Our Anniversary Celebration

One of the things I’ve learned about “Living with Alzheimer’s” is that people’s experiences can be quite different; however, there is at least one thing that all or most dementia caregivers experience: unpredictability. One minute Kate is smiling cheerfully. The next she is withdrawn.

Because of that, I am never sure how she will react to a situation in which I would love for her to smile or just hear her say a word or two. With that in mind, I prepared something special for our 60th anniversary last week. I decided to take her out to dinner at one of our favorite restaurants, Casa Bella. We hadn’t been there since November 2020. In fact, we hadn’t been out anywhere in more than two and a half years. Kate was beginning to lose her mobility before that, and she was in bed for so long with Covid that she completely lost it. Since then we have only been able to move her with a lift to get her in and out of her bed and into her wheelchair. Thus, going out to eat requires a vehicle that is wheelchair accessible.

Getting transportation was easy. I simply called the agency that provides in-home care for our retirement community, but I had other concerns as well. I didn’t want to put her in a crowded restaurant, so I made reservations for Tuesday night after Memorial Day when I thought it was less likely to be busy than later in the week. I called the owner of the restaurant and made reservations for 5:00 pm. That’s when they open for dinner. At the same time, I arranged a table in the room where we had often eaten in the past. I also asked our caregiver to stay an hour or two later than usual.

The only remaining concern I had was Kate’s mood. I wanted the experience to be as joyful as it had been on our previous visits there, but I knew there was no way to predict how she would feel or react. Nor was there any way I could ensure that she was in a cheerful mood. As it turned out, everything worked out beautifully.

The day began on a positive note. Kate slept late that morning. She was still asleep when the caregiver arrived at 11:00. I was happy about that because she is sometimes worn out later in the day after waking early.

When I arrived home from lunch, she was resting in her recliner as usual. She smiled when I approached her. I spoke to her for a few minutes letting her know how happy I was to see her. I turned on some “Sing-Along-for-Seniors” music on YouTube. She responded well to that. I sang, but she didn’t. Nonetheless, her smiles and facial expressions showed that she was enjoying herself.

We also had a good experience when we went out for ice cream. She smiled much of that time and responded a little to those who spoke to her – at least more than she usually does. Then we came back to the apartment where we met the driver who would take us to dinner.

We arrived as they opened right at 5:00 pm. The owners were not there, but they had prepared the staff for our arrival. They greeted us warmly and got us settled at our table. Kate and I as well as our caregiver (who had never been there before) enjoyed every minute.

Not long after we were seated, the owner arrived and came directly to our table. We had a nice visit with her. Although I can’t remember what she said, I was pleased that Kate responded audibly to something she said. A little later, her husband also dropped by to say hello. We had a good dinner, but the real enjoyment was being back in a place where we had eaten many meals over a period of fifty years. The bonus was that Kate enjoyed herself the entire time. That made for a very special sixtieth anniversary. I could not have predicted that the day would go so well. I’m already thinking about the possibility of doing this again.

Reflections on Living with Alzheimer’s: Part 2

In my previous post, I talked about our pre-diagnosis experiences and my belief that they have helped us deal with our post-diagnosis experiences with Alzheimer’s. Many other things we have done since the diagnosis have also been valuable.

One is the way we responded at the beginning and continued throughout our journey. We both accepted the diagnosis. We were helpless to change that. Instead, we directed our attention to “What next?” Planning was a critical first step. We talked a lot during the first few weeks. We didn’t arrive at a detailed plan, but we set a goal that has guided us from the beginning to the present time: to enjoy life and each other as long as we were able. We began binging on the activities we had most enjoyed throughout our courtship and marriage.

That included going to more movies and theatrical productions. We took advantage of our local theaters as well as those in three other cities that were within a 2-hour drive from our home. We attended many musical events locally and out of town. We also traveled domestically and internationally.

We made a change in our dining habits. At first, I tried my hand at fixing simple meals and bringing in meals from some of our favorite restaurants. I quickly discovered that I didn’t like fixing meals or cleaning up afterward, so we started eating out for lunch and dinner. That continued until the beginning of the pandemic in March 2020.  We had eaten out more than 6000 times since her diagnosis. In addition to eating out for our daily meals, we went to a local Panera Bread each morning where Kate got a muffin. After lunch, we went home for a break where she rested. Later in the afternoon, we went to the café at Barnes & Noble where we spent an hour or so before going to dinner.

