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An Uplifting Phone Call

Shortly after returning from lunch today, I received a call from Inez Grayson. She is a friend of Kate’s and a former staff member at our church. They became friends when Kate was the church librarian. She had called me a couple of weeks ago to arrange a time when she could take Kate to lunch to celebrate her birthday.

Inez wanted me to know what a good time they had had and how much she enjoyed the lunch. Inez had arrived before I arrived with Kate and had ordered their lunches following my recommendations for Kate. Inez said she was so impressed that Inez had remembered what she likes. She also commented on how much Kate had talked. She found it surprising how many things that Kate had remembered about some of their past experiences. Several people whom Inez didn’t know came to the table to speak to Kate. Inez said she handled herself beautifully. After the friends had left, Inez asked who they were. Kate said, “I don’t know.”

I was so pleased to hear how well the lunch had gone. I’m not surprised. She has always been very fond of Inez, but I always like to hear that she has gotten along well. It is another good illustration of how well she can function in social situations. I hope this continues for a long time.

When Inez first called, she was happy to include me, but I thought it would be much better for just the two of them to have time together. I know that when I am around, I can dominate more than I should. I am so glad I wasn’t there.

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Off to a Late, But Good Start

As she has done several times lately, Kate slept late. She opened her eyes when I walked into our bedroom about 8:30, but she didn’t get up until 10:30. That is after going to bed around 8:45 last night. Until recently, she had been going to bed between 8:00 and 8:30 and getting up around 9:00. It is quite possible that our recent trips to Texas have thrown her off a bit. On the other hand, I always wonder if she might be establishing a new pattern.

This is a light day for us. The only commitment we have is to get haircuts at 3:00 this afternoon. Because we have plenty of unscheduled time, I decided to drop by Panera for Kate’s muffin even though it was 11:30. I thought it would be good for her to be occupied for an hour here before we go elsewhere for lunch. It’s a sunny day though a bit chilly. I suspect she may want to work in the yard a little between lunch and our haircuts. That will leave us with another hour and a half or so before having dinner. I find that the day seems to go well when Kate’s activity is divided into small “chunks” of no more than two hours.

She is in a good mood today and is happily working her jigsaw puzzles on her iPad. She hasn’t asked me to help her once, and we’ve been here about fifty minutes. That is a rare event. I am optimistic we will have another good day.

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More Rehearsing of Names

Not long after we sat down for lunch yesterday, Kate said, “Tell me my father’s name.” I gave her his full name. The she asked for her mother’s name. Once again, I gave her the full name. Unlike the other day, I believe she really knew the answers and also believed I knew them. I think she was just leading into a way to talk about the names of people and places she is beginning to forget. I asked her to tell me our daughter’s name. She got it as well as her husband’s name. She stumbled on her boys’ names, but when I said Ron, she immediately said Randy. We did the same with our son’s family. When I told her that Kevin and Rachel have three children, she looked surprised and said, “Three?” I gave her the names of all three.

Following the family part of the name game, she asked, “Where are we right now?” I told her we were at Carla’s. It turned out she wanted to know what city we were in. I said, “We’re in the city where our home is located.”  She said, “Where is that?” I told her and didn’t go any further. Even though I know her memory is fading, I find myself surprised when I come face to face with examples like this. I wish it weren’t so.

Later in the afternoon, we spent some time at Barnes & Noble. Before leaving, she wanted to use the restroom. It is located about 60-70 feet and to the right of where we were sitting. She asked me to tell her where it is. I suggested that I take her. At first, she didn’t want me to. Then she quickly changed her mind. She went ahead of me and I took a seat on a bench directly across from the women’s room 15 feet away. I saw her walking back toward me. She said she couldn’t find it. I showed her the door a few feet behind her. She had walked by it twice without seeing it. These things confirm what I already know, that I need to stay close to her even in places like this where we are a closed space. It would be even worse in a mall or the Atlanta Airport where I lost her for 35 minutes on our recent trip to Texas.

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When Kate is happy, I am happy.

