It is the first nice day after almost a week of cold temperatures. For that reason, I fully expected Kate to head straight for the yard when we got home. Instead she came in the house and brushed her teeth. Then she brought her iPad into the family room and took a seat. When I saw her, I told her I would come in and join her. I put on some piano music by Andre Previn and sat down on the sofa with my laptop where I made my previous journal entry. We don’t have many moments like that. I think we were both enjoying it. I know I was. Thus, I had mixed feelings about Dawn’s call. I knew we had made a commitment to be there. I needed to have my haircut, and Kate was due for color. On the other hand, I hated to break the spell. I’ll remember that as a special time during which we didn’t say a word to each other. We just enjoyed quietly passing time together.

As I reflect on what I just said, I have to contradict myself. Every evening we have a similar experience when we return home from dinner. We go back to our bedroom where I sit in my chair and watch the PBS Newshour. Kate sits in her chair and works on her iPad. It is a very peaceful way to end the day. I think what struck me this afternoon was having the experience at that time of the day. Typically, when we are at home, Kate is outside, and I am inside.

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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.