No Victory With the Movie

After lunch, Kate and I went to see The Greatest Showman. It’s a very “artsy” show that I liked, but Kate did not. In some ways that surprises me in that it contains many of the elements that she likes in a Broadway show, lots of singing and dancing. She might have liked it better as a stage production, but I think the music was not as engaging for her and the creative way in which the story is told made it impossible for her to follow. I suspect that there may be as much “truth” in the story as Barnum’s own productions. Fortunately, this is one that Kate did not dislike. She wasn’t bored or bothered by it. She didn’t complain about having seen it. As we walked out, I started to talk about my liking the fact that it made no effort to give the audience the idea that this was in anyway a documentary-like show. This was meant to be entertaining in the same way that Barnum’s shows were. I didn’t say much before Kate said, “Why don’t you wait till tomorrow to tell me about it.” That ended the debriefing as it often does.

When we got home, she remained outside to work in the yard. It is the warmest day we have had in a couple of weeks. I am glad to see her outside again. It really is good therapy for her.

Still Tired

In my recent posts I have noted that Kate has been very tired. That has been especially since our return from Texas this past Monday. After lunch yesterday, Kate came inside and went directly to bed. She slept three hours. When she got up, she was hungry. That led to our having an early dinner. Of course, that meant we were home earlier. I put on a DVD of The Merry Widow. She worked jigsaw puzzles on her iPad while it was on, but she enjoyed the music. By 7:30, she put away the iPad and went to sleep. I went to bed close to 10:00. I discovered that she was awake. I am sure that was a result of her having slept so long during the afternoon. It wasn’t long, however, before she was asleep for the night.

At 7:45 this morning, she came into the kitchen where I was working on the computer. She was ready for Panera. We were there at 8:00. I think there has only been one other time we have gotten there so early. By 9:00, she was ready to go back home. I could tell she was tired. I asked her if she would like to lie down on the sofa in the family room while I read the paper. I told her I would build a fire. She took me up on that offer and rested for more than an hour and a half. She asked if she could go outside. I told her that would be fine. As she does so often, she then asked if she could use her clippers. I told her she could. She gave her customary response. She looked quite surprised and said, “What’s got into you?” I always think this is funny because I have never said anything about her not using the clippers nor have I ever said no when she asks if she can use them. We are having a slight break in the cold weather, and I’m actually glad that she has a little break to go outside. She hasn’t done that much lately.

In another twenty minutes we’ll leave for lunch. At 1:15, we are going to The Greatest Showman. I haven’t had much luck finding movies that Kate enjoys lately. She did enjoy Darkest Hour. This will be very different, but I hope she will like it.

Welcome to Living with Alzheimer’s

Welcome to “Living With Alzheimer’s.” I suspect that you or someone you love has Alzheimer’s or some other form of dementia. If so, I hope you will find words of encouragement and support at this site. You may also find it to be a place where you can learn more about the progression of this disease, but that is not my primary objective. There are many other places where you will find volumes of information about that. What you will find here is, I think, quite different. It is a detailed account of the personal experiences my wife and I have had with this disease.

On January 21, 2011, my wife, Kate, was diagnosed with Alzheimer’s. We were not surprised. We had seen the first signs as early as 5 years before in 2006. The day of her diagnosis I began a journal that represents a chronicle of our lives since that time. It has now grown to more than 1000 pages. It includes the news of her diagnosis, our immediate reactions, how we planned to manage the changes that would affect us individually and as a couple, the frustrations we have had, our relationships with friends, our travel and entertainment, descriptions of the changes that have taken place since the diagnosis as well as how we have coped with the disease.

I never intended the journal to be a place for me to express my personal frustrations although they are included. I have tried as best I am able to convey Kate’s own experiences and how she has felt. Kate’s early decision was not to dwell on her illness. She wanted to focus on living as normally as possible for as long as she could. I respect her decision, but that has meant we have talked very little about her Alzheimer’s or how she is feeling. For that reason, most of the things I have written about her feelings are based strictly on my own observations.