Periodically, I like to reflect on how I feel about Kate, our relationship, and the way things are going. The fact that it has been seven years since her diagnosis prompts me to do that now. The medical community uses a one to ten scale for patients to indicate their pain level. If I were to apply this scale to my feelings about the way things are going, I would probably say an 8. Kate and I are both in good moods right now. Both her mood and her state with respect to her Alzheimer’s influence my mood significantly. She has been in a particularly good mood for some time now. If that were the only factor in my mood, I would have said a 10. The fact that I notice more and more symptoms of her decline brings the rating down a couple of points.

During the past seven years, Kate has experienced more irritability than before. That was concentrated over a fairly lengthy period of time. The good thing is that it was neither intense nor constant. It was mild and relatively infrequent. I am never sure how much her behavior is influenced by mine, but I have made some changes over the couple of years or so that could have played a role in her showing less irritability.

In the past, we have often engaged in humorous banter that originally worked to lessen the seriousness of emerging problems. Kate has always recognized my OCD tendencies. As a result of my gradually taking charge of so many aspects of her life, she would tease me about how “anal” I am. I always responded light-heartedly in a way that encouraged her expressions of concern about my desire to keep her clothes clean, to see that she wore her yard clothes when she worked outside, to suggest that she change when I saw that what she was wearing was inappropriate for an event we were attending, and lots of other things .

I think this served us well for quite a while. Over time, however, her teasing seemed to display a more serious tone. I decided not to encourage this kind of banter any longer. I also made some important behavioral changes. I eased up significantly on what she wears. For the most part, I let her wear whatever she wants when she is working outside. I have also tried to be clever when she is about to wear something outside that really concerns me. For example, I bought her a new winter coat for everyday wear. When she was about to wear it to do her yard work, I told her I had something that would be even better for her. I told her it was a good warm coat. She accepted that. I bought a couple of pairs of new shoes and keep them in my closet. I bring them out for her whenever I think she should wear something a little nicer than the ones she wears every day. In the evening or the morning before she is up, I locate them and put them back in my closet. I do the same with her pants.

One other change is that I increased our conversation about our relationship. I encouraged talking about how long we have been married and emphasized all of the good things we have experienced over that time. None of this was something we had not done before. The difference was talking about it more with a deliberate attempt to facilitate good feelings about our relationship. For example, on occasions when she needs help getting her clothes on, she usually thanks me. Instead of casually saying, “You’re welcome. Glad to help,” I might look at her and very deliberately say, “I’m glad to do it. You know we’re really a team.” I’ve emphasized the fact that we are doing these things together. She has responded well to the idea of our being partners in everything. I, of course, see this as being partners in her Alzheimer’s. I don’t believe she thinks of that at all. I believe she looks at it as simply the kind of partnership that makes for a good marriage. She’s right, of course, but I also see a special connection to her diagnosis that she no longer sees.

I am not saying that my changes have made the difference in her happiness. That may only be a part. Kate has declined during this time period and become more dependent. Thus she is more accepting of my help in just about every area of her life. I do believe, however, that these changes have meant fewer bases for conflict, especially over clothes. It has also fostered more happy moments. We both like that.

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A Funny Thing

It’s no surprise that at this time of day we are at Panera. A few minutes ago, Kate went to the restroom which is just around the corner from where I am seated. The next thing I knew she tapped me on my shoulder and said, “I found you.” I said, “Did you walk around to the front?” She said, “No, I just turned right and walked right to you.” I gave her a “two thumbs up” response.  She laughed and said, “But will I be able to find you next time?”

She took her seat at our table and stated to work on a puzzle. Pretty soon she ran into a problem and handed the iPad to me. She said, “You’ll probably fix it just like that.” She had three puzzle pieces that were out of place. I put them in the proper spots. She said, “You’re so smart. I would never have figured it out.” I told her the problem was her eyesight and that it can be difficult to see if the pieces are not exactly in their places. (This is one of the puzzles that doesn’t have a snap feature that draws the pieces in place when you are close.) She acted like she was irritated because I had fixed it so quickly. In a minute, she looked up at me, and blew me a kiss.

I think this provides a glimpse of how most of our interaction goes and why I say that our personalities fit well together to minimize significant problems.

