Creating a Caregiver’s Toolbox

Although Kate and I have experienced “ups and downs” while “Living with Alzheimer’s,” we’ve been able to live joyfully from the time of her diagnosis. There are many reasons for our success, but I believe having a large “caregiver’s toolbox” has been one of them.

We began our journey with 22 years of caregiving experience. That included all four of our parents and my dad’s significant other after my mom’s death. Three of them had dementia. We learned a lot during that time, and it made it easier for us to approach our personal experience with Alzheimer’s. That gave us the first tools for our toolbox.

My professional experience also provided relevant knowledge about caregiving. For ten years I was a social psychology professor. As I transitioned to a career in market research, I directed a master’s degree program for alcohol and drug abuse counselors. That fit well with my
social psychology background and greatly expanded my knowledge acquired in academia.

Several years later, I joined the Stephen Ministry program of our church. This program links individuals who are facing personal and/or family problems with church members who serve as understanding companions who meet with them regularly until the service is no longer needed.

Despite that background, I felt the need to know far more. Each of the people for whom we had caregiving responsibilities was unique.  I wanted to know how other people dealt with their situations.

My first step was to visit the Alzheimer’s Association website where I found an abundance of information and sources of help for caregivers as well as their loved ones. I read a fair amount of posts on various message boards but found it a little depressing. It was a comfortable place for people to express their problems and seek help, but I wanted to find a source with a more positive outlook.

That led me to check books on Amazon where I found Alzheimer’s Daughter by Jean Lee. Both of her parents had been diagnosed with Alzheimer’s on the same day. She carried a very heavy load as a caregiver. It was far more challenging than any of the experiences with our parents. Although facing significant struggles, she came away with an uplifting message for others facing similar situations.

I liked that. It led me to write her a letter. I was surprised and pleased when she replied. It turned out that she did much more for me than that.

When I created this blog, I communicated with her. It was she who introduced me to AlzAuthors, a not-for-profit organization of people who write about dementia. Becoming a member expanded my knowledge about dementia and caregiving. It also provided me with a much wider range of support. Most of them were caregivers or former caregivers. Others were people who were medical professionals who studied dementia. Still others had been diagnosed with the disease. As a result, I have been asked to serve on panels of workshops on various aspects of dementia and to be interviewed on several podcasts.

It wasn’t just the authors themselves, but many of them were also active on Twitter (now X). I, too, became active. That brought me in contact with a host of other people whose experiences have influenced me.

In addition to the impact that Alzheimer’s Daughter had on me, I was highly influenced by an article I read. It dealt with the importance of a team for a caregiver. The article’s focus was on a team of medical, legal, and financial professionals. I shared the author’s view and already had those in place, but I took that one step further.

I’ve always enjoyed being around other people. I decided to consider everyone with whom I came in contact to be a member, or potential member, of my team. That began with my family and friends but expanded to social media like Facebook and Twitter and the many strangers I encountered. This didn’t require anyone to do anything special. Even people who checked and bagged my groceries became part of my team. Servers in restaurants were especially important. As I look back, having a large team of supporters has played a big role in helping me as a caregiver.

Thus, I began life as a caregiver for Kate with a toolbox of useful tools. That toolbox has expanded considerably over the years. A carpenter always encounters situations that require new tools. That is certainly true for me as a caregiver, In future posts, I’ll talk about other tools that have been especially valuable to me. Stay tuned.

Something New, and It’s Good

For the past two and a half years, Kate and I have followed a rigid routine. The caregiver arrives at 11:00 each morning. The first item on the agenda is to get Kate dressed and out of bed. Until recently, we put her in a recliner in a sitting position where the caregiver served her lunch. She remained in the recliner until we went out for ice cream shortly after 3:30.

While I was away, Kate often felt sleepy, and the caregivers got in the habit of setting the recliner in a reclining rather than a sitting position. I began to feel that she was spending too much of her day on her back and decided to move Kate from her bed into her wheelchair instead of the recliner. Originally, I was concerned that being in the wheelchair all day might be uncomfortable for Kate, but she accepted the change without a problem.

