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How am I feeling?

The past two days I have felt more relaxed than I have in several weeks. The explanation is simple. For the past 18-24 months, I have served on a retiree engagement committee of the United Way. We have met monthly during that time. Our objective is to come up with a way to retain the support of our donors as they retire. Within the past six months, the committee’s activity increased. I moderated a focus group for them in early December. During the current year, I was in charge of a short online survey of donors 50 and older to assess their interest in maintaining a connection with United Way.

On the basis of this early work we decided to hold a luncheon meeting to explain the establish a new initiative for retirees. We invited everyone who had been in our focus group and all the survey respondents who expressed interest in learning more about Always United. I served on the subcommittee that was in charge of the luncheon. I also served as emcee of the event which occurred on May 1. This added more responsibility but was manageable.

It was just a couple of months ago that I made my commitment to speak to our Rotary club about my experience as a caregiver for Kate. While that was something that was easy for me to do in terms of my knowledge, it has occupied a good bit of my time. I wanted it to go well. There was so much to say I had to organize my thoughts and have a good outline of what I wanted to say. There was also a certain amount of anxiety related to the fact that this was my first public statement about Kate’s Alzheimer’s.

Not long after my commitment to the Rotary talk, I received a call from the senior pastor of our church asking if I would chair the program committee for a dinner honoring a former pastor. At first, I turned him down. I told him that my responsibilities for Kate made it challenging for me. I conveyed that the bigger problem was not that it would require me to leave her but that it would occupy my mind and add too much stress to my life. After thinking about it overnight, I decided to do it. I felt that in some ways it would actually be therapeutic for me. I enjoy being active and being with people. This would give me another way to accomplish that. I called him back and asked if he had asked someone else. He had not.

That led to my selecting a committee and then meeting with them weekly with emails and phone calls in between. In addition, I had numerous trips to church to talk with our communications director and our IT manager who were assigned to help us in any way we needed.

It was a terrific committee. I am glad that I accepted, but it did require a lot of work. I am glad to say that all three of the events I mentioned above went well.  All-in-all the three experiences were good for me. At the same time they were demanding since they all came at the same time. I am taking satisfaction in the fact that things went well and that I can now relax a bit before something else comes up.

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First Public Speaking Engagement

For most of the time since Kate’s diagnosis, I have planned to speak to groups about our experience. Until recently, I hadn’t done anything to act on this desire. Almost a year ago, I mentioned it to the program chair for our Rotary club.  I spoke the club this past Monday which is the first time that I have spoken publicly.

Although this was the first time I have spoken publicly, I felt comfortable doing so. I felt that I know the subject well, and I had also prepared well. It turned out far better than I expected. The woman introducing me knew me well and gave a very laudatory intro and did so in a very personal, moving way. When I got to the podium, I said, “Who thought the tears would come at this part in the program?”

My presentation also went well. I could tell the audience was engaged. When I was finished, our president told me that he watched them very carefully as he does every week. He also sensed they were engaged. One person, a retired bishop of he Lutheran church of Tennessee, shook my hand and wanted to tell me something. He was so emotionally touched he couldn’t get out the words. I received quite a few hugs from those who spoke to me including a number I hadn’t thought of as huggers. Since the meeting I have seen a number of other people who had heard me speak and made complimentary remarks.

All this is to say that I feel good about my initial effort. Although I was reasonably confident this would be the case, I still wondered if the audience would be interested. I have now answered that question. Now I will start thinking about when and where to speak again. I had already established contact with two people at the local Alzheimer’s Association. They know of my interest in speaking and/or meeting with support groups. I have also spoken with and visited the director of a local center for caregivers. In addition, my relationship to our major hospital system may present opportunities as well. There may also be possibilities through churches and through Kate’s doctor’s primary care practice. They have a couple of social workers who work with caregiver support groups in town.

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Taking Stock Again

Kate and I just returned from a local theater where we left another performance at intermission. This is only the second time we have ever left a performance. Yesterday’s Live in HD at the Met was the first. The interesting thing is that they had something in common. Both were farces, something that Kate does not enjoy. In each instance, they were “bedroom” farces. I do enjoy farces when they are done well, and yesterday’s and today’s performances were quite good. The Met, of course, was especially good. Neither was good from Kate’s perspective.

This makes three performances in three days that she didn’t care for, and I know she couldn’t follow. I can’t help believing that it also may be a sign that Kate’s further decline. I don’t intend to immediately discontinue trying to find things that she will like, but I will be more careful in my selection of things we attend.

I must admit that this also has an impact on the way I feel about the way things are going. Right now I am feeling a bit discouraged. It is interesting that this occurs the day before I make my first public presentation about being a caregiver for someone with Alzheimer’s. I had been a little concerned that I was going to be overly optimistic. I wonder if this will cause me to be more balanced.

