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More Frustration, Boredom, and Discouragement

Kate was up early again this morning and ready for Panera. She is not in a good mood. She is depressed. As usual, she won’t talk about it at all. She just shrugs her shoulders when I ask what is wrong, how I can help, etc. We spent an hour and a half at Panera before she wanted to come home. She is in bed resting. I am going to get her up in a few minutes to take her to lunch.

I have also bought tickets to a movie at 3:00 this afternoon. This is a movie she told me Friday she didn’t want to see. I am going to try it anyway as a diversion, a way to get her someplace other than home or Panera or one of our restaurants.

Coupled with her boredom this week has been more irritability than usual. In fact, I have observed what I take to be less humor in responding to me and a more genuine expression of irritation with me.

I can’t recall a week during which she has been this way before. I must admit to being discouraged this moment. I am hoping she bounces back soon but also worried that I am seeing signs of a further transition.

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Frustration and Boredom

My follow up to yesterday is only to say that it things didn’t get better for the second day in a row. As always, I try to figure out why when things are not going well. Sometimes I have a clearer idea than others. Often I’m just not sure. Yesterday, for example, she seemed to start out with a less cheerful demeanor. That was even before any particular event occurred that might have brought her down.

That was different once we got to Panera where she was working on her jigsaw puzzles. Repeatedly she kept hitting something that took her out of her puzzle. That particular screen has a “Back” arrow in the top left-hand corner, but she doesn’t see it. I just hit it, and she is back to the puzzle. Other times, it is a little more difficult, and I just hit the “Home” button on the iPad. That takes me to the screen with all the app icons. I select the one she had been working on (if I can remember it), select it, and give it back to her. As noted in the past, she never asks for my help. She just closes the iPad, puts it on the table, and looks frustrated.

To make matters worse, we had a rainy day. That meant that she couldn’t work in the yard. Since her two main activities were not available, she spent more time in bed. I tried to interest her in a movie, but she didn’t want to go at least to the one that I thought might be the best possibility for her.

We went to our regular place for pizza. When we returned, I put on a Katherine Hepburn movie. She seemed eager to watch. A few minutes into it, she said she was sleepy and got into bed fully clothed. She didn’t get up until this morning. She seems normal this morning. That means she isn’t in a bad mood although we got off to a rough start when she had dressed in some clothes that I didn’t think she would have wanted to wear since we are driving to Nashville to have lunch with our friends Tom and Angie Robinson. This was one of those times I put clothes on the bed for her. I took her to the room and left her to put them on.

When she came out she was wearing the same thing she had been wearing. That happened two times before we got it right. You might think the easy answer is for me to stay with her while she dresses; however, she doesn’t like for me to do that. She feels she doesn’t need my help.

We are now at Panera before driving to Nashville. On the way here, I decided to tell her that today is my birthday. (Jesse had sent me a text and plans to call while we are on the way to Nashville. I didn’t want Kate to learn about my birthday that way because I feared that she might feel bad for not remembering.) I said, “Today is my birthday. I am 77. Did you ever think you would be married to someone that old?” She said, “I was just thinking that.” That is all she said. No surprise. No emotion. It doesn’t make me sad for me, but for her.

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Ups and Downs

After that rough day on Monday, Tuesday turned out to be a good day. All day she seemed to be in a better mood.

Yesterday  was another matter. Once again, it involved (at least partially) her problems with the iPad. She continues to hit something that take her to a different screen (window) from the puzzle on which she was working. In almost every instance I have been able to see a button that will get her back to the puzzle. I hand it back to her, and she goes back to the puzzle. Eventually, sometimes in minutes, she encounters the same problem. It does no good to explain how to get back to her puzzle because she can’t remember what I say. In addition, I can’t explain how she got out of the puzzle because I am not working the puzzles and don’t know the layout. Even if I did, she wouldn’t remember it.