After we changed our primary caregiver 3-4 months ago, the new person asked if she could take Kate out of the apartment. I told her that would be fine. It turned out much better than I thought. She has responded well to the additional attention she receives. I meet them for ice cream after returning from lunch. I frequently find them talking with other residents and staff in much the same way as when I am with her. Kate herself doesn’t often say very much, but she often smiles. That lets all of us know that she is happy.

This has now become a regular part of our daily routine. I’ve always felt that even the best of our caregivers don’t give her as much attention as I would like. The new routine solves that problem. It works for everyone. Kate and the caregiver like getting out of the apartment and mingling with other residents and staff. I, too, like it because it provides Kate more stimulation than when she and the caregiver are alone in our apartment. It’s a “Win-Win-Win” situation.

This is another reminder of the importance of intuitive thought or abilities. This change did not stop the progression of her Alzheimer’s. Her rational thought or ability hasn’t improved. Her memory of people, places, and things is gone. Her aphasia means that she says very few things that we can understand.

Nevertheless, all is not lost. Her intuitive thought and ability remain. As a result, we continue to enjoy life and each other. What more could I ask at Late Stage Alzheimer’s?

Selfcare (With a Lot of Help From Others)

Despite the challenges and low moments while “Living with Alzheimer’s,” I’m upbeat most of the time. That is only because I have lots of help. Most of that involves my contact with other people. I have remained as socially active as I could since Kate’s diagnosis eleven and a half years ago. Since our move to a retirement community a little over a year ago that has increased. The activities of the past ten days are a good example.

I’ve always been a creature of habit and have a routine for each day of the week. Most of those involve engagement with other people. That begins on Monday with my weekly Rotary lunch. I’ve been a member since 1983, and it’s good to connect with people I have known for quite a few years. I also eat out (outside the grounds of our retirement community) for lunch on three other days of the week. Every Tuesday and Sunday, I eat lunch at two different restaurants at which Kate and I ate regularly for eight or nine years before the pandemic in March 2020. Since she has been unable to get out, I go alone; however, I know the managers and staff, and I am usually served by the person who has served us/me for years. Since our move, I have found a new spot for my Saturday lunch. As a regular, I’ve gotten acquainted with the owner, my server, and a few others who work in the kitchen.

The other three days of the week I have lunch in the café downstairs in our building. It’s a very friendly community. We’ve lived here just over a year, and I’ve eaten alone fewer than five times. On the way in, I usually see someone who is already seated and join them for lunch. If I start out alone, someone joins me.

Some days I find myself in more conversation than expected. One of those occurred last Thursday. In advance, I had invited a couple to join me. We were seated only a few minutes when someone else asked to join us. When we finished, I went down to the main dining room to return a cloth napkin that Kate had brought back to the apartment the night before. As I entered, I saw another couple who had just been seated for their lunch. They asked me to join them. When I told them I had just eaten, they said, “Why don’t you have a cup of coffee with us?” I accepted their invitation. We spent the next hour in conversation.

Every afternoon at 3:30, the caregiver and I take Kate to another café on the grounds for ice cream. The seating is beside the main hallway that links all the buildings, eating venues, meeting rooms, a gift shop, and a hair salon. We spend an hour there and have conversations with residents and staff as they go from one place to another. I think this is good for Kate and know it’s good for me.

At 4:30, we go directly from having ice cream to dinner. That’s yet another time for social contact. That begins with the staff since there aren’t that many other residents who eat as early as we do. Everyone on the staff knows all of the residents. They treat us very well. During any given meal, we may have as many as 5-10 different staff drop by our table to say hello and often chat for a few minutes. As other residents arrive, some of them stop by our table. As we leave, we stop at several tables to do the same for others who arrived after we did.

That’s the daily routine, but there are also many other impromptu encounters. This past Sunday, the server had just brought my coffee when a couple I know was seated at a nearby table. They asked me to join them as they have done on a couple of other occasions. It had been a while since I had seen them, so I accepted. All three of us are big talkers, and we spent the next hour and a half talking and eating.

There are always other unanticipated events that keep me going. Two of those occurred during the past two weeks. One of those involved a new caregiver. She replaced one who was quite good with the basic CNA (Certified Nurse Assistant) skills but not so good with “Tender Loving Care.” Our new caregiver is adequate with the basic skills and very good with TLC. The second day she was with us I walked into the living room where Kate was looking at the caregiver and smiling. They were holding hands. That never happened with the previous caregiver. I was elated.