We did all this for convenience and pleasure, but the most important benefit was totally unanticipated. We were never socially isolated. We often ran into friends and acquaintances. We also became better acquainted with the servers and managers of the various establishments as well as other regular customers. Doing all of these things meant we led very active lives. We were living well, and we were achieving our goal of enjoying life and each other.

It wasn’t until 2018 (7 years after Kate’s diagnosis) that I understood why we had gotten along so well. That’s when I read Dementia Handbook by Judy Cornish. She introduced me to the significance of rational and intuitive thought and its relevance for people living with dementia.

Rational thought deals with the kinds of things we learn from our parents, teachers, and many others we encounter. These include the rules of behavior as well as factual knowledge like language, history, math, spelling, names of people, places, things, etc. Intuitive thought involves experiential learning that occurs directly through our senses – touch, taste, smell, sight, and hearing. We put so much emphasis on rational thought that it’s easy to overlook the significance of what we learn experientially. That is probably why so many people believe that all is lost with dementia. That’s a big mistake. As Cornish points out, intuitive thought provides us the ability to enjoy the world around us like music, art, and the company of other people.

When I learned this, I immediately recognized that Kate and I had done just what Cornish suggests. When we focused our attention on enjoying life that led us directly to the things that Kate could appreciate even as her rational thought declined. Music, theater, dining out, travel, as well as time with family and friends were all things she could enjoy.

That is not to say that we could continue all of these things while “Living with Alzheimer’s.” For example, she reached the point at which she could not follow the plot of movies. Interestingly, the last two movies that she really enjoyed were Won’t You Be My Neighbor which was about Mr. Rogers,and RBG, a documentary about Ruth Bader Ginsburg. Both films were filled with humor and touching emotional moments that she could appreciate.

All of these things have enabled us to live joyfully with Alzheimer’s. Best of all, we continue to do so at this late stage of the disease. I firmly believe the improvement Kate has experienced over the past year relates to the attention she receives from the residents and staff of our retirement community. Of course, our primary caregiver and I make sure she gets the same attention at home. This attention is something else that she can enjoy via her intuitive thought/ability.

You might ask, “How long will this last?” I ask myself the same question. The answer is I have no idea. One thing I do know. We will continue to enjoy life and each other as long as we are able.

A Restaurant Experience The Other Night

Although Kate sometimes speaks harshly to me, it is far from an everyday occurrence. She has remained gentle and kind-hearted. Not only that, but she has rarely said anything in public that someone else might take as rude or inappropriate though on a couple of occasions, she has said something to me that surprised the people we were with. Recently, she spoke harshly to the woman who was shampooing her hair. This wasn’t anything serious. She was just frightened by the splashing water. I don’t think the hair dresser thought a thing about it.

A few nights ago at a restaurant, we had a different kind of experience. We had had a nice day. She had been in a good humor, and we had enjoyed our time together at lunch and at home where we toured the house, looked at some of her photo books, and listened to music. She had been resting when I told her I thought it was time for us to go to dinner. She got up easily and wanted to go to the bathroom. As we were about to leave, she looked like she was troubled though she was quiet in the car.

She was very uneasy walking from the car to the restaurant. This is something that is becoming common. Her vision fools her into thinking the pavement is much more uneven than it is, and she is quite afraid of falling. Once we got to the table nothing seemed right to her. She thought it was taking a long time to get our drinks and place our order though it hadn’t.

She was confused and not especially interested in anything she was served. I tried to find something she would like but wasn’t successful. Our server was someone who has served us a long time, but Kate responded as though she had never met her. She wasn’t rude, but she didn’t express any special pleasure in seeing her. That was a surprise. At one point, she was bothered by something in her teeth. The server asked her about it, and she opened her mouth to show her much the way a small child would do. The server asked me if they were her real teeth. Before I could answer, Kate said she had one tooth that wasn’t hers. I was stunned. It was one she got long before I knew her. We’ve replaced it one time, but that was probably twenty or more years ago. I haven’t heard her say anything about since that time, and I had almost forgotten. How in the world she remembered I’ll never know.