We went to Panera three times again yesterday. Kate got up early and was ready to leave before 8:00. We got there about 7:45. By 10:00, she wanted to leave. We came back home where she pulled leaves for a while. Then she came in. She asked me what she could do. I asked if she wanted to go back to Panera. She said she did. We remained there until 11:30 when we went to lunch.

When we came home she pulled leaves for a short while. Then she came inside and worked on her iPad. She grew bored again and wanted to get out of the house. We went back to Panera where we remained until shortly after 4:30. We were home until 5:30 when we left for Casa Bella for Broadway night. At home she worked a while on leaves until I called her into the house to get ready to leave. She forgot and remained outside. I had to go back two other times. When I reminded her we were going out, she said she didn’t know what she would wear. I told her I picked out her clothes. She came in and started to take a shower. I told her we didn’t have time for that. She then asked again about her clothes. I took her to her room where I had put the clothes on the bed along with her shoes and socks. I left her to get dressed. Soon I heard the shower. I went in, and she was about to get in the shower. I reminded her we needed to leave. I took her back into her room. She had not remembered that I had put out clothes. I remained with her while she dressed. At one point, she apologized for making me wait. I told her I didn’t want her to worry about that, and that I was fine. I told her we were going out to have a good time together.

We got there on time and had a good evening. The Adairs, with whom we usually sit, were not there; so we sat with another couple that we had met a couple of times before. We had a good time although Kate did not appear to be as enthusiastic as she has been after some of these evenings. It makes me wonder if the difference was a change in Kate or, possibly, that we were sitting with people she didn’t know as well.

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Visiting Friends

Yesterday we visited Ellen, Kate’s best friend who now lives in Nashville. We have been visiting her every 4-5 weeks since she had a stroke two years ago this coming August. In February, she suffered a couple of seizures that have been a setback after she had been making a good recovery.

On Tuesday evening, I received a text from Jennifer, her daughter, letting me know that Ellen had declined noticeably since our previous visit a month ago. That visit was the first one we had made since her seizures and since she had been placed in memory care. At that time, we were not able to detect any memory issues, but it was clear that her speech had deteriorated since our previous visit. That makes conversation difficult. Prior to that we were getting about 60-75% of what she said.

During yesterdays visit, we were only able to understand about 20% of what she was saying, if that. We did best when asking her yes or no questions. Ellen’s decline comes at a time when Kate is also declining. I can’t help wondering how long we will continue these visits. My intention is to do so absolutely as long as possible. That would mean as long as it seems pleasurable to both of them.

Interestingly, Kate didn’t seem to notice the problem with Ellen’s speech to the extent that I did. That suggests to me that she doesn’t understand much anyway; so the fact that she can’t pick up all the words is hardly noticed. All-in-all it was a good visit. We enjoyed seeing her, and it appeared that she enjoyed seeing us.

Before returning home, we stopped to see Ann and Jeff Davis whom we first met at Wisconsin where Jeff and I were in grad school. Later Jeff and I were colleagues at UT. Our daughters are the same age, and Ann became Kate’s best friend before they moved away to Dayton, OH. They moved to Nashville about twenty years ago. We have not kept up with them until very recent years. I told them of Kate’s diagnosis about two year ago. Since that time we have made a deliberate effort to see them more regularly.

Yesterday’s visit with them was a good one. We went to dinner and the drove back home. We were in the restaurant almost three hours. At first, I was a little concerned because Ann seemed to be looking at me more than Kate. That has been an issue in other relationships we have. Some of that is rooted in the fact that I talk more than Kate. I believe Kate’s Alzheimer’s has also made it more challenging for Kate to assert herself in conversations. I imagine that this sometimes occurs because she is not following the conversation. Other times, it may be that she isn’t able to interject her comments quickly enough to be recognized. She is slow about everything; so I don’t find it surprising that she might have a longer latency period before being able to get her words out. Kate still has great admiration for Ann. I look forward to maintaining this relationship as long as possible.