As you would expect, how Kate is feeling has the greatest impact on how I feel. Her Alzheimer’s, Covid, and stroke have left her less upbeat than she was before. She rarely says a word until mid-afternoon; however, some days she is more cheerful than others. She’s had a number of days like that during the past two weeks.

I shouldn’t close without mentioning the support I get from those who read this blog as well as my followers on Twitter. You have often given me words of encouragement at moments when I needed them most.

It is true that I am not as active in the local community as I used to be, and I don’t participate in many of the events on the grounds of our retirement community. Nevertheless, the things I outlined above boost my spirits considerably. I’m living well and grateful for that. I know of many caregivers who are not so fortunate.

We’re Adapting.

I am mindful that my previous post was not as upbeat as usual, but I do believe it was an accurate portrayal of our situation at the time. Since then, Kate has been pretty much the same except that we’ve had more bright spots. Here are some of the positive signs that have occurred in the past week or so.

Although Kate is still not speaking much, she has surprised us on a number of occasions. Sometimes that has occurred with the caregiver and me, but it has also happened with other residents when we are out for ice cream or dinner. I don’t think I’ve heard her say more than three or four words at a time; however, it’s been exciting to hear her. It clearly communicates that she has understood what has been said to her and that she has responded appropriately.

Two nights ago, I was getting something to drink when a resident who was on the way back to his apartment asked if he could stop by our table and say hello to Kate. I told him that would be fine, but that she might not respond. He later told me she said, “Hello.” Our caregiver also told me that another person had spoken to her and she responded to him as well.

Music continues to play an important role in our lives. One night after dinner, I played an album of The Kingston Trio. She smiled and moved her head in rhythm to the music. I started singing along, and she tried to mouth the words as best she could. The best part came when they sang “M.T.A.” I wasn’t sure she would understand, but I explained the storyline to her. As we sang together, she broke into laughter. She must have understood more than I expected.

We had a touch of spring last week. That gave us an opportunity to sit on the balcony after dinner. I took my phone and a small speaker with us and played an album of The Carpenters’ hits. She was engaged for almost fifty minutes. For a good part of that time, we held hands as her facial expressions communicated how much she was enjoying the music. Moments like this are very special because she hasn’t expressed much emotion since her stroke seven weeks ago.

She has also responded to several things I have read to her. One of those is The Velveteen Rabbit. Another is a letter written by her grandfather to her grandmother on their 40th wedding anniversary. One other is a resolution given to her by our church celebrating her 19 years of service as our volunteer church librarian. These things may not seem so special, but they let me know that the Kate I have known so long is still with me.

She sleeps more in the morning and goes to sleep earlier at night. That leaves us with less quality time together. She experiences longer periods of time when she is awake but doesn’t respond to anything I say or seem to recognize me. Because of that, I was delighted yesterday when the caregiver told me that, “out of the blue,” Kate said, “Where’s my husband?” Life is not the same, but we’re adapting.

Reflecting on Visits with Out-of-Town Friends

This past Saturday Kate and I went to Nashville to visit our longtime friends, the Greeleys. It was a visit very much like recent ones we have had with two other couples who are also longtime friends. All three were good visits for me, but they presented a challenge for Kate. I had exchanged emails with each couple prior to the visit. I told them that she is sensitive about being excluded from our conversations. All of us were interested in seeing that she was a part of the group.

In practice, that is very hard to do. We have a long history of conversations, and we fall back on the way we have always interacted. We would have to devote all our effort to make Kate an integral part of the conversation. This is not a problem that is the fault of our friends. I get caught up in the conversation myself and am the biggest talker of them all.

There is no problem when it is just Kate and me. We are able to converse easily. That involves a significant amount of repetition and a narrower range of topics. It would be hard for a group to spend a visit of two or more hours doing that. Eventually we would be back to where we are now, three of us involved in a conversation while Kate sits and tries to listen but can’t follow.