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Growing Dependence

I continue to see different ways in which Kate expresses her growing dependence on me. It is expressed in lots of little things. Most of these are not brand new. It’s the number of different things that occur and the way in which she expresses them. For example, after the sitter left this afternoon, I asked if she had gotten along all right. She said yes. Then I said, “You know I always worry about you.” She said, “I know you do. Because you don’t want anything to happen to me. You’re a good husband.” I said, “I’ll always be there for you.” That kind of exchange is very common for us now.

At dinner, she asked me the name of the owner of Chalupas. I told her. Then I mentioned his wife and the children who also occasionally work there. She stopped me and let me know that I was telling her more than she could take in. I believe her honesty represents a sign of trust that I will respond with understanding to her own expression of vulnerability. She depends on me to know when to stop, and I do immediately. I not only stop, but I often apologize for going so far beyond what she had asked. I know that she can’t process much information and try not to overwhelm her, but I frequently go too far in answering her questions.

As we drove into the garage after dinner, she whispered and asked, “Are we staying here tonight?” She had asked the same question last night and always whispers when she asks. I suspect she thinks there might be somebody else who might hear her. Before getting out of the car, she asked (with hand signals as she often does) if she should take her cup into the house. As I have reported a number of times before, she often asks if she can work in the yard, if she can use her clippers, and where in the yard she should work. I have never told her that she can’t work in the yard. I assume asking for permission is just an extension of my handling so many other aspects of her life.

By themselves, none of these incidents is dramatic, but they, along with many other similar ones, suggest an increasingly greater acceptance of her dependence. As I think of it, one area where she had held on to her independence involves the clothes she wears. That is another area where she has really displayed more dependence. Coupled with my increased acceptance of what she wears, we are having fewer problems with clothes than in the past.

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Working Hard to Remember

It would be easy to imagine that a person who is as far along in her journey as Kate would simply let go and drift away into her own world. That is what I imagined my mother did. What I realize now is that a spouse or other caregiver who lives with the person with dementia sees far more than anyone outside the home. As it has become more difficult (impossible) for Kate to remember things, she seems to work harder than she did earlier. If not, harder, she is more open with me about her efforts to recall the names of people and places.

It is common for her to rehearse names of family and friends before each visit. A typical situation would involve my telling her about our upcoming visit during lunch or dinner. She will ask me to tell her the names of the people we will see. That usually means one or two names, sometimes as many as four or five when we are visiting our childrens’ families. The pattern is always the same. She asks for a name. I tell her. She repeats it. Then she asks for the name again. This sequence repeats itself several times. Then we move on until we are in the car or plane to see someone. Sometimes she is able recall the first name but can’t get the last.

There are other times that she is trying to recall names when the two of us are not “in rehearsal.” For example, as we are driving someplace, she will just speak someone’s name. I may be reading too much into these occasions, but it sounds like she is pleased with herself when this happens.

There are also times when I initiate the conversation with, “Here’s a test for you. What is the name of your only granddaughter?” Yesterday on the way to lunch, she surprised me by saying, “I’m going to test you. What is my mother’s first name?” When I told her, she said, “Right” and asked, “What is her middle name?” Then she asked me to tell her her father’s name. I can’t know for sure, but I believe she was not asking to test me at all. Indirectly, she was asking me to remind her of her parents’ names. In a sense, this is a way of covering for not being able to remember. On the other hand, it is also possible that she might really have been playing a game with me. If that is so, I would have another interpretation. I would think she has passed into another stage at which she is not able to grasp my own capability to remember. While that may be, I haven’t noticed any other signs that would suggest this is so.

Last night at dinner, my dad’s former writing teacher was sitting in the booth behind us. She was with another woman who had been in the writing class. The third woman had been in his Sunday school class. We chatted a few minutes with them before taking our seats. Immediately, she whispered, “Who is she?” I knew she meant the writing teacher. I told her. We went through this several times. Then she did the same thing with the restaurant. She never got them, but she was trying so hard.

This experience also makes me think about her decision not to tell others, even our children, about her diagnosis. She has never wanted to be treated like someone with Alzheimer’s. She wanted, and still wants, to be treated just like anyone else. It’s just so hard when you can’t remember who people are or even where you are.

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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.

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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.

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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