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Not a good day

We have just returned from dinner at Chalupas, our favorite Mexican restaurant. We go there about once a week, usually on Monday night. Sometimes I think of it as a good place for Kate when she is down. Tonight was one of those occasions. I wish I could say that the experience uplifted her spirits. It’s not just the food. In fact, it’s not even primarily the food. We like the owner and his family, all of whom work there at least from time to time. School is out, and all three children were working tonight.

I wish I could explain why Kate has been down today. I do know that she seemed all right this morning when we were at Panera. The first sign came just before noon when I told her that it was time for me to leave for Rotary. She didn’t say a word, but she looked dejected. This follows a few recent signs that she is bothered when I need to go somewhere. She feels trapped at home.

The need to get out comes up periodically in the afternoon. She comes into the kitchen which I use as an office and asks, “What can I do now?” As I noted in a post yesterday or day before, I generally give her options. The one with which she connects is always going to Panera. That occurred without words this afternoon when I returned from Rotary. She met me in the kitchen and simply said, “I’ll meet you outside.” That is her instruction that she is ready to go to Panera. I told her I would be right with her. I packed up my computer, our iPads, our cups, and met her outside. We were at Panera about an hour when she was ready to leave. During the time we were there, she was experiencing frustration with her iPad. The problem continues to be that she hits a wrong button while she is working a puzzle. That takes her to a screen that she doesn’t want. She doesn’t know what to do. She never asks for my help. She just groans and/or closes her iPad and puts it on the table. Often she lets me (somewhat reluctantly it appears) to get her puzzle back. She then works a while longer until it occurs again. After several tries, she is ready to leave. That is exactly what happened this afternoon.

On the way home I told her that I would drop her off and then go to the AT&T store to see about a new cover for her iPad. She has an old one that won’t prop up so that she can more easily work puzzles. When I told her this, she told me she thought we were going to eat. At that time it was only 3:50. She looked dejected and made audible groans which is common. I tried to talk with her and look for a way to help. She didn’t want to talk at all. This is actually an extension of an old habit she had prior to Alzheimer’s.

When I got back home, she seemed even more discouraged. I asked if she would like me to play a recorded show of Golden Girls. She wasn’t excited about that but agreed. At 5:30, we went to eat.

Right now we are in our bedroom where I have the PBS Newshour on. Kate is in bed working on her iPad. She seems content at this moment. No groans. No dejected looks. I hope this continues. Ordinarily, we do this routine, and she seems to enjoy it. I hope that is the case tonight.

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Panera’s Appeal

After coming in from the yard, Kate got in bed to rest a while. It wasn’t long before she came into the family room where I was about to get on my iPad while listening to Louis Armstrong, Tony Bennett, and Chris Botti. She came in and said, “What can I do now?” As usual, I said “There are several options. We could do something together. Maybe we could find a movie to watch on TV. We could also go to Panera.” Before I could go any further, she said, “Could I take my iPad?” I said, “Of course.” She: “That’s what I really wanted to do anyway.” And that friends is how we got back to Panera for the second time today.

As I pulled into a parking space at Panera, I was telling Kate about a Facebook post by the daughter of an old friend of ours. When I finished, Kate said, “I want to get on Facebook.” I told her I would be happy to show her how, that it is easy on her iPad. Then she said, “I’ve got it on my iPad? But I don’t have my iPad with me.” I told her I had it in my computer bag. She gave me a big smile and said, “You think of everything.” Occasions like this make me sad knowing that we had just finished talking about coming to Panera so that she could use her iPad, but she simply can’t remember.

It might seem strange, but it is clear that Panera has assumed a special place in her life and mine as well. You might think that she would have chosen a movie. That tells me what I have been thinking for a while. Movies are simply not as rewarding to her any more.

In an email from Kate’s brother this morning, he identified with Kate’s dependence on her iPad and pulling leaves. In his case, it is his computer and working on photo albums. Those are his two big activities, and he is becoming less able to do these things. Right now he is working with his wife to complete as many family photo albums as he can before he loses this ability entirely. They are wonderful summaries of all his family from his parents and grandparents to his grandchildren. He has created a treasure. He also hopes that they will help to jog his memory for people and events as he declines.