When I face a situation like this, I like to think of the things that are within my control and those that are not. One of the things I can’t control is Kate’s Alzheimer’s. She is on a course that will eventually prevent her from participating at all. We may be approaching that now. I never really thought about this issue before being faced with it. If I had, I probably would have expected a transition in which her ability to participate and her desire to be part of the conversation declined at the same time. That is not happening. I shouldn’t be surprised. She can neither remember things from the past nor learn new things, but she still wants to remember and learn. I am reminded of what I have heard so many times in the past, “Well, at least she doesn’t know.” Well into Stage 7, Kate clearly does know that something is wrong with her. But still she wants to remember, to learn, and to converse like everyone else. This is frustrating and sometimes frightening for her.

As for what is under my control, I would say my options are limited. I could avoid having these visits. That is something I don’t want or intend to do unless the problem is more serious than it is now. I could also make a few suggestions to our friends about things that Kate can appreciate. One thing that comes to mind is beauty. Everyone has artwork, flowering plants, or other items of aesthetic value they have collected over the years. Kate might take an interest in those. Her tastes now are very simple. She still loves the paper doilies she brings back from one of the restaurants we visit every week. She loves children. She might enjoy looking at photos of friends’ children or grandchildren.

There is also something else that I plan to consider. I could withdraw from the conversation periodically. That would leave the conversation to Kate and our friends. That combined with the knowledge of things that might appeal to her could be just enough to help Kate enjoy herself. Right now, I haven’t decided what to do. We don’t have any other visits scheduled and won’t for a while. My inclination, however, is to make a last attempt to include her in some way. If that doesn’t work, I will accept that the time has come when it isn’t possible for Kate to be as much a part of the conversation as I had wanted. That’s what I’ve had to do with her loss of memory and her ability to take care of herself. Alzheimer’s requires caregivers to accept a lot of things that we cannot change.

A Good Start and Finish

Our routine was altered a bit yesterday. Kate called for me about 9:00. She was smiling when I reached her bedside. She wanted to go to the bathroom. She was confused but did not seem to be bothered. She just wanted my help and accepted it through the whole bathroom routine including showering and getting dressed. It was early enough to get her to Panera for a muffin and get back home just after 11:00. That worked out well because I had asked a church friend to take her to lunch. I had a lunch meeting and needed to leave by 11:30. Kate was tired and wanted to rest a while. I explained to our friend that she had gotten up early and might want to rest a little longer before they went to lunch.

When I got home, Kate was still resting. The friend said that she had tried to get her interested in going to lunch, but she didn’t want to. The friend said to Kate, “I think you wanted to wait for Richard.” Kate nodded. I was surprised because this is someone that Kate likes very much. In fact, everybody I know likes her. My only explanation is that while resting, she completely blanked on who the friend was after being excited about having lunch with her. I know that happens with me. It still surprises me when we have been talking about our  marriage and children and then says, “Who are you?”

It was after 2:00, and I took her to Chick-fil-A for a chicken sandwich. It turned out that she had a hair appointment shortly thereafter. As the stylist walked her to the front to meet me, Kate asked where I was. I stood up to greet her. She was greatly relieved to see me. I have become a security blanket for her.

She rested at home for an hour before we went to dinner at Casa Bella for jazz night. We sat at a table for twelve. She must have felt a little left out. She tried hard to participate. Then she retreated for the remainder of the dinner. The music was good, but neither of us was taken with the singers themselves.

When we got home, it was time for bed. Soft music was playing, and we were both relaxed and happy.

Our Thanksgiving

Like so many other things, Thanksgiving has come and gone. Despite the rough beginning in the early morning hours, it was a nice day though it was bitter-sweet. There was no denying the dramatic change in Kate since last year when we were in Texas with our son’s family. I predicted then that it might be our last Thanksgiving with family, and it was.

I’m not at all sure what next year will be like, but I know Kate’s changes will not be for the better. Kate is unable to grasp this, but I am convinced by the things she says that she recognizes her condition is not good. She was essentially saying that when I went in to get her up for lunch yesterday morning. I said, “It’s Thanksgiving, and I’m thankful that I have you.” She reached up and grabbed both of my arms and said, “And I am thankful for you.” I said, “I know that.” She said, with emphasis and with a slightly sad expression on her face, “I want you to know I really mean it. I mean it.” She knows she couldn’t make it without my help and is very appreciative. I continue to be amazed at her self-awareness.