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Taking stock of where we are

As I mentioned before, my moods change with Kate’s moods and behavior. At the moment, I am in a somewhat sad mood. This relates directly to what I perceive as a shift that Kate is making to the kind of behavior that we commonly associate with someone who has Alzheimer’s. She seems more distant than usual. This is difficult to tell because she has exhibited signs of distance from things going on around her for a long time. It just seems like they are even “deeper” or more distant than in the past. I find this understandable since she has so little short-term memory, her long-term memory is also poor, and she is unable to comprehend so much of what goes on around her (TV, movies, plays, conversation).

My feelings right now are at least partially associated with a couple of things that happened during the week. The first involved my brother Larry. He came to Knoxville last Sunday afternoon. We had dinner together. The next morning we met him at Panera. The three of us talked for a while. Then we came back to the house where Kate remained outside to pull leaves while Larry and I talked. I left to attend Rotary. Larry was preparing to leave for his farm but went outside to chat with Kate before leaving. When I got home after Rotary, I asked her when Larry left. She didn’t know. I probed a bit, but she was unable to tell me anything. She did not appear to remember that he had been here.

The next day we visited our friends the Davises in Nashville before visiting with Ellen. I had told Kate several times over the previous two or three days that we would be going to see the Davises. I reminded her the morning we left. We talked about it in the car as we left. When we arrived at their house, she didn’t know where we were and asked, “What now?” I told her we would go inside and visit with the Davises. She said, “Tell me their names again.” I did. We went inside and talked for about an hour. Then we went to lunch for another hour. When we got in the car to leave, she told me how much she enjoyed the visit. Then she asked me to tell her their names again. A little later she asked, “What is your brother’s name again?”

Today we went to a Live in HD at The Met production of Der Rosenkavalier. This was Rene Fleming’s last Met performance. It was outstanding, but Kate wanted to leave at the end of the first act which we did. I had noticed she seemed bored. She yawned audibly two or three times during the first act. Although she was not very loud, the people in front and in back of us could certainly hear her.

We have now seen quite a few operas. It was the Live in HD productions that really generated her interest in opera. Today it made no difference. I knew that she was tired going in, but I suspect it was more than being tired. It was a complex comic opera. I know she must have been confused and tuned out. I fear this is just the beginning of things to come.

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Frustration

We are sitting at our usual table at Panera. We arrived early today. Kate was up before I returned home from my walk at 8:00. She was not dressed for church. I reminded her this was church day. She gave me a dirty look and groaned. I hesitated a moment and started to encourage her. Then I decided not to push her. I know she often feels pushed. We decided to come over to Panera for her morning muffin.

She has been trying to work jigsaw puzzles on her iPad, something that has been one of only two things that occupy her time. She has occasionally been frustrated while working the puzzles. I don’t believe it is associated with any difficulty finding and placing the puzzle pieces themselves. Rather, it is that she occasionally hits a “button” that take her to a new screen, and she doesn’t know how to get back to her puzzle. In addition, there are times that the app itself offers an opportunity to do something else. She doesn’t know how to “cancel” and get back to her puzzle.

This morning has been especially frustrating for her. Over a 5-10 minute period, she repeatedly lost her puzzle. Each time I helped her get another one. She did not ask for my help. She simply put the iPad down on the table and, a couple of times, she closed the iPad as though she were ready to go home.

A number of things have happened this week that make me think that Kate is moving closer to another stage of this illness. She hasn’t been staying outside as long, and she hasn’t been working on her iPad as long before wanting to switch to something else. I dread the day that she loses interest in these two activities. They are her life right now and have been for several years.

I should say that last night she turned on her computer for a few minutes. I don’t know what she did, but it wasn’t long.

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Feeling Guilty (Again)

This is not my “finest hour.” After causing two panic attacks this week, I frightened Kate tonight. After dinner, we came into our bedroom where I turned on the news, and she got on her computer for the first time in 8-12 months. About 7:15, she wanted to go outside. She apparently knew that I had closed up for the night and asked which door she could go out. I told her any one she wanted. She pointed to the front door, and I said that would be fine
Just before 8:00 I started to call her inside. She had been a bit bored today; so I decided to let her remain outside longer than usual. Just before 8:30, I went out to call her in. She was standing on the walkway in front of our house. At first she seemed a little irritated with me. I said, “Did you want me to call you in earlier?” She said yes and came inside. Then she broke into tears. She said she had tried to get inside but everything was closed and locked. Then I realized that she had not remembered that she had come out the front door which had remained opened the whole time she was outside. She said she didn’t know where I was. She said she thought I was trying to teach her a lesson. She just got out of the shower and seemed to be all right. I told her I felt bad for not calling her in sooner. Then she started crying again. She has her nightgown on and is sitting on the bed in tears.