I wish I could remember all of the things that happened. I know it was very clear to the server that she was not the same Kate she had seen before..

Her mood didn’t change as we walked to the car. When I opened the car door for her, I started to take off her mask as I usually do. She was angry and snapped at me. I was surprised. She is always eager to take it off and often does so herself before we get to the car. I apologized. After getting in the car she was fine. She did, however, wear the mask all the way home and didn’t take it off until we were in the house. What brought on the episode at the restaurant and why she changed so quickly once in the car remains a mystery.

I haven’t observed anything like it since then although I have noticed an increase in her uneasiness walking to and from the car. That is especially true when going to a restaurant or to her hair dressers. I am sure the same would be true for other places if we were going other places. I think this is largely a result of her poor eyesight. On the other hand, I notice she is more distirbed or frightened by things she hadn’t expected. Noise is one of those. She seems to feel less and less comfortable in a world that seems stranger and stranger to her.

Not Everything Has Changed for Us

NOTE: The following post was uploaded shortly before all restaurants in our area were closed. We will be eating at home with takeout from a few restaurants and meals prepared at home for the others.

As I write this post, the world is trying to adapt to significant changes related to the Coronavirus. WHO has declared a pandemic. Colleges and universities are extending spring break or cancelling classes for the balance of the semester. The NBA suspended its season. March Madness is off. Disneyland and Disney World are closed. And millions of people in the US and around the globe are making their own personal adjustments to the threat of Covid-19.

Kate and I are making our own changes. That is not new for us. We’ve been doing that for the past nine years since Alzheimer’s entered our lives. The fact that we eat out for both lunch and dinner every day is of special concern, however, and I am looking at that very carefully.

Getting food is not the problem. It’s the fact that we eat out for all our lunches and dinners. Of course, I can prepare meals at home or have them delivered, but that requires a life change that has been critical in our minimizing the impact of Alzheimer’s. It has helped to keep us from feeling socially isolated. It’s a change I don’t want to make, but we have made many changes already and have adapted well. I believe we will do the same this time.

That prompted me to think about some of the previous changes we’ve made. Kate gave up her position as our church librarian even before the diagnosis. She knew she wasn’t handling the job (even as a volunteer) the way she felt she should. I began a phased-in retirement to take care of her. Kate replaced her responsibilities with the library by working in the yard and working on a family photo book on her computer. Early on, I became the sole driver when Kate had an accident that totaled her car. I took over management of the household. I cut back on my volunteer activities at church and in the community. We discontinued international travel. We stopped making our annual trips to Chautauqua. We gave up all evening events except our music nights at Casa Bella that begin at 6:00 and end between 8:15 and 8:30. Kate had pruned the shrubbery so severely that many died and others didn’t have anything left to prune. She lost the ability to use the computer. That left her with the iPad that she has used so much until recently. Now she is having great difficulty working her jigsaw puzzles. We stopped making trips to see our children and grandchildren. Movies used to be an important source of entertainment. We saw only two last year, and Kate only enjoyed one of them.

Eating out has helped us maintain our quality of life. I am not yet planning to stop, but I do want to be prudent. Friday afternoon I made an unusual trip to the grocery story. Typically, I go once a week to buy eggs, V8, and bananas for my breakfast as well as a few other incidentals. Friday’s trip was for some frozen items as well as assorted foods that I can prepare at home. I didn’t buy a lot. I just wanted to make sure we have enough food for several days. During that time, I will reassess the situation and make further plans. I believe the probability of receiving or passing the virus is greater at some restaurants than others. We ate lunch at Applebee’s on Friday. No one was there when we arrived. Only three tables were occupied when we left. Bluefish Grill has very few customers for Saturday lunch, and they are spread out. That was true this past Saturday. Our Sunday lunch place seats almost 200. I counted thirty while we were there yesterday. Unfortunately, our regular music nights at Casa Bella appear to be the biggest threat. The crowd numbers about sixty in close proximity. The same is true for our regular pizza place.