Since we eat out for lunch and dinner, finding a place to eat on Thanksgiving is a challenge. We did, however, have a good Thanksgiving meal at Ruth’s Chris. For a long time, Kate has been able to get along quite well without anyone’s suspecting she has Alzheimer’s. That is one of the big changes that has occurred in recent months. It was evident yesterday.

As the hostess walked us to our table, she was walking rather quickly. Kate is always very slow. The hostesses at our regular places are well aware and take their time. I decided to let this one know. We hadn’t gone far when I looked behind me and saw that Kate had stopped to talk with a woman at another table. I walked back and discovered that she was complimenting the woman on her hair. She was overdoing it, and I know the woman thought it somewhat strange. When we got to our table, we went through something with which I am accustomed. I am sure that our hostess was not. She was, of course, supposed to wait until we were seated and hand us our menus. It took what must have seemed to her an interminable amount of time for Kate to realize which seat was hers and to be seated. I was glad I had informed our hostess. She was very understanding.

After Kate’s making a few initial comments to our server, I handed her one of my Alzheimer’s cards. I was glad that I had although she might have guessed anyway. Both when I ordered and when the food arrived, Kate asked, “What is that?” She was referring to the sweet potato casserole. She also asked the same question when I ordered a filet for us to split. I think she was confused about the whole situation. We are not regulars at Ruth’s Chris, and it had an air of formality that we don’t experience at most other restaurants. She was very concerned about doing something wrong and asked my advice a number of times. That is not something unusual, but the way she asked sounded like she was more uneasy about this situation.

Despite these things, the lunch went quite well. There were two other couples seated at the tables beside us, but the sound was quite muffled. We felt a certain measure of privacy even though the restaurant was packed. We had a good conversation and talked about the many things for which we are thankful.

Once we were home, Kate wanted to rest and did so for about an hour before getting up. I asked if she would like me to read The Velveteen Rabbit to her. She did. She was more enthusiastic this time than before. Once again, I was also touched. It is so good to see her enjoy herself in this way.

It didn’t take long to finish. Then I asked if she would like me to read some of the Diary of Anne Frank. In spite of her previous interest, I was a little afraid this would sound like too much for her. I am glad to say I was wrong. We read another 20 pages. As I did before, I asked if she wanted me to continue after each entry. We only stopped because it was time for dinner.

It was another good day for us. The meaning of this holiday did not fall on deaf ears. Each of us experienced the spirit of Thanksgiving.

Music Continues to Provide Needed Therapy

Kate and I have relied heavily on music as a form of therapy. Unlike so many other things, that is something that has not yet become a thing of the past. I would have to say though that the way we have used music has changed over the years. At the beginning, we entertained ourselves by attending musical events . These included opera, musical theater, and a variety of concerts. Over time, I included more music at home and in the car. Unlike the early musical events, I chose music for its therapeutic benefits rather than just entertainment. Initially, I used music to calm Kate when she had a panic attack. Those occurred exclusively when I rushed her to get ready to go places. I would play the Second Movement of Brahms Violin Concerto and similar movements from other concertos. That seemed to relax her.

Before we stopped going to evening events, I expanded our music at home with a wider variety of music. A year and a half ago, I bought a number of DVDs of musicals that were a good way to end the day. Kate especially liked Les Miserables which she watched seven times in seven weeks. Ultimately, she tired of videos of musicals, and I have since relied on YouTube videos of concerts or portions of them for our evening time for relaxation before going to bed. Among those, I have found the Andre Rieu and the BBC PROMS concerts particularly good. Often, however, I have done a search on a particular singer. Then I let YouTube follow with whatever their algorithm selects for us. The best thing about YouTube is that they always have new videos and a wide diversity of musical genres.

