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Kate’s Changing World

I imagine those who read this blog on a regular basis would say that Kate and I have maintained an active lifestyle throughout the period since her diagnosis. You are right. We are busy. Upon receiving the diagnosis, we made a commitment to do as much as we could with our remaining time. I think we’ve done pretty well. I have become an event planner for our daily lives. That doesn’t mean planning lots of special activities although there have been plenty of those. It means making the everyday activities special. Things like our morning visits to Panera as well as eating out for lunch and dinner have become highlights of every day.

We do live full lives; however, that doesn’t mean that life is the same as it used to be. Even before Kate’s diagnosis, she gave up her most fulfilling activity as our church librarian because the early symptoms were keeping her from performing her duties as she knew they should be done. She had served faithfully for 19 years and had made the library the “go-to place” for Sunday school teachers and children. Her academic credentials (M.A. in English and second Master’s in Library Science) combined with her professional background as an English teacher and school librarian made her a perfect fit for her position at the church. She took great interest in helping everyone who was looking for just the right book(s) for a particular occasion or person. She worked nearly fulltime as a volunteer. Stepping down from this position was a major change in her life.

At the time of Kate’s diagnosis, she was still driving. She continued to drive another two and a half years before having an accident. Until then, she was free to do pretty much what she wanted. She and her friend, Ellen, had lunch together every Monday when I was at Rotary. They also got together at other times during the week and often went shopping together. They shopped for plants. They shopped for clothes. They shopped for knick knacks for their homes.

I know from looking back at my journal that Kate experienced lots of frustrations related to her worsening memory, but there were no outward manifestations that anything was wrong. It was only after three years that Kate told Ellen about her diagnosis. Ellen had not even suspected.

After an auto accident in which she totaled her car, Kate’s world became much smaller. She was now dependent on me to get her where she wanted to go. Of course, she also got around with Ellen, but it wasn’t like having the personal freedom that driving her own car had given her.

She continued to be active in PEO. She attended their monthly meetings, hosted meetings at our house, and occasionally presented the program. She also served on a scholarship committee that had responsibility for interviewing and recommending candidates for scholarships and grants through the national office. She began to forget meetings and found it difficult to fulfill her obligations on the scholarship committee. As her memory worsened, she couldn’t remember the other members. I suspect that she had difficulty participating in the conversations. She no longer wanted to attend and ultimately dropped out.

That is when two of her existing activities came to dominate her life. The first was the yard. She had always enjoyed tending to her plants. Now she could devote more time to that interest. The other was her computer. For a number years she had enjoyed working on photos and had started work on a couple of family albums. She never came close to completing one, but she was very active in picking out and editing photos. Even today, when someone asks her what she is doing, she tells them she is working on her family albums. Like most of us, she also used her computer for emailing.

At some point, I gave her an iPad and introduced her to several jigsaw puzzle apps. Little did I know how important these would become in the years ahead. With the progression of her Alzheimer’s, working on the computer became more difficult. She was frustrated. She stopped checking emails. Gradually, she stopped using the computer.

That left two activities she could do on her own, pruning the shrubbery and working jigsaw puzzles on the iPad. She had no trouble filling an entire day between these two activities. They were things she could do without having to experience the challenges of coordinating with other people. She could work at her own speed, and nobody was telling her what to do.

Her friendship with Ellen was her only close personal relationship. Our children had grown up together in the same neighborhood. Ellen and her husband, Gordon, were our very closest friends in Knoxville. Then in 2013, Gordon died. Two years later in August 2015, Ellen had a stroke while visiting her daughter in Nashville. She has never been able to return and is now in memory care. We try to visit her once a month, but the relationship can’t be the same now.

So Alzheimer’s cost Kate her volunteer job at church. Then she had to give up driving. She lost the ability to use the computer. She lost her best friend to a stroke. Her world has shifted from one of high involvement to only working in the yard and on her iPad.

One of my concerns right now, is that she has been spending less time in the yard than she used to. The weather accounts for part of it, but I think it is more than that. Three years ago, we were visiting Lowe’s two to three times a week for plants. She spent a good bit of her time planting them. Finally, she was running out of places for new ones. She could, however, continue to prune. She started her pruning a year before my dad’s 100th birthday party in October 2013. Gradually that turned into just “pulling leaves.” Right now there are few leaves left on any of our shrubs. That may also play a part in why she is not spending time in the yard. Spring will be here soon. I am eager to see if her interest in the yard will return to the passion it was before. I fear that it won’t. That will leave only her jigsaw puzzles. Everything else she does is dependent on me. She needs me more than ever. Yes, I keep her busy, but there is no denying that her life is dramatically different than it was before Alzheimer’s.