We ate at home the past two nights. Saturday, I cooked boneless, skinless chicken thighs in a tomato sauce with Italian seasoning. Kate is not a vegetable eater, so I served fresh fruit salad with blueberries, bananas and apples. Last night, I added bouillon to the leftover thighs and sauce and made a soup. We had a very pleasant time both nights. In a way, sitting down at our own table was almost like a treat.

Looking ahead, I see a downside that I will have to address. Cooking adds a new element of stress. I have only so much time for all my activities, most of which involve caring for Kate. I skipped the Y on Friday to grocery shop. The preparation of a meal as well as the clean-up afterwards takes time I could do other things. This is a little thing, but I am reminded of why I was initially motivated me to eat out in the first place. It was only later that I came to realize its social benefits. I believe one reason I have been able to manage stress as well as I have is that I have worked to minimize the things I have to do on a daily basis. Cooking our meals is not something to which I look forward. I am going to assume this will be temporary, and plan for to eat out less. We have adapted before. We will continue to do what we need to.

As I think about all our changes, I have to say that one very important thing hasn’t changed – our relationship. What I mean is the feelings that Kate and I have for each other have remained strong. I would say even stronger than before Alzheimer’s. Each of us places more value on the other and recognizes it.

Kate may not always remember my name or that I am her husband, but she continues to feel comfortable with me. She is especially insecure now and looks to me for help with everything. Interestingly, she has called me by name more often in the past few weeks or months than she has for a year or two. I think that is a case of “reflexive memory.” She calls my name most when she needs something, and that occurs more frequently now. The name just pops out. At other times she asks my name. It often happens while riding in the car, eating a meal, or when she wakes up in the morning. In moments like those, my name and relationship have slipped away. I imagine she is thinking, “I know this guy, but who in the world is he?”

She continues to be very appreciative. Two nights ago, as she was getting in bed, she thanked me for taking care of her. For a moment she was emotional and started to cry. She said, “You have such a load on you.”

She also likes to be with me. We share many tender moments in which we express our love for each other even when it doesn’t involve words at all. Sometimes we just sit side-by-side with my arm around her listening to music. Other times, we just hold hands. We don’t always need to express our love in words. I didn’t imagine it would be like this at the time of her diagnosis. That’s just one more reason I say we are fortunate. I am grateful.

Yesterday’s Happy Moment: An Example of Kindness

I don’t recall exactly when Kate and I began eating out for lunch and dinner. It was at least eight years ago, perhaps longer. In January, it will be nine years since her diagnosis. I was still working then, but I started taking Kate to lunch almost every day. For our evening meals I prepared a meal at home or brought in something from a nearby restaurant.

I soon tired of fixing dinner and cleaning up afterwards. The meals themselves didn’t seem special. That’s when I decided to eat out for all our lunches and dinners. I was motivated by convenience and a desire to concentrate on having a good time with Kate. As I learned long ago, change brings about unintended consequences. Yes, I did find it easier to eat out than to prepare or bring something in, but that turns out to be a smaller part of the story. What I discovered is that eating out became not only a time for Kate and me; it became a moment of social engagement that has been a lifeline from the very beginning.

As a result of our going to the same restaurants on a weekly basis, we have come to know the servers, hostesses, and other personnel. Just as important, they have come to know us. From the beginning, I informed them of Kate’s Alzheimer’s. This was long before I had my printed Alzheimer’s cards. I wanted them to be aware so that they would understand if they ever noticed something that might seem a bit strange.

Much is written about caregivers and their need for support. Earlier this week, I saw a Tweet that indicated that 74% of caregivers never ask for help. I understand that; I’m not prone to ask for help myself.

I’ve also read about the importance of a caregiver’s “building a team of support.” That caused me to reflect on our own situation. I had never thought about doing that for Kate and me, but that is exactly what has developed because of eating out. Yes, it consists of many short-term interactions and is not like the long-standing relationship of close friends. However, it provides a good bit of support and not just to me as a caregiver, but to Kate as well. We experienced a good example of that yesterday at lunch.

A month ago, the young woman who had served us the past three years for our Saturday lunch left her job for another one. We continue to go to the same restaurant and are getting good service, but I have missed the one with whom we had gotten so well-acquainted. Last week, I sent her a text and invited her to be out guest at one of our other restaurant. I didn’t know when I asked her, but it turned out to be her birthday.