I want to make clear up front that Kate and I have been very fortunate on this journey. Many couples have suffered more frustrations and difficulties than we have. I know because I have been an active reader of books by people with dementia or their caregivers. I also read a lot on the online forums or message boards like those offered by the Alzheimer’s Association or Facebook pages like Memory People and Life with Alzheimer’s. Despite the challenges we have faced, I’d like you to know that it has been possible for us to find happiness while living with Alzheimer’s. We have found the road to encompass highs and lows. I have found personal satisfaction in savoring the highs and try to foster them whenever possible.

The most difficult part for me has been watching Kate gradually lose one ability after another. The remarkable thing is that we are still able to enjoy life together. I know that this will not last forever. Indeed, I would say she is now in the first half of Stage 6 of the commonly used 7-Stage model for the progression of Alzheimer’s. (https://www.alzheimers.net/stages-of-alzheimers-disease/) Time is running out.

From the time of her diagnosis, we made a commitment to make the most of our time together. I believe we have been successful. Several things have made that possible. First, neither of us has had any other health issues that could have made our lives more difficult to manage. Second, the progression of Kate’s illness has been very slow. That has given us more time than I originally thought we might have. Third, Kate has not (yet) experienced some of the most troubling symptoms of Alzheimer’s. I am thinking especially of anger and violent behavior. That would have made our experience dramatically different. Fourth, our personalities fit in a way that has made it easier to deal with many of our frustrations. Fifth, Kate’s diagnosis came when I was approaching retirement; therefore, I have been free of job responsibilities.  That enabled us to spend more time together. Equally important we have not had to deal with the financial pressures that often accompany this disease.

I don’t want you to think that your own experiences will be or should be like ours. I have come to appreciate the fact that we are all unique individuals before living with this disease. There is no reason to think that we are all the same with respect to our experiences afterwards. Whatever your particular circumstances, I hope that you may find at least a few things of interest on this site, and, perhaps, some of them may be helpful.

Thanks for your visit today,

Richard Creighton

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.

A Humorous Moment

Before coming to Panera, I noticed that Kate had put on her pants inside-out. I mentioned it to he rand  then went to get her iPad to take with us. When I returned to the kitchen, she had already gone to the car. After we had been at Panera almost an hour, she got up, and smiled, and said, “I think I should put my pants on the right way.” That was the first time that I had noticed she hadn’t changed at the house. When she hadn’t returned to the table in the time I expected, I got up to look for her. It is not unusual for her to forget where we are and take a seat at another table until I find her. I didn’t see her and turned around to return to our table. When I did, I saw her walking toward me. I said, “I guess you got your pants taken care of.” She chuckled and said, “Why do you think I went to the restroom?” This is one of those light-hearted moments we have frequently even though it could be frustrating to Kate and sad for me. It is one of the ways we both cope.

That reminds me of a phone call I received from a friend yesterday. I have known him in connection with our volunteer service for many years. We first met at Junior Achievement when we served on its board. Later, we worked together at United Way and then the foundation of the UT Medical Center. His wife was an Alzheimer’s patient who died a year ago. He calls once in a while to check on me. This time he let me know that he is going to get married in May.

As we talked, I filled him in on our lives. I said something about Kate’s asking me things (for example, names of family members or close friends) that she would not be as likely to ask other people. It was interesting to hear his response. He knew exactly what I was talking about and the feeling you get when that happens. We both feel that it comes from the trust she feels because of the closeness of our relationship. In that respect, he and I both acknowledged a sense of gratitude and closeness that we feel when these things happen.

For me, it is especially interesting in that Kate still does not talk about her Alzheimer’s in any direct way. She never mentions it anymore, but she is not at all guarded or hesitant to say many things that are obviously symptoms of the disease. I often wonder if she makes any connection between her symptoms and her diagnosis. I really think she doesn’t. I would like to know, but I feel it doesn’t serve any good purpose for me to inquire. She is happy. I want her to stay that way.

