Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

More Asking Permission

Two or three times this afternoon and evening Kate has asked my permission to do something. One of those occurred when we returned from dinner. As she got out of the car, she noticed her Yeti coffee cup on top of our garbage bin. She looked at me and said with the inflection of a question mark, “I’m going to take this inside.” I said, “That is fine.” Before getting in bed, she asked, “Can I take off my shoes?” The other occurred this afternoon when she asked me if she could work on her album after getting home from lunch. Again I told her that was fine.

I realize that telling her something is fine is itself reinforcing her behavior. I really don’t want to do that. On the other hand, I haven’t wanted to question her as to why she would ask me because she seems so sensitive about my asking her why she does things. She doesn’t know herself.

Posted on

Asking Permission

Despite her objections that I am trying to control too much of her life, it is interesting that Kate is increasingly asking if it is all right for her to do things. Two examples occurred at dinner this evening. After ordering, she asked me if she could start “my album tomorrow.” I told her that would be good. Then I asked if she were talking about her Chautauqua album. She said yes. After dinner, she pointed to the parsley that she had taken from her plate and placed on a paper napkin on the table. Without using words, she was asking if she should take the parsley home for her compost. That is what she always does. Why she happened to ask about doing that tonight I can’t imagine. I told her that she could take it if she wanted to. She said something like, “I don’t have to.” She brought it with her when we left.

When we got home, we both sat in the family room where I watched the news on PBS while she worked puzzles on her iPad. When it was almost 8:00, I told her I was going to take my shower. She decided to go into the bedroom. She sat down on the bed and pointed to the charging cable for her iPad. She didn’t say anything. I didn’t understand what she meant but said, “Yes.” When I said that, she reached down to disconnect the cable from the surge protector. Then I asked what she was going to do. She asked me what I wanted her to do. I told her she could leave it plugged in, that we were “not going anywhere now.” Then she said, “What am I going to do now?” I told her that it was getting near the time she would go to bed and that she might put on her night clothes. She indicated she would do that. Then she picked up her iPad and started to work on it in bed. After my shower, she was still in her clothes. I walked over to her side of the bed. She pointed to the sweater she was wearing. Then she said, “This or my night clothes?” I said, “Your night clothes.” In a few minutes, she got up and changed. Just another illustration of using minimal words and asking for my guidance even though she still wants to be very independent.

Yesterday afternoon, Kate and I were talking about some of our memories when I suggested that we start a project of writing down our memories from our life together. She liked the idea. This afternoon she had reached a point when she was ready for a change. We had been to Panera this morning. Then we had lunch. When we got home, she pruned in the yard. Then she had worked on her iPad for a while. I could tell she was getting bored. Instead of asking if she would like me to take her to Panera, I asked if she would like to work on our memory project. She liked the idea and suggested we do it at Panera. We did it. She told me from the start that she would have to depend on my memory. I suggested we try to write down how we met and something about our first date. Then we started a second section on places we have lived. We only addressed the first place in Fort Worth. I could see she was getting tired and suggested we stop. I told her that I didn’t want us to think of this as work, that we would not have to work on it every day, just as we felt we wanted to. This first effort was better than I might have predicted.

Posted on

More Signs of Sundowning?

Since returning from dinner, Kate and I have been sitting in the family room. She has been working puzzles on her iPad. I have been watching the news. She has had a little problem taking her pills at night. It seems to cause a little reflux. I decided to divide her pills so that she takes half now and the other half a little later.

After she took them she got up and went to her room. She came out in a few minutes with another top over the one she had been wearing. She indicated she was ready. I asked her, “For what?” She told me, “Anything.” I told her I thought she was going to get ready for bed. She said it was too early. Then she went to our bedroom and said, “I’m just going to lie down in bedroom with my iPad for a while.”

I walked back to take my medicine. As I was leaving the room, she called my name and pointed to her iPad. I didn’t know what she was communicating and walked over to her bedside. She asked, “Should I take it with me?” I told her we weren’t going anywhere now. Then she asked me what she should do with her iPad. She asked if she could just put it down beside the bed as she usually does. I told her that would be fine

This is another occurrence of her acting as though we are going someplace and/or that we have spoken about doing something when nothing of the sort has happened.

Posted on

Back Home

We arrived home again at 8:15 last night. All-in-all the Christmas visit had gone well. Kate seems to have enjoyed herself.

I spent about an hour checking email, unpacking and taking a shower before settling in to watch a Cowboys game on TV. I hadn’t seen Kate seen we got back and went to look for her. I found her in bed in the middle guest room working puzzles on her iPad. I asked if she were planning to come to bed. She said, “I thought you wanted me in here.” I may not have mentioned it before, but this is not the first time this has happened. This was the first time in a long time though.

On the trip home after a stop for lunch, Kate said, “I know I’ve said this before, but I am really excited about moving to Texas.” I said, “Yes, you have mentioned that before, and I know you are excited even though it will be a long time.” Neither of us said anything more. Jesse told me that she had mentioned moving to Texas in addition to the time she said something on a previous trip to Memphis. I moved behind Kate and shook my head to indicate this wasn’t so. They didn’t dispute or feed this conversation.

This morning was our monthly Y breakfast. I didn’t wake up until 7:06. I got up right away and reminded Kate. She initially said she wanted to go and got up to go to the bathroom. She came back into the bedroom and got in the bed. Then she told me to go on ahead without her which I did.

Sometime after getting home from the breakfast, I checked to see if she were up. She was. I noticed two pair of her black slacks thrown on my side of the bed. Then I found another pair on the floor beside the toilet in the middle bathroom. When I found her, she was wearing a pair of black slacks. I just hung up the slacks I found.