We had a nice conversation under more leisurely conditions than when she was serving us. She has always given a lot of attention to Kate and did so again yesterday. I was careful to seat Kate directly across from her to make that easier than if I had been seated there. I’ve done this on several other occasions and sense that it makes a difference.

I made reservations and requested a server that has taken care of us frequently. When I introduced her to our guest, I mentioned that she had been our server at another restaurant. That opened the door to a little conversation between the two of them. The obviously shared a number of things in common.

The big surprise came after we had finished our meal. I told our server I knew we wanted a dessert since it was our guest’s birthday. I expected that she would bring the dessert menu. Instead, she came back with two desserts, a crème brûlée cheesecake with a candle and a large chocolate cake with raspberry filling between the layers. She said she had bought the cake especially for Kate who was touched and broke into tears of joy. Then the server left and brought a beautiful potted plant for her. Nothing could have been better. We have added that to Kate’s other flowering plants in our family room and on the patio where she can enjoy it every day.

It was a beautiful way to end our meal. It was also a reminder of how kind people can be. Incidentally, this was the same restaurant where some anonymous person paid for our meals two weeks ago and where that same server had brought her mother in to meet us. None of the restaurant personnel think of themselves as playing a role as members of our “support team,” but they are and have been. It really makes a difference in our lives and is just one other example of how fortunate we have been.

 

An Update on Eating Out

As I have expressed in other posts, a variety of things have played a role in how well Kate and I have gotten along through six of the seven stages of Alzheimer’s. I believe that nothing has been more important than our eating out for lunch and dinner. That has kept us socially active without having to depend on our friends. Of course, some of our eating occasions are with friends, but we almost always dine alone. There are notable exceptions like our three music nights a month at Casa Bella when we sit with two to six others. In addition, we met a couple at these music nights with whom we eat on other occasions at least once a month.

Now that she is in the last stage of Alzheimer’s I see more signs that her symptoms could ultimately be a bit of a problem with other people. For quite a long time, she has been a “messy” eater. She is even messier now. She regularly drops food on the table, the floor around her, and, of course, her clothes. When her meal includes items that she doesn’t like, she often takes them out of her mouth and puts them on the table. If we are sitting close enough, I reach over and put them on my plate, in a paper napkin, or another appropriate place.

I have gotten rather accustomed to her frequent use of her hands rather than a fork which is especially common when she eats a sandwich. She almost always takes it apart and picks up the various pieces (cheese, tomato, or meat) with her hand. Depending on the amount of sauce or other condiments, that can be messy.

At lunch on Saturday, she did something she hasn’t done before. Our server brought us a piece of cheesecake. After she placed it on the table, I asked her a question. She started to answer when I noticed that she was looking at Kate. I looked at her and saw that she had picked up the whole piece, taken a bite out of it, and placed it back on the plate. This was not a problem for either the server or me although the server was surprised. She is aware of Kate’s diagnosis and is very understanding; however, it is only recently that she has had the opportunity to witness some of her symptoms. Things like this do make me think about what might lie ahead.

There are also times when I say or do something that bothers Kate, and she snaps back at me. The other day at a restaurant she placed her sweater over the back of her chair. It apparently didn’t feel right when she leaned against it. I asked if she would like me to put it on the back of an empty chair beside us. She looked like she didn’t quite understand me, and I reached over and took the sweater from her chair. I don’t remember what she said, but she quickly gave me a sharp response as the server approached our table. I apologized to Kate and put the sweater back. It turned out that she was then embarrassed to have spoken to me like that. She had tears in her eyes and said to the server, “I’m sorry. I shouldn’t have said that. I want you to know that I am not usually like that.” That is very true, and I suspect the server recognized that as well. She has served us many times in the past few years and never observed anything like that before.

I believe that all our servers and the people with whom we eat are also understanding, but I wonder if there is a limit to which I should go in putting Kate in situations where some might not feel the same way. For the moment, I am optimistic that we will be able to continue eating with others for quite a while; however, I am going to be watching very carefully to sense what is best in the future.