I should add that I have tried to console her, but she keeps saying, “That’s all right. I’ll be fine.” She has also said, “It’s not your fault.” She is still crying.

The Next Morning

Shortly after my previous post last night, I got into bed with Kate and held her. She was still whimpering, but shortly she settled down. This morning I wanted to ask if she remembered the events of last night but felt it was wiser not to remind her. All is well now. I, too, am feeling better.

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Wondering When to Bring in Help

The past couple of weeks have been busier for me than usual. I accepted a request to serve as program committee chair for a dinner honoring our former pastor on May 17. I selected a great committee, but there are still things that require some extra involvement on my part. At the same time my responsibilities on a United Way committee that is working to engage more of our retirees to continue their relationship with UW through volunteering and financial contributions. We are hosting a luncheon on May 1 to be a kick off event in the recruitment of charter members of a new affinity group for retirees. I will be the moderator for that event. In addition, we have conducted a brief survey. I have been involved with those efforts as well.

This coming Monday is our annual Rotary golf tournament. I have always served as a volunteer and signed up this year. I am becoming more sensitive about leaving Kate. I have not seen any special signs that she might wander away, but I know that she can’t remember where I am. That could mean she worries while I am away.

For the first time, I am thinking about asking a couple of friends if they might help out when I need to be away. It would be especially nice if I could find someone who would take Kate to lunch each Monday when I attend Rotary. I have two possibilities. One is friend whom we have known from the early 70s when I was at UT. We are having lunch with her today. The other is staff member at our church. She is a friend of Kate’s. They became quite close when Kate was the church librarian. She is still working part-time and has expressed an interest in helping Kate. I might call on her.

I don’t think Kate would accept a caregiver right now, but she would easily accept someone she knows. She would actually love that.

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Salivation

I don’t think I have written much about Kate’s problem with salivation, but it has gone on for at least a couple of months, possibly more. The symptom that most people are likely to notice is that she goes through paper products right and left. When we are in a restaurant, she uses the paper napkins give to us. That includes both the napkin to use with the meal as well as the small cocktail napkin that often serves as a coaster for our drinks. She goes through hers rather quickly. Then she gets my cocktail napkin(s). At home she uses Kleenex and toilet paper and paper towels.

At first, I interpreted this as an acid reflux issue. I even sent a message to her doctor describing it as a reflux issue. Dr. Reasoner told me to double her reflux medication. If that didn’t work, she said to try an antihistamine which I did. She also suggested a diet change, but I’ve not tried that. I don’t think Kate is ready for that.

After months of this, I have decided that the problem is that Kate has forgotten that we swallow our saliva. She doesn’t like to do that. I decided this after watching her carefully all this time. I see no physical signs of reflux
A week ago I mentioned to Kate that she used to swallow her saliva. I also asked if this bothered her. She acknowledged that it does. She even agreed to try to swallow rather than spit. It seemed like she was having some success. It wasn’t that she swallowed all the time but that she at least did it sometimes. Now she seems to have gone back to her old ways. The big exception is when she focuses on something. Right now she is working a jigsaw puzzle on her iPad. She is not spitting out any saliva. I’ve observed her outside pulling leaves and pruning. It appears that she does not spit. It also seems like the most typical time for this is when we go out to eat. Of course, that is the time that I have the longest period to observe her.

At the moment, I don’t know what else to do. I think I will continue to mention that she can try to swallow and see what happens. Otherwise, it may simply run its course.

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Event planning

As a caregiver, I sometimes feel that I am an event planner. As we begin this new year, I have been reflecting on ways to address Kate’s boredom. That has led me to take several steps this week. One of our church friends who has been in a memory care unit for the past 2-3 years had a birthday earlier this week. We have not been to see her in quite a while because I was concerned about how Kate would react knowing that she (Kate) is traveling the same journey as our friend. The visit went very well. Kate made no mention of any reaction to her condition. She had done so on the previous visit, but she hadn’t given any sign of being disturbed by how she was doing. This time she didn’t say anything except in response to my comment about being glad that we made the visit.

The next day we visited two of my Sunday school class members who have not been able to attend for as long as three years. Since our class disbanded in December, I wanted to deliver a couple of remembrances for each of them. One was a list of those who were members of the class when we ended (both those who were active and inactive) along with an acrylic square with the person’s name, the class name, and the name of our church on it. The other was a list of all the deceased members of the class that I a aware of. It totals 95. I am sure there are some that I have missed. I thought it might be a good outing for Kate to go with me. When I asked, she gladly accepted. We had an hour-long visit with one of the members. She is 93 and in far better shape than I realized. The other visit was much shorter. This person is also in a memory unit. She knew us the last time we visited six months or so ago. She did not this time. She was quite confused. We left as they were preparing for dinner. Once again, Kate made no comment that would indicate this was a problem for her. I was relieved. It makes me think that we may be able to do it again though I am going to wait a while.