The musical programs at Casa Bella stand out for the way they combine both music and a social occasion that Kate has been able to appreciate. Music is clearly the greater draw, but the fact that we have sat for years with essentially the same people has made it easier for Kate to enjoy each evening. Over the past six months or so, I have had an increasing concern that she is becoming less comfortable with the social aspects of these evenings. That is largely because we more frequently have been seated at a table with as many as six or seven other people, some of who we haven’t known. That makes it more difficult for Kate to follow and to participate in the conversation. That has made me think about requesting a table for two rather than sitting with a group. Recently, however, we have had some evenings that have given me reason to believe we may be able to continue somewhat longer at our regular table.

This past Thursday was one of those times. There were six of us, but we have sat together with one another for several years now. Of course, Kate can’t remember that, but she is comfortable when she is with them. As I suggested earlier, it is music that is the primary attraction, and last night was the best night of jazz that we’ve had. The singer and the man on the keyboard were superior to others we have heard previously. The crowd responded enthusiastically. Kate was, perhaps, the most enthusiastic, and that may be an indicator of an ultimate problem.

She has always been more expressive of her pleasure than others sitting around us. Off and on throughout most of the songs she likes best, she says both “Wow” and “Oh.” She seemed to be louder this week than in the past. That would fit with her other expressions of emotion lately. This wouldn’t be a problem at all when the audience is applauding, but it seems a bit “over the top” during the music. She can be heard easily at our table and those next to us. The people with whom we sit are very understanding, but I occasionally wonder if this is ever annoying to them. At some point, I may speak with our friends at our table and gauge what I think is best. It may well be that the combination of Kate’s feelings about being with others and emotional behavior will be the thing that leads me to sit at a table for two. Whatever we do music is no less important for either of us today than it was at the beginning of her diagnosis, and I am optimistic that it will remain that way for the foreseeable future.

We Still Have Happy Moments

In my last post I mentioned a sad moment Kate and I had experienced when she was so disturbed about the way she looks. I’d like to balance that with a couple of happy moments. We still have them, and they seem more important now than ever before. I think about “moments” more lately because it seems harder for me to describe a full day in a single word.

Two times in the past few days we have had an especially good time looking through her family photo books. Both of those occurred after her afternoon rest. In each case, I took the initiative of suggesting we sit down side by side and look at one. I make a point of that because she often looks at the cover of one of her books, but she doesn’t spend much time with them by herself. I think it must be that she doesn’t recognize the people, at least most of them, and she doesn’t have the ability to recall or imagine anything about the pictures or the people in them. She needs someone to give her specific names and information that provides the context for what her eyes see.

As it is for other activities we share together, I have as much fun going through the photo books as she does. Of course, a significant aspect of the pleasure for me is seeing her eyes light up and hearing her enthusiasm as we look at each photo. She continues to comment on people’s smiles and their eyes. Her primary interest appears to be in the mood of each person. I don’t recall her mentioning anything about clothes that people wore or anything else. She does say good things about her family as a group. Her strongest feelings are for her parents, especially her mother, but she expresses those mostly when she looks at some of their framed pictures around the house.

I find these moments a good substitute for our afternoon trips to  Barnes & Noble. We rarely go there now. When we finish, it is about time for dinner. It sets a nice tone to our relationship that extends until bedtime. That remains the most predictable good time of the day. I think that is because neither one of us feels any pressure. It’s a time when we just relax together.

Yesterday Kate was in a good mood when she got up, and it lasted all day. At lunch we had another happy moment. Kate was unusually talkative. I can’t begin to remember all the things she said. A lot of it involved how fortunate she and I have been. She was upbeat about everything.

There was a sad moment, however, when the server stopped at our table and said something nice to Kate. After she left, Kate commented on that. She specifically noted that the server had talked to her and that people usually talk to me. I have noticed the same thing. She didn’t seem disturbed about it. I think there are two things that account for that. One is that people don’t know what to say. The other is that Kate is slow to respond. That makes it hard for her to play an active role in a conversation with three or more people.  The conversation then drifts to one between the others and me.  Maybe that is why conversations like the one we had yesterday mean so much. She is relaxed and can be herself.

Last night we had dinner with a couple we know from our music nights at Casa Bella. We arrived first, and Kate already seemed like she needed to prepare herself. As she often does when it is just the two of us, she picked up the menu. She quickly found that she couldn’t read it and asked me what she should get. I explained that she usually gets either the Tortelloni alla Stephania or the Tortelloni alla Panna. I told her I would order for her and that she had the Stephania last week, so she might like the alla Panna this week. She tried several times to pronounce it.