Last night at Casa Bella we encountered an entirely different kind of situation that was a lesson learned for me. Two months ago, we learned they were sponsoring a special Italian dinner that occurred last night. It sounded like the kind of event we would enjoy, but I was concerned about two things. First, all seating was to be outside in the street in front of the restaurant. Kate is very sensitive to heat, and September can still bring hot weather. Second, I wasn’t sure about the seating. Big crowds are confusing for Kate, and I didn’t want to be seated with a group of strangers that might add to her confusion. On the other hand, I wanted to support the owners whom we have come to know the past few years. I talked with them and learned that we would be seated with the same people with whom we normally sit. I decided to take a chance and attend.

As it turned out, I wish I hadn’t. It was 90 degrees when we arrived and didn’t drop a lot during the meal though it felt better after the sun went down. The gnats were there in abundance as well. The benefit of being seated with our regular couples was offset by the noise level. The tables were under a large tent to protect from the weather, but I think that contributed to the noise. It was very difficult to converse. Everyone was asking everyone else to repeat what the other person said. Kate remained quiet except to make noises associated with gnats that periodically flew in her eyes.

Given all of this, Kate took it quite well, but I could see I had made a mistake in deciding to come. I was glad we hadn’t shown up for the cocktail hour that preceded the dinner. We were the first ones to leave shortly after finishing our meal. I have been very careful to avoid situations like this in the past. I should have done that this time.

Music and Rest

Even though I believe so strongly in the power of music, I am still occasionally surprised by experiences with Kate. Day before yesterday, she did two things that I didn’t expect. The first occurred as we were about get into our car after lunch. I told Kate I loved her. I have no idea why, but I immediately thought of that old song “I Love You a Bushel and a Peck.” I can’t remember the last time I heard it. It certainly isn’t a song one hears very often.

When I got in the car, I googled it and pulled up a rendition by Doris Day. After she had sung the line “I love you a bushel and a peck,” Kate sang the following line in sync with the music – “A bushel and a peck and a hug around the neck.” Of all the names of people, places, and things that have been lost in her memory, how did this one pop into her mind, and so quickly? I thought for a moment. Then I asked myself if this was any more puzzling than my remembering the song itself when I said, “I love you.” I’ve said that thousands of times without making that connection. Why did I make it this time? We have so much to learn about the brain.

The other incident occurred the same day. We were in the car, and “If Ever I Would Leave You” was playing. It wasn’t long before she said, “I would never leave you.” I took note of her remark because of her emotional experience with another song that was sung at Casa Bella last week. I had wondered to what extent she was able to make a connection between the words of a song and our own relationship. My guess was that she was moved by the music and lyrics but probably didn’t make a connection to us. I still think that. On the other hand, this week’s experience let’s me know that she is able to process more of what is said than I usually believe or report in this blog.

I have, however, noted that she often gives evidence of rather keen insights concerning what is going on around her and between the two of us. I take these experiences as examples of her intuitive abilities, and they continue to work amazingly well. One of those occurred last night as we left Casa Bella. She thanked me for trying to keep her from “making an idiot of myself.” While I always assure her that she gets along fine, she recognizes the many problems she has. Without a memory, she can’t remember all the things each of us does when we are eating out and feels insecure. Sometimes, as she did last night, she worries about how to order her meal. She kept picking up the menu and asking for my help. Each time I told her what I selected and would order for both of us. She was relieved, but she couldn’t remember. She asked for help another 6-7 times before the server took our order. There were a number of other things for which she needed help. It’s hard to imagine the pressure she must feel in situations like this.

Perhaps it is this kind of pressure she experiences throughout the day that is now causing her to rest more. She is making a habit out of resting immediately after we get home from lunch. That happens even on the days she has slept as late as 11:00. The length of time she rests is also increasing. After lunch, she sometimes rests until time for us to leave for dinner. In addition, two nights this week she has gone to bed shortly after 7:30.

The good news is that she continues to be happy even in situations like last night. I believe it is good for her to get out despite the challenges. I am hopeful about continuing a while longer.

At Stage 7 of Alzheimer’s, is there really any joy for caregivers and the ones for whom they care?

My memory of the last stage of my mother’s dementia has faded significantly. One thing I remember is that, except for his Kiwanis meetings, my dad still took her with him whenever he went out. That was the only time he sought help. He dropped her off at a senior day care for four hours to attend his meeting and shop for groceries.