A Very Good Day

Kate got up somewhat later yesterday morning, about 8:45. We were at Panera just before 10:00. She worked quietly on her iPad until a little before 11:00 when she was ready to go home. This is a time when she usually would work outside until lunch, but she came inside and lay down in bed. I think she was still a little tired from our trip last weekend. In addition, she had gotten to bed a little later the night before. The weather has improved but is still somewhat cool. That may have also played a part.

I wondered how long she might rest. I didn’t want her to take too long because we had planned a trip to Nashville for a late afternoon visit with Ann and Jeff Davis. Fortunately, she got up at 11:30 and was ready to go. Originally, we had also planned to see Ellen, but her daughter sent me a text the night before saying that she was sick. We hadn’t seen the Davises since before Christmas; so I decided to go ahead.

We both enjoyed visiting with Ann and Jeff. Our relationship goes back to Madison when Jeff and I were both grad students in sociology. Later, we both joined the faculty at UT. Both couples had daughters the same age, and we used to get together very frequently until they moved away. We have continued to enjoy periodic visits with them either in Nashville or Knoxville. During the past few years, I have tried to be more deliberate in arranging visits because it means a lot to Kate and to me. I realize that it won’t be much longer until our visits are much different than in the past. Of course, they aren’t the same now. Yesterday, Kate said very little, but she was comfortable. It appeared that she was getting along well. On the way home, she confirmed that it had been a nice visit. I agreed. It had been another nice day.

Kate’s recent decline in memory has increased my motivation to arrange other visits with the Robinsons and the Greeleys. Both couples live in Nashville as well. As I look to the future, I am unable to predict just how Kate will change and how that will impact our activities. I do remember that my dad took my mom with him wherever he went except his Kiwanis meetings up until her last week or so when she was bed ridden. In his case, they were not traveling out of town. My plan for us is to continue taking it one day at a time. That has worked for us so far. I hope it will serve us well in the months ahead.

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.

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.

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.

Special Moments

For most of the progression of Kate’s Alzheimer’s, she has been less talkative than she used to be. That has meant a significant change in our conversations. We often spend most of our time together in silence whether at home, during meals, or in the car. That has required an adjustment on my part since I am more of a talker. My parents talked constantly. I recall times when they had talked while my dad was getting ready to leave for work. and then again as soon as he reached the shop.

Kate’s and my conversations were never like those of my parents, but I would say they were probably similar to that of most couples. Talking requires too much of Kate. It is not uncommon for her to ask me tell her tomorrow what I was about to say right then. That ends the conversation.

Once in a while, however, she does want to talk. When she does, I welcome and encourage it. The subject matter is usually the same. She talks about her family and us as a couple. That was the case while we were at lunch today. I said something about the pictures I had taken over the weekend in Texas and mentioned her cousin Chester. When I did, she said something that let me know that she didn’t remember his passing away last week and attending his memorial service just two days ago. I often just let things like this pass, but I told her that Chester had died and that we had just returned from Texas. Then she said something about remembering being in Texas.

From that prompt, she said, “I’m really glad you got to know my family.” I told her I was glad too and that it had given me an appreciation for large, close-knit families. She continued the conversation talking about her father. She always speaks fondly of him, but she talks more about her mother. Then she talked about us. She mentioned how well things have always gone for us. I concurred. We both talked about Kate’s father having married a girl from out of state and her doing the same. We talked about the places we had lived and the excitement of each stage of our lives. Naturally, that included having children.

It was a very slow and tender conversation. I wasn’t just listening but participating. It is one of those special times that come along periodically. They always remind me that some of the best times we ever have are those that occur spontaneously and involve simple pleasures like today’s very ordinary lunch. She won’t remember it, but I will.