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Home Care Part 2

I took the next step in the pursuit of home care for Kate. I called a agency that was a top recommendation of the social worker at Kate’s physicians’s practice. I spoke with the son-in-law of the owner(s). They introduced this national franchise to the Knoxville area in 2011. The first one began in California in the late 1990s.

I explained our situation to and told him that I was planning ahead. I explained that I did not envision initiating home care in the next couple of months. I also told him that I would probably start on a small scale, perhaps just four hours one day a week and increasing the service as Kate required more attention or I needed to be away from the house more.

He told me about their services which entail everything from simply being in the house as a sitter to cooking, bathing, dressing, taking care of medications, etc. They charge by the hour for most things. There is a two-hour minimum at $27.50 hr. Four hours or more is billed at $21.50 hr. Fulltime (24/7) is billed at $19.50. They have another fulltime option that would involve two people. One would work 24/7 for three days, the other four. I think he said that is billed at $272 daily.

He asked if he could call back in next week to see how things are going. I told him he was welcome to call back, but I emphasized that I didn’t envision moving forward in the next couple of months.

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Home Care

For several weeks I have thought about contacting the social worker at Kate’s physician’s practice to talk about options for home care. She was busy at the time I called but called back a short time later. I explained our situation and asked if she had any thoughts about potential sources of home care. She gave me three names. The first two are national franchises while the last one is a listing service for people who provide care and those who are seeking home care. I have been thinking about an agency for simplicity, but I want to keep all options open for the time being. I know that in the long run, it will be significantly more expensive to hire an agency. On the other hand, it would require a lot of me to manage a number of caregivers as well as their payroll.

I told her that our son is a social worker and is employed as a geriatric care manager. It turns out that she is also a GCM and has a private practice independent of the physician’s practice. I don’t immediately foresee the need for me to engage her services, but it is nice to know. Right now I think I have access to all she knows through the physician’s office.

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Email to Jesse and Kevin

Dear Jesse and Kevin,

I am so glad we were all able to be together for Brian’s graduation. I appreciate the efforts of each of you to make this a special occasion. A year ago, I would not have expected that Mom and I would have been able to make it. I am grateful that I was wrong.

That said, I am sure that both of you could see that life is different for her now. The change is even more dramatic than at the time Kevin and Taylor were here in March. We are now entering the first chapter of what is the portion of this journey that most of us think of when we hear the word Alzheimer’s. Up until now, we have been able to lead what appears to outsiders as a normal lifestyle. (It has been far from normal for us.) We have been very active and have enjoyed ourselves. Mom is now deriving less and less pleasure from things that in the past have provided her a great deal of pleasure and satisfaction. As you know, this doesn’t get better.

Our travel over the past ten days has been hard on her. It has led to her being very tired and confused. I have heard others talk about the challenges of travel, but up until now, those issues have been mostly the burden on me. The burden is now shifting to her without any relief on me. Kevin, I really hated to leave the swim meet the other night, but I was really feeling for Mom. She is very sensitive to the heat. More importantly, she does not know what is going on around her. Not that it would have made any difference but, she wasn’t able to see any of the races themselves. I felt bad that I hadn’t brought her iPad to the meet. She would have been able to entertain herself in that way. Neither did I have it for her at the graduation. Speaking of which, as we left the graduation the other day, Mom said, “Tell me again why we were here for this thing.” She hadn’t realized at all that she had been to Brian’s graduation. I am equally sure that she didn’t even know that it was a graduation.

While we were there, she never completely realized that she was in Lubbock. As we approached our landing on Saturday, I said we’re coming in 25 minutes early. She asked me where we were coming into. When we landed in Knoxville last night, I said, “Well we’re here.” She said, “Where?” I told her Knoxville. She said, “Where we just left?” I told her that was Atlanta.