I look back with amazement as I think of those days. At the time, I wondered why he did it. He was eighty-eight, and she was completely dependent on a wheelchair the last two or three years. In order to get her from their apartment (that fortunately was on the ground level) to the car, he had to roll the wheelchair 25-30 feet over grass. Then he got her into the front seat of the car, folded the wheelchair, and loaded it in the trunk of his car. From my personal experience, this was not a simple task. Yet I never heard him utter the first word of complaint. They had been married 70 years when she died. He was just expressing his love for her in the only way he knew how at that point, and he did it joyfully.

Now that Kate is closer to that stage of her Alzheimer’s, I have a greater sense of what sustained him. He could see what I didn’t. There is no doubt to me now that he could find joy in their relationship when it appeared to me that the joy had long since passed.

I believe Kate and I have some time left before she is at that same point, but I can already see that joy is indeed possible very late in this disease. I am sure that doesn’t happen for everyone. As I have said before, we are very fortunate. My point is that it can happen and should be something for which those of us living with Alzheimer’s can hope.

Moments of joy may not come as often as they did before. They may be short-lived.  They do occur for us, however. We had another of those “Happy/Joyful Moments” at lunch yesterday. As I reported in my previous post, she didn’t know my name or our relationship when she got up to go to the bathroom in the morning. I’m not sure whether she did or didn’t later when I got her up for lunch. There were times during lunch when I know she didn’t. Neither did she remember her own name. As earlier that morning, she was quite at ease with me. When she asked my name and relationship, she accepted it as naturally as she did when she pointed to her salad and asked, “What is that?”

She was very talkative. Interestingly, we didn’t gravitate to our usual conversations about family and marriage. She asked questions about the restaurant, the food, and the staff. It was unusually quiet when we arrived. Only one other table was occupied. She said, “I wonder if <using her hand because she couldn’t think of the word for servers> like it better when it is quiet like this or when it is ‘you know’ <again using her hand and groping for the word ‘busy.’>

It is always fascinating when she doesn’t “know” me but also talks about my personality quirks. She kidded me a lot during lunch, and none of the kidding had a bitter edge to it. She was having fun, and I loved it.

Because it was less busy, we got more attention from the staff. We had several conversations with our server. Another person who often serves us stopped by our table to speak. The manager also stopped by for a brief visit. During our conversation with the manager, I commented on how much I had liked the broccolini salad with a little tomato and feta cheese. Kate didn’t like it because she doesn’t like the crispiness of raw vegetables. As the manager was about to walk away, Kate said, “And don’t give me any of that anymore.” She didn’t sound offensive. It was more like a little child simply expressing her distaste for the salad, something I had already explained to the manager.

She also said or did a couple of other things that I got a kick out of. She now frequently mixes her words and sometimes says something that is just the opposite of what she meant or is a homonym for the word she wanted. For the first time, she did this with a gesture instead of a word. She dropped a piece of cheese on the table, picked it up with her hands, and ate it. She gave me a devilish smile, put her hand over my mouth (instead of my eyes) and said, “You didn’t see that.”

A little later we had dessert. When the server brought it to the table, she kidded me, saying, “Didn’t you want one too?” She took a bite or two. Then I said, “You’re going to like that.” She said sternly, “I’m already enjoying it.” I said, “I should expect that from an English teacher. You want to make sure I’m using the correct tense.” For some reason, she thought that was funny and began to laugh. I guess that was because it was something she would usually say and not “me,” Oops, “I.” <G>

Oh, yes, the meal was also very good, but that wasn’t what gave us so much pleasure. Being together, and with other people, is what made lunch special. We had a good time.

A Good Evening at Casa Bella

Jazz night at Casa Bella last month did not go as well for Kate as it usually does. Two differences accounted for that. The first was the way we were seated. I sat diagonally across from Kate instead of directly across from her. That meant she would forget where I was and was a bit insecure. It also made it more difficult for her to participate in the conversation as no one sat beside her until I took that seat a little later. The second was the music itself. Most jazz nights include an abundance of old ballads that everyone our age easily recognizes. A new group of musicians performed, and their selections tilted toward less vocal and more contemporary jazz. It was not something that Kate enjoyed. I understood that at the time. Nonetheless, I couldn’t help being concerned about future evenings and what they might be like.