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Things I’ll Never Know

So much of Kate’s behavior is normal that I am struck when she surprises me with something unusual. A couple of things have happened in the past day or so. The first occurred late Thursday when we were preparing to leave for dinner. All day she had been wearing two tops that didn’t match. At first, the one on top was inside out. I mentioned it to her, and she began to take it off. I asked if she wanted me to tell her. She said, “Absolutely.” Then I told her I didn’t think the one on top matched the one underneath. She said, “Who cares?” I let it go as I usually do.

As we were about ready to leave for dinner, she was still wearing the unmatched tops. I suggested she might change for dinner. She accepted my suggestion and only asked, “What would you like me to wear?” I brought her something else, and she put it on. As we were walking toward the door, I noticed that she was carrying the two tops she had just taken off along with a robe. I told her I didn’t think would need those; so she left the tops in our bedroom. She came back with the robe in her arms and took it with her to the car. I didn’t say a word. I’ll never know what motivated her to take her robe with her.

Last night something else happened. She had gone to bed about 8:00 while I took a shower. I usually turn out the lights and leave her in the bedroom to sleep while I turn on some music in the family room and read. I don’t usually hear from her until the next morning. About 9:15, she came into the family room and asked if I would come to bed with her. She said, “It’s easier for me to go to sleep if you’re with me.” I joined her.

When I got in bed, I held her. In a moment, she said, “You’re my daddy. I feel safer when you are here.” Then she said, “I’m your little girl.” I assured her that she was. A couple of times she said something else and called me, “Daddy.” Then she appeared to go to sleep.

When things like this happen, I try to imagine what was going on in her brain. I’ll never know.

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Sleeping Changes

It is 11:22, and Kate is just getting up. Even that is only after I started gently waking her about 10:50. I hate to wake her, but the sitter will be coming at 1:00, and we need to get lunch before then. As I have noted before, since coming down with the flu, she has been sleeping more. That has meant getting up later since she has still be in going to bed about the same time. Last night we went to Casa Bella for dinner and didn’t get home until 9:00. Still, this is unusually late for her to get up.

Although I think she should be over with the flu now, it may be that this is one of the aspects that is hanging on. She is not coughing much at all now, but once in a while she does. It sounds very much the way she did when she got sick almost two weeks ago. Her being tired may be another residual symptom.

I’ll continue to monitor her sleeping to see if this represents a more permanent change. I have to remind myself that two or three years ago, she was sleeping more than she has in recent years. The difference is that she was taking both morning and afternoon naps. She gave that up a good while back though she had a long nap while the sitter was here two days ago.

I have very carefully arranged for the sitter to come in the afternoon so that Kate and I could spend the mornings together. If she starts sleeping this late every day, I will spend much less time with her. On a day like today, I will have about an hour or so with her for lunch. Then the sitter will have her for four hours. When I return, it will be within an hour of dinner time. Then we are winding down for the day. That would be a big change for me. I’m not sure I am ready for that.

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Getting Back to Life as Usual

Yesterday Kate and I took what I would call our first steps in getting back to normal after the flu. Kate was up somewhat earlier, and we got to Panera before 10:30. The best news of the day was that Kate’s cough has virtually stopped. That made for a much nicer day. We went directly from Panera to lunch and were back home in time for the sitter. Kate is still tired. She got right into bed when we got home. That is where she was when the sitter arrived. I brought Mary in to say hello and told Kate I was off to the Y. She remained in bed and stayed there another two hours or more according to the Mary. That is the first time I recall her resting so long with the sitter here.

I went to the bedroom about fifteen minutes ago to see if she were still sleeping. I saw that she was up. When I walked into the bathroom, I noticed that she had had another accident and went to get a towel to clean it up. When I returned, she was standing by our bed with her underwear and a pair of pants in her hands looking a bit confused. I asked if I could help her, she nodded. I asked what she needed. She said, “Something to wear.” In moments like these she looks so helpless. It is painful to watch. I went to her closet and picked out a top to go with the pants she had picked out (the ones she had worn yesterday and thrown over a chair beside the bed). I gave her the top, and she proceeded to the bathroom to take a shower. She can be very groggy in the morning anyway, but the kind of confusion I saw this morning can only be another sign of Alzheimer’s. It is just a little thing, but I see little things like this making their way into our lives. There’s no way to stop it.