On the way home, we went to Chalupas for dinner. After we got home, she worked outside for about 30 minutes. This morning that was the first thing she wanted to do. Usually we go to Panera first. She was outside about an hour after which she came in and showered. Then we went to Panera and to lunch. Since our return from lunch, she has been outside. This is one thing that she will be able to continue doing for a while longer. I am thankful for that. She is having more trouble with the iPad. She keeps hitting buttons that take her out of her puzzle, mostly for offers to buy other puzzles. Then she doesn’t know what to do to get back. Though I encourage her to ask me to help her get back to her puzzles, she thinks she is bothering me. When she can no longer use her iPad, she will have lost half of what entertains her now. I hate for that day to come.

Looking ahead, I am still planning to make our trip to Chautauqua in July. That is four weeks from tomorrow. While I don’t think this year’s stay will be like those in the past, I think she will feel comfortable being on the grounds. I think I told you that we bought a bench for the amphitheater that is being reconstructed for this year’s session. Unfortunately, it looks like the benches won’t be ready. That was one of my primary motivations for going this year so that Mom could see where our bench is located. Of course, I need to keep in mind that at this point, things like this don’t mean anything to her. It’s really for me.

The next planned trip is to attend the TCU homecoming in October. I am not at all sure that will happen. It all depends on how Mom is doing. At this point, I don’t think we will make it. If that trip is not possible, that means that the trip to Lubbock for Christmas will be out as well.

As I close, I want to reiterate what you have heard me say so often before, Mom and I have been very fortunate that her decline has been so slow and without any special complications. I continue to treasure not only the memories of our whole marriage but also those since her diagnosis January 21, 2011. One of the few things she said about our trip was how proud she was of both of you and your families. To me, that alone was worth the trip. I know that even now she doesn’t remember the details of the trip or, possibly, that we even took the trip, but the feeling she has for the two of you remains. That’s another thing for which I am grateful.

Love,

Dad

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Travel Report

At the moment, Kate and I are sitting in a booth at Panera in Lubbock. We just came from I Fly where Kevin, Rachel, and their three children and I flew in their simulated sky diving experience. It was fun to do. Kate did not participate. She watched from outside the glass-enclosure where we “flew.” She went with us to the required training session before hand. She told the instructor that she had done it before. Of course, she hadn’t. It is just one of the many things she can get confused about.

Before our flights, we had gone to lunch where Kate had a turkey sandwich and a cookie. After we finished at I Fly, she said she was hungry; so I thought this would be a good place to pass some time.

We are meeting Kevin at his house at 4:30. From there we are going to the grandchildren’s swim meet. Last year about this same time, we attended a similar meet.

This trip has caused me to reflect a little more about Kate and her ability to travel. A year ago, I wasn’t sure that we would be able to come back to Lubbock at all. Neither did I believe we would make it back to Chautauqua. We are leaving for there in four weeks. I also have tentative arrangements for us to visit Fort Worth for homecoming in October. I am confident about our making the Chautauqua trip but less confident about the homecoming trip.

I think this trip has been hard on Kate. As I have noted a number of times before, I can’t imagine how she must feel not remembering so many people and not being able to remember any of the short-term things that are happening all around her. She was very tired last night when we finally got home from dinner around 9:30. She slept well and got up around 8:00. After breakfast, we went back to our room where she immediately got into bed. She remained there until 11:00. She seemed pretty tired since then although I don’t see any signs of that right now. She is working contentedly on her iPad.

While I have been checking email and responding, she has had several frustrating moments when she has hit a key that takes here out of her puzzle. One of those is the “Home” key that takes her to Siri. The other is a button that gives her the option to buy more puzzles. These are not new occurrences. They happen occasionally all the time. I just fear that they are a signal that she is on the way to losing her ability to do one of the things that occupies her the most. It is the iPad and her yard from which she derives the greatest pleasure. I hate to see her lose these two with nothing left to replace them.

It would not be surprising then that I am feeling a sense of sadness and a bit of anxiety about the future. For the first time, I am really facing Alzheimer’s in the way that people imagine. It is not coming as a surprise. It is just that the reality is more dramatic than the knowledge that it will be here one day.