More Restroom Issues and Our Visit with Ellen

I am glad to report that I was able to get Kate up with sufficient time to arrive at Maggiano’s fifteen minutes before our noon reservation. I want to say in passing that Kate did not want to get up but was in a cooperative mood and got up with a little urging. After going to the bathroom and starting to get dressed, she wanted to lie down again. She seemed quite tired, and I gave her a few minutes to relax.

Before arriving at the restaurant, I decided to use the valet. Previously, we have found parking easily at that time of day, but it is getting to be more trouble for Kate to walk. In the past, I tried to give her this opportunity to walk because she needed it. At this stage, my priority has shifted. Now I am influenced more by Kate’s convenience than her need for exercise. That worked well yesterday, and I will use it next time we are there.

Our meal went well. We had an appealing server, and the manager whom we have met on previous occasions dropped by our table to speak. Ellen’s memory care facility is located about forty minutes from there. I suggested that it would be good for both of us to use the restroom before leaving. As we arrived at the door of the women’s room, a lady was coming out and told me no one else was in there. I walked in with Kate and took her to the stall. Then I went to the men’s room and returned to wait for her just outside the door. In a couple of minutes, a woman came out and asked if my wife was inside. I told her she was. She told me it sounded like she may have been having some trouble and that no one else was in there. I went in to check on her. She was still in the stall. She said she was all right and was just coming out. She wasn’t sure how to open the door that she had locked with the latch. I was able to poke my finger between the door and the side of the stall. That enabled me to show and tell her how to lift the latch. That went smoothly.

She came out and I was about to walk out when she said, “Don’t leave me.” She looked a little panicked as though I were forsaking her. I remained with her and helped her dry her hands and arms. This may seem like a little thing, but when she washes her hands or brushes her teeth, she almost always washes her arms and, sometimes, her face. In the process she can get pretty wet.

We finished up and left the restroom before anyone else came in. Then we made our way to see Ellen. She was sleeping in her wheelchair in front of a football game on TV along with several other residents. She awoke quickly and was glad to see us.

The visit went well, but it was different that those in the past. During the past year and a half her speech has declined significantly. We could understand very little of what she said. We only picked up snatches here and there. Once in a while, she would say something in a short complete sentence. Then we wouldn’t understand anything that followed.

Ellen may have recognized the problem as well. I know she wanted to move around more than in the past. Previously, we have stayed either in her room or one of the other public spaces. This time we started out in the activities room. It wasn’t too long before she wanted to go to the main open area between five or six resident rooms on one side and an equal number on the other. From there we went back to her room. Then she wanted to go around the entire interior of the facility that consists of two other “neighborhoods” identical in design to the one in which she lives. She is wheelchair bound, and this may be her way of “walking around” the way other residents in memory care walk “around and around.” We ended up at the table where she eats her meals. It was about forty-five minutes before dinner, but she wasn’t the only resident who had taken a seat early.

Just before we left, another resident in a walker stopped by and told us she was having a bad day. She mentioned several things that had happened to her that day including losing her purse. I doubt if any of these things happened, but Kate and I sympathized with her. She seemed to appreciate that and said so when we left. We had another conversation with a resident as we entered. We had seen her on a few of our previous visits.

We were there almost two hours and around a lot of other residents as well. Sometimes I am concerned about how Kate is responding to being in a memory care facility. She could easily qualify to be in memory herself. Does she ever think about this? I don’t think so. I haven’t seen the slightest indication that she sees herself like any of the residents. Does she even understand that all the residents she sees have some form of dementia? Again, I think not. I doubt that she has a grasp of what dementia is. She knows she has problems, but I believe she still sees herself as normal. When Kate was at an earlier stage, I avoided taking her with me to visit friends in memory care. Now I don’t think she processes much about the nature of the facility itself or the residents who live there.

Despite the restroom incident, the day had gone well. Nothing happened that would make me think we should stop coming to see Ellen. I say that even though Kate can’t remember who Ellen is before we get there. While we are there, she seems to sense the connection. That, and the fact, that Ellen clearly remembers us is enough for me to continue our visits though I know we are approaching the end.

