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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.

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Wanting to Help

Among the first signs I noticed related to Kate’s Alzheimer’s was her lack of attention to some of her major household responsibilities. The most obvious one was that she often didn’t have dinner ready. It also included less obvious things like washing clothes but leaving them in the washing machine for a day or two before putting them into the dryer. Over the years, I have jumped in to take care of these things without our ever talking about it. It was as though she didn’t notice that I was taking care of meals, the clothes, and other household chores.

Thus it has come as a surprise to me that on several occasions recently she has asked if she could help me with something. Two of those occurred yesterday. She saw that I was taking clothes from the washer and putting them in the dryer. She asked if she could help. I felt little need for the help. This is a pretty easy task, but I was so pleased with her offer that I said yes. Later, I brought the dry clothes into the family room where I usually listen to music while folding them. I had already separated her things from mine when she walked into the room. Once again, she asked if she could help me. I quickly said yes. She picked up all of her things and walked back to her room. I later discovered that she hadn’t folded or picked up her clothes, but I was happy with her offer to help. That and her enjoyment of Darkest Hour that we saw yesterday afternoon made yesterday another good day.

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Good Moods Make for Good Days

In my previous post I failed to note that Kate was in an especially good mood yesterday. I am sure that played a significant role in my own sense that we had had such a nice day. It is not that she is usually irritable. She does continue to show more irritability than before her Alzheimer’s, but those moments don’t last long, and, fortunately, at those times she is not difficult to get along with. That said, sometimes she is especially happy and cooperative. That is the way she was yesterday.

She also continues to be reflecting or thinking a lot. Over the course of her illness she has occasionally said something that sounds like we had just been talking about something and expects me to know what she is talking about. There were a couple of those experiences yesterday. She said, “I’m going to be very careful.” Instead of acting puzzled and asking what she was talking about, I said, “That’s a good idea.” She said, “I’m going to stick close to you whenever we are in public.” I told her I would watch out for her. She said, “I know you will. I feel safe when I am with you.”

When she says things like this, as she has done in recent weeks, I tend to impute more to her actions than may be justified. In this case (as in others recently), I believe that she is grappling with a sense that she is less and less in touch with her environment and the people around her. It may be her way of expressing her own insecurity. Overall, she seems not to associate her challenges with her diagnosis, but she still knows she is not normal.

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Coming Home

I am glad to report that our travel home yesterday was uneventful, that is, we had no trouble at all. Anytime we are facing activities or appointments that have definite time demands like airline flights, I worry a little about making sure Kate is ready. It may seem strange, but we actually encounter fewer problems like that now than in the past. I find that Kate really works harder to get ready than she used to. That is part of a general pattern. It is as though she recognizes that she is not in control and feels the need to work harder. I don’t mean that she appears frantic about it. It is just that she seems more attentive to doing things “the way they should be done.” For example, until Alzheimer’s began to take its toll, she always made up the bed shortly after she got up. Over the years I have heard her say, “My mother taught me to always make up the bed.” She stopped that for quite a while. Within the last six months she has begun to partially make it up once in a while, not daily and not completely. She pulls the covers over the bed and throws the pillows in their approximate places. She also hangs her clothes up more regularly though she doesn’t hang them in what I consider to be the “proper places.” Although it saddens me somewhat to see that she has to work hard to do the right thing, I believe it is a good thing that she is taking more responsibility. She still wants to be independent. I want that to continue.

She was still sleeping soundly yesterday morning at 8:15 when I woke her up. Kevin came over for a short visit before we went to the airport. She didn’t want to get up, but she did without a complaint. Kevin dropped by at 9:15. She was ready, and I had everything packed. That gave us a brief time to be together before leaving at 10:00.

The rest of the trip went smoothly. We arrived in plenty of time. I had been a little worried that we might be rushed, but we had sufficient time to gas up the rental car, return it to Avis, check in, have lunch, and still be early enough to have some waiting time before boarding. This eliminated any potential stress that might have occurred otherwise.

We stopped by our favorite Mexican restaurant on the way home from the airport. Our server last night was a comparatively new one. It turns out that she is from Venezuela. I had a nice conversation with her entirely in Spanish. We told her that we had visited Venezuela many years ago. I think she liked that. We also bumped into an acquaintance from the Y. He was with his wife, children, and grandchildren. We had a nice conversation with them as well. For me it was just another reminder of the value of eating out.

Kate got into her night clothes pretty quickly and right into bed. She worked puzzles on her iPad for well over an hour before calling it quits for the evening. She and I both slept well although she coughed a good bit during the night. She seems better this morning, but we are both still struggling from the cold we got three to four weeks ago.

We got right back into our routine this morning. We made it to Panera about 9:30. Kate was ready to come home at 10:30. After a short break, she wanted to work in the yard despite the fact that it was 36 degrees. At least the sun is shining brightly. She has been out there almost an hour. I am about to call her in so that we can make our way to lunch.

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Amidst the Joy of Christmas There Are Moments of Sadness.

This has been a special Christmas season for us. My feelings are no doubt influenced by the belief that next Christmas Kate may be less able to enjoy it. Since her diagnosis we have tried to “live in the moment.” That has carried us through the rough spots along the way and continues to do so. At the same time, there are moments when the progression of Kate’s illness is evident in new ways. When this happens, I feel sadness overtaking me for a short time. That happened in the car after lunch today.

It occurred when I told her that we had plenty of time before our haircuts at 3:00. That would give her time to work in the yard. She tried to get the words to tell me she wanted to do something else. They wouldn’t come. At first, I didn’t guess what she was trying to say. Then I asked if she wanted to work on her albums. She did. I told her I would be glad to get out her computer. She paused for a moment and then said, “First, I would like to pull a few leaves.” I told her that was fine. She could do whatever she wanted. I knew the moment she said she wanted to start by pulling leaves that she would forget the albums. That is exactly what happened. She has been doing something like this periodically. Not once has she actually started on her albums.

These family photo albums are very important to her. She frequently tells me to “remember that for the album.” She says that in response to all manner of things that come up in our conversation. When we are with other people and someone asks her what she has been doing, she often tells them she is working on her albums even though it has been at least two years since she has done anything. Long before that, she was only editing photos, not taking any steps that led directly to assembling the photos for her album.

It is not just this episode that makes me pessimistic about next Christmas. It is many other things that I take to be signs of her decline: Her more compliant nature when I make suggestions, especially about her clothes, her growing dependence on me as reflected in her asking for permission to do so many things, or to help her with her clothes, and more.

We have been very fortunate for such a long time, but I see our quality time together diminishing as she moves into another stage. I will continue to be thankful for the many good times we have had, but I already feel sad about the prospects for the future.