I am glad to report that we had a good time last night. I made sure that I sat across from Kate so that it would have been hard for her to miss me. We sat with the couple whose company we have enjoyed for the past five to six years. Late in the evening, the couple’s daughter and her husband joined us. We have also known them for many years. The musicians were the same group as last month, but they played a lot of old ballads familiar to the audience. The crowd was made up largely of seniors, mostly 65 and older. It was a very receptive audience. Of course, my only concern was Kate, and she enjoyed the evening as well. That is what matters most.

On a few occasions, I have said something about Kate’s eating habits. Though she does use her fork most of the time, she also picks up her food with her hands. I was especially mindful of that last night. We split a mahi piccata with linguini. She had finished most of her meal when I noticed that she was picking up the last bit of linguini and the capers with her hand. I don’t know whether anyone else at the table saw her, but it is the kind of thing that will be noticed sometime. It makes me wonder if we will reach a stage when I think it best not to be at a table with others. So far, it hasn’t been a problem. Even if our friends notice, they are very understanding.

Day before yesterday at lunch, we had a similar experience. She eats most sandwiches by taking them apart, separating the meat, lettuce, tomatoes, etc. Then she usually picks up the various pieces in her hand. That day she had a hamburger. I cut it into four quarters to make it easier for her to handle, but she took everything apart anyway. To me it looks a bit like a child’s plate with all the pieces of her hamburger strewn about, but there is something about sorting through the items that she likes. It could be that she is looking for things she might not like, perhaps onions, although I am very careful to omit onions from anything I order for her.

More Insecurity and Memory Issues

Yesterday was a good day. I say that largely because Kate was in a cheerful mood. She was that way when she got up. As I have noted before, that doesn’t mean there was any improvement in her memory or confusion. When she appears to be so normal, I am still surprised when she says or does something that would be more characteristic of someone with dementia.

As she cheerfully got out of bed, she said matter of factly, “I don’t know my name.” We started to leave for lunch, and she asked my name and hers. She asked again as we walked from the car to the restaurant for lunch. She seemed perfectly alert and normal. There was no sign of frustration or anxiety. She just didn’t know our names and was matter of fact about acknowledging it.

At dinner, she said, “I want you to tell me what I would say that I want if you weren’t with me?” I told her there are two dishes that she likes and that she should ask for one of them. One is Tortelloni alla Stephania. The other is Tortelloni alla Panna. She tried to pronounce both names and did pretty well, but she wanted to get it right. She asked to see them on the menu. Then we practiced her saying both names several times. As we were doing this, our server walked to the table to take our order. She asked the server to help her say them. The server started to tell her the ingredients in each one. Kate was able to convey that she wanted to know how to pronounce the names. She practiced saying them several times. The server was new and didn’t know about Kate’s Alzheimer’s. I am sure she thought this was a bit strange. Ultimately, Kate was able to give the order herself.

My point is that Kate was unusually interested in knowing what she should do if I were not there to help her. I told her not to worry that I would always be with her, but she was obviously aware of how little she knows. It must have bothered her to think how she would order a meal if she were alone even though I could see no indication that she was disturbed. On the surface, her asking how to order her meal appeared to arise from an “intellectual” rather than an “emotional” basis. On a few occasions, she has also asked me how to get home after eating out. I have tried to tell her, but it is too complicated for her to understand or to remember.

The experience with the sitter yesterday also went well. The only sign that might suggest insecurity came as I left. She said, “You’re going to leave us?” I told her I would be back a little later. She was fine with that.

Last night she picked up a photo book of her father’s family. She spent at least an hour with it. She tried to go through it by herself. I gave her the chance to do that; however, she repeatedly had questions. I ended up standing by her chair as I watched the evening news. That way I could answer her questions as they came up and read sections of the text that she didn’t understand. She enjoyed looking at the pictures of her family. I look at her initiation of things like this as her way of trying to give herself a better sense of who she is. I am glad she has such a great collection of family photos. Working puzzles is entertaining, but the photos give her a better sense of herself and her place in her family.