There are still three other class members I need to visit. I’ll try to do that soon
I have also made plans for us to attend the last performance of Ringling Brothers circus when it is here next week. We are taking a church secretary and her daughter who have often looked after Kate’s plants while we are traveling. In addition, I have booked a hotel room in Asheville for Memorial Day weekend. This coincides with our 54th anniversary and is the time we usually attend Asheville. Our church choir is having a fundraiser on February 10. It will be a Italian dinner with music and a silent auction. I’ve put that on our calendar. The next evening Renee Fleming will give a concert  in Nashville. I am planning to get tickets to that event today or tomorrow. I have already contacted our friends, the Greeleys, in Nashville to see if they would like to join us or a least get together earlier in the day for lunch.

Yesterday I also called someone at the Alzheimer’s Association. I have spoken with her before about locating a support group for people with dementia (PWD). She still doesn’t know of anything but expressed a willingness to help me put one together. After speaking with her, I called a local senior center where caregivers can get a break and/or support. I thought maybe they might have something for PWD as well. It turns out that they do. They have some activities for PWD while the caregivers are in a support group. I spoke with the director who sent me a calendar with their activities. She invited me to drop by at any time just to look around. They have a café where caregivers and their loved ones can relax. I noticed on their calendar that they have a support group for caregivers and care receivers with early onset dementia. It meets the first and third Tuesday of each month. This may be our best bet yet. I am eager to check it out.

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Pleasant New Year’s Eve

About an hour ago, Kate and I returned from lunch at Bluefish. For the past several months we have had our Saturday lunch there. It is several cuts above our routine places. Beyond the quality of the food (Kate always gets scallops with sautéed vegetables and sweet potato fries, and I get various things. I had my favorite today, Andouille sausage and shrimp stew and a special house salad that I love.), I find that it makes for a relaxing ride to and from the restaurant. It is a full 25 minutes each way. That seemed especially appropriate today. Kate got to bed a little later last night (shortly after 9:00). Consequently, she slept later than usual. She wasn’t ready to go to Panera until 10:45. I had to help her find some clothes. She was quite groggy.

We stayed at Panera for an hour before she was ready to go. (Over the past few weeks she has not wanted to continue in one place for long. The exception would be that she can stay outside a good while when the weather cooperates.) I asked if she were ready for lunch, and she nodded. Then we headed to Bluefish.

She was quiet at the restaurant, something that is not unusual. After the meal, however, we chatted a bit in a real conversation which is rare. The funny thing is that the conversation began with a strange comment from Kate. Out of the blue she said, “Now, let’s see what else you can blame on Dr. Pepper.” I said, “You think I blame Dr. Pepper for things?” She gave me a look that meant, “Are you kidding?” Then she went on to say that I don’t blame anything else; it’s always Dr. Pepper. I didn’t push her to explain as I knew that she was simply imagining that I discourage her from drinking her favorite beverage. I suspect this is something that has been on her mind for a while. The only other thing I had noticed is that occasionally she asks, “Is it all right if I have a Dr. Pepper?” I always say yes. From this point, however, we started to talk about how different we are but how well things have worked out for us. We talked about the fact that we had been able to overlook the things on which we differ because of the important things we share.

We also had a nice conversation with our server. I had asked her how she compared the quality of Bluefish with other restaurants around town. She gave me a good answer. I mean by that she was able to tell me how it stacks up in her mind compared to a number of other restaurants with which we are familiar. It confirmed what I hoped; she thinks it is a cut above most restaurants but not quite as good as several others. Kate and I believe it is unusually good. What had started as a slow day had now turned into one of those special moments that makes a day successful. We left the restaurant feeling good. I think that experience will set the tone for the balance of the day. I feel especially confident because she stayed outside pruning for an hour after we returned from lunch. That is one of the most therapeutic things she does.

I neglected to say something else that is becoming a pattern Kate is establishing. She came into the family room where I am listening to music and have the TV on to one of the many bowl games. When she sat down on the sofa with her iPad, she also had her charging cable in her hand. I think I had mentioned previously that she sometimes disconnects it to take when we are going out, usually to Panera. In some cases, like now, we aren’t going anywhere. When she sat down, she put the cable on the coffee table and said, “I want to take this with us.” I said, “You’re prepared.”

Something else that is becoming commonplace is closing doors to the bedrooms and bathrooms before we leave the house. I’ve never said a word to her about doing this, but I suspect that is something else that she believes I have told her she should do. This is just another reminder of the many things that a person with Alzheimer’s will do apart from the more typical memory issues.