This afternoon Kate has a facial at 2:00. Then we have Broadway night at Casa Bella this evening at 6:00. I am optimistic about our having a nice day.

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More Confusion and Growing Dependence

After dinner tonight, we came back to the house and prepared for our normal relaxation time at the end of the day. I got Kate’s medications and put them on her bedside table along with a glass of water. Shortly, she came into the room and started to take her pills. She had only taken a couple when she must have turned around to do something else. Then she asked me if the remaining pills were for tonight or in the morning. This is something she has said on several evenings lately. Prior to this she simply assumed they were all the evening medications. Like many things, I can’t say what accounts for the change. It is just among the variety of things that go along with Alzheimer’s.

A little later, I got ready to take my shower when I heard her call, “Help.” It wasn’t a frantic call, but it was clear she needed something. I came out of the bathroom to see that she was struggling with her robe. It was inside-out, and her left arm was in the right sleeve. She couldn’t find the other sleeve. I got her straightened out and said, “Another case of teamwork. We work well together.” She thanked me and gave me a hug. It’s one more sign of her increasing dependence.

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Quiet Time With My Music

We had our usual lunch at Bluefish today. We had missed last week because of our trip to Fort Worth for her cousin’s funeral. I had thought about calling our server to let her know we wouldn’t be there but was caught up in all the preparations for the trip. I wondered if she would be worried. It turns out she was. She told us she has a number of customers who come in on a regular basis, but we are the most predictable. She knows about Kate’s diagnosis and wondered if we had run into a problem of some kind. (I tell most of our servers about Kate. I feel it is important for them to know in case something unusual happens. The most common thing is getting lost on her return from the restroom.) Anyway, our server was relieved that we were all right and gave us our usual hugs as we came in and when we left. The only other server who does that is the one at the restaurant where we eat on Sunday.

Kate didn’t talk at all on the way to and from Bluefish. Nor did she say anything during lunch except in response to our server, and that was minimal. As soon as we returned to the house, she brushed her teeth and then got into bed. It’s been almost an hour and a half, and she is still in bed. This would not have been unusual two or three years ago, but since that time she has not been napping until very recently, especially since we got back from Fort Worth. I have noted previously that she has recently shown other signs of decline. I can’t help wondering if we are in for something more in the upcoming months. We have been fortunate that her decline has been so gradual up to this point, but I am well aware that this can change at any time. Two friends who have lost their spouses in the past year to Alzheimer’s after they experienced a more sudden change that occurred in the last months of their lives.

I had washed clothes this morning and put them in the dryer before we left for lunch. When Kate started her nap, I put on a Chris Botti album, Impressions, and folded the clothes. As I have mentioned before, music has always been important to me. That has been especially true since Kate’s diagnosis. I find it very comforting. It’s also been a pleasant way to make a few last-minute edits to my blog for its launch tomorrow.

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Very Tired Today

Kate was in bed by 7:30 last night and was up about 8:45 this morning. She was in a very pleasant mood when we made our morning trip to Panera. She did something unusual. She brought three books with her. That is interesting because she doesn’t read. It also surprised me that she was taking them to Panera where she spends her time working jigsaw puzzles on her iPad. She only took one of them inside, It was a book about the history of our church. She did actually spend a short time looking through it. After an hour there, she said she was ready to go home. As soon as she came inside, she went directly to our bedroom where she took off her coat and got into bed. That is the second time she has done that since we returned from Texas Monday night. While this was a very common occurrence a few years back, this is most unusual nowadays. In fact, occasionally when I have thought she was tired and asked if she would like to lie down, she has said she feared sleeping too long.

She is clearly acting differently. She is having more trouble with names and shows some confusion. Yesterday she received a touching letter from her brother, Ken, along with a gift of a spinner. He noted that one of his sons gave him one for his last birthday. He keeps it by the coffee pot and spins it each time he makes coffee. He also indicated that it is a time of reflection in which he thinks about “family, friends, and the ‘circles of life’ that have brought me to my current understanding of my life.” He says it is a time for counting blessings and giving thanks. Then he suggested to Kate that “every time you ‘take a spin,’ think of the people you love. And know that I will be thinking of you and Richard every time I spin.”