About that time, our friends arrived. As soon as they were seated, Kate asked their names. She tried to repeat them back and was able to do so after a couple of tries. Of course, she forgot them immediately, so she asked again several times back to back before stopping.

Then she gave her attention to what she should order. I told her I thought she would like the Tortelloni alla Panna. She tried unsuccessfully to pronounce it. Then she asked Lisa. She and Lisa worked on the pronunciation a few times. Fortunately, the server came for our order a few minutes later, and I gave her our orders. Kate was off the hook. She must have felt a sense of relief to have that hurdle behind her.

She really wanted to be a part of the conversation, but it was too hard for her. Lisa is a fast talker. Ben speaks softly. At first, she kept asking each of them to repeat things that she didn’t understand. After a while, she just gave up. Because it was such a challenge for Kate, I thought this was likely to be one of the last times we get together. When we said goodbye, I asked Kate how she had enjoyed the evening. She said she enjoyed it.  She didn’t seem bothered in any way. Nevertheless, I believe situations like this may become even more difficult in the future. I will certainly stop them if that happens. Until then, I think it is good for both of us to have the additional stimulation of being with other people.

Experiences like this make our happy moments together even more important. I am optimistic that we still have a lot of them in the days ahead whether it is just the two of us or with others.

A Successful Evening at Casa Bella with a Emotional Finale

Last night was Opera Thursday at Casa Bella. As I have said before, their music nights have been very important to us both from an entertainment standpoint as well as socially. Recently, however, I have been concerned because we often have six and sometimes eight people at our table. Large groups are difficult for Kate. She does much better when we are with one other couple. That has led me to think about the possibility of our moving to a table by ourselves. I haven’t mentioned that to the owner of the restaurant, and the last time we were there everything was fine. Last night was even better.

Our seating arrangement varies a little from night to night depending on the number of people at the table. The men have followed an unspoken rule that our wives sit on the side of the table facing the singers while we have our backs to them. I started to seat Kate where she sits most often. She asked where I was going to sit. I pointed to the seat across from hers and said, “I’ll be right there across from you.” She said, “I want you to sit beside me.” This is in keeping with her increasing insecurity and desire to be with me and to hold my hand. Not wanting to take the seat of the woman who would be joining us later, I helped her into the seat beside me on the other side of the table. That meant she couldn’t easily see the singers, I felt the priority was being closer together. That turned out to be a good thing for two reasons.

First, the son of the couple we always sit with was there. He took a seat at the end of the table with his mother on his right and Kate on his left. His father took the seat across from me. Although Kate can never remember the couple, she always feels comfortable with them. They are always able to put her at ease. This made for a good social experience for her.

The second reason the seating worked out well related to Kate’s response to the music. As I have noted a number of times, her emotions are exaggerated more than in the past. The music was especially good, and Kate responded accordingly. Most of the evening she didn’t respond audibly the way she sometimes does, but she was visibly moved.

The most dramatic moment came during the last song of the last set when they often sing a few ballads or showtunes. Last night they ended with “For Good” from Wicked. In the musical, this is a duet sung by Glinda and Elphaba who tell each other their lives have been changed for good by the other.

Although Kate has difficulty following conversations, I am often surprised when she responds to specific words or phrases in songs. She picks up far more than I expect. In this case, I believe she was moved by both the music and the lyrics. She began to whimper very soon and held my hand throughout the song. During the last couple of stanzas, she was moved even more. As the song ended, she put her head on my shoulder and her arm around my neck and broke into a cry. She wasn’t loud, but people nearby would have easily noticed. As we hugged, I saw a couple at the table beside us who were looking on. They are aware of Kate’s diagnosis and have been very compassionate in their response to her. When the program ended, they came over and gave her a hug.

For me it was also an emotional moment. I can’t know exactly what she was thinking. I do know that she recognizes she has “a problem” and that she needs me. I know she understands certain words and phrases from songs. Did she understand the words of the song and draw a connection to our relationship? Was she simply moved by the music and not the lyrics? I only know it was an very emotional moment.