Before leaving for Panera, I read the letter to Kate and showed her the spinner. We were both moved by his loving words. For me, it was especially touching as I realize just how far Kate is into her journey with Alzheimer’s and that Ken is at an earlier stage of this journey. Life and the people we love are more precious to all of us who travel this path, and we have lots of sentimental moments.

When I finished reading the letter to Kate, she said, “Now who is this from?” This was a painful moment that reminds me of the reality of this disease and where we are. Life is not the way it used to be, and the toughest part remains ahead.

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Post-Trip Symptoms

Kate was very tired when she returned home on Monday. She was in bed with eyes closed before 7:30. Yesterday she was up at 7:30 and ready for Panera shortly after 8:30. She wanted to come back home after an hour and got back in the bed where she remained another hour before wanting to go back to Panera. During the balance of the day she got along normally. She was in bed about her usual time last night, around 8:30. This morning she slept until after 10:00. We were so late getting to Panera that I ordered lunch along with Kate’s usual muffin.

This was the day for the sitter, so I made sure that we were back home before her arrival just before 1:00. I went to the Y and then made a stop by the grocery before meeting Mark Harrington for coffee. We talked about my blog that I intend to launch this Sunday, the seventh anniversary of Kate’s diagnosis.

When I got home and the sitter had left, Kate was ready to leave the house. She picked up her iPad and got her coat. She didn’t say anything. I know the signs. They signal she wants/expects us to leave for someplace, usually Panera. This has become something of a habit on the days when the sitter comes. I am sure that is because a good bit of her time with the sitter is spent at the house, especially right now when the weather is quite cold. My presence is her sign that she can go back to Panera. Often it is only 30-45 minutes before we go to dinner. That was the case today.

Until this point, I felt everything was going well. At dinner, however, she asked me where we were. I thought she meant the restaurant and told her. She gave me a look that told me that wasn’t it. I said, “We’re in Knoxville.” To the best of my knowledge she has only asked that question when we were traveling in another city; so I was surprised. During the meal, she asked me the name of the restaurant and the owners of the restaurant. She never remembers these, so I wasn’t surprised at that. As we were finishing our meal, she asked me the way we would walk out of the restaurant. I pointed to the front door. In another minute, she asked me where we were. Once again, I told her we were in Knoxville. After paying the check, she again asked me where we would leave the restaurant. I pointed to the front door and got up. I said, “Follow me. I’ll show you.”

When we got home, she got ready for bed, put up her iPad and got under the covers about 7:30. I am wondering if these things are in any way caused by our travel over the weekend, or if this is just another sign of her decline that would have occurred anyway. Regardless of the specific cause, for me it is a sign of change and in a direction that I don’t like. It tells me that 2018 is going to be a different kind of year.

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Memory, Confusion, and Dependence

Earlier today I mentioned an experience at lunch when she didn’t recall that her cousin Chester had died and that we had attended his funeral two days ago. That is a rather dramatic experience that she would have recalled several years ago. I am still somewhat surprised that it didn’t ring a bell at lunch.

Before going to dinner this evening, I told her again about the pictures I had sent her Ken and Virginia as well as our son. She said, “You should also send them to Chester.” I told her that he had died last week. She said, “We were just with him.” I assume she was referring to this past weekend and said, “We were there for his funeral service.” She hadn’t remembered. This is clearly a change from several months ago. I have been noticing the change and commenting on it, but it is still somewhat surprising when she says things like this.

Her increasing loss of short-term memory is not the only change. She seems more reflective. She talks more about the past, her family, our relationship, and about me specifically. She expresses more appreciation for the things I do for her. She is also much more accepting of my suggestions regarding her clothes or whether she can work outside and, if so, where and with the clippers.

In general, I would say there is a striking change in her dependence, acceptance of her dependence, on me. She accepts  my help more readily and even asks for it. That is especially true with respect to her clothes. For example, for quite some time, she has put on clothes that are backwards or inside-out. That seems to be more of a problem now than in the past. Today,  she has asked me to help her with her coat when she couldn’t easily put it on. Tonight, she started to put on her night gown. She said, “Wait a minute, I might need your help with this.” She was holding it up and trying to decide which was the top and which was the bottom of the gown as well as the front and back. She started getting frustrated and asked me to do it. I finally put my hand through each of the sleeves and grabbed her hands and guided them through. I can see that this is going to be worse very soon. She got into bed and then said, “I can’t live without you,” something she has said many times along the way. Right now, it takes on a more serious meaning.

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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.