A Few Thoughts on Restrooms and Travel

I am writing this morning in our hotel room in Nashville. We came up yesterday afternoon to visit with our friend, Ellen, who had a stroke four years ago while visiting her daughter who lives here. Ellen has never returned to Knoxville and is now in memory care. She and Kate were best friends at the time of the stroke.

We cut out international travel in 2015. We made what I believe is our last trip to our children’s homes (Memphis and Lubbock) for Thanksgiving and Christmas last year. But we have continued day trips to Nashville and have recently made them overnight trips. That has been much easier because it is so difficult to get away early in the morning. I consider it a nice treat as well. Sometimes we meet other friends who live in the area on Saturday afternoon. We have a nice dinner and get to bed at a decent hour that night. Then we visit Ellen right after lunch on Sunday afternoon. We usually stay with her an hour or two and get back home in time for dinner.

Each time we make a trip, I reflect on how travel is going and wonder how long we will be able to keep it up. So far, I have been optimistic about continuing. With the changes that Kate is making, I am becoming more doubtful. I’m not sure at all, but I have the impression that other couples in our situation don’t generally continue to travel as long as we have. Travel can be very disorienting and disturbing to the person with dementia. In addition, the logistics place a greater demand on caregivers. It’s enough to get ready for one person. Packing for two is a greater challenge. When one person has dementia, the issues double.

Yesterday we had lunch in Knoxville before leaving. Each of us went to the restroom at the restaurant. As always, I walked Kate to the door of the ladies’ room. I opened the door and looked around to see if anyone else was in there and to identify the stall that Kate should use. I pointed it out to her, but that wasn’t enough. I had to walk her to the stall and direct her to the toilet. Then I stood outside the door in case she might need me. When she didn’t come out in what I thought was a reasonable length of time, I opened the door. She got a look of relief when she saw me. She couldn’t explain to me what had happened. My guess is that she didn’t see the door to exit the restroom and didn’t know where I was. This would not have been the first time this has happened. Usually, however, she calls for me. She might have done that this time, but I probably opened the door earlier than I have done on other occasions. What I do know is that it was a frightening experience for her. It was a little thing and forgotten quickly, but in that moment, she was really scared. It reminds me of being in a house of mirrors when I was a child. I was frightened. It seems to me that Kate, without a memory or the rational ability to deal with the situation, would be even more frightened. It was another reminder of what a security blanket I am to her. She generally doesn’t know what to do in a situation, but she counts on my knowing for her.

The drive to Nashville was an easy one. We relaxed at the hotel about an hour before going to dinner. We had a pleasant dinner and a good night’s sleep.
Kate was up at 5:00 this morning to go to the bathroom. We were back in bed by 5:30, but I don’t think either one of us was asleep again before 6:00 or shortly thereafter. I got up at 7:00, dressed, ordered and ate breakfast in the room, and checked email. I have lunch reservations at noon but hope that I will be able to get Kate up early enough to get there by 11:30. That would allow a more leisurely lunch before our visit with Ellen.

As I think about it, I don’t believe overnight trips like this are any more stressful for Kate than being at home. Yesterday’s incident in the restroom was in Knoxville before the trip. That is an issue that will have increasing implications whether we are home or on the road. I also find that she is confused about where she is when we are in a hotel, but that, too, is something that regularly happens when we are home. If we were to discontinue our trips, it would probably relate to the extra challenges for me. I don’t believe we are there just yet, but we may be getting closer. In the meantime, I am also trying to be more sensitive to how she feels when we travel. If I sense that she experiences anything more discomforting than being at home, that will be a clear indication that it is time to stop.

A Bump in the Road While Preparing for Bed

After dinner last night, Kate and I spent over an hour looking at one of her family photo books. Both of us enjoyed the time together. Then I noticed that it was a few minutes after 8:00. That is when I usually try to wind down with the intent of getting her in bed before 9:00. I try to follow her between 9:30 and 10:00 so that I can get up between 5:30 and 6:00.

As usual, Kate wanted me to give her guidance on what to do. I told her she could start by brushing her teeth. I do that because she normally gets water on her clothes. If she puts her gown on first, she may need to change it before getting in bed. As it turned out, she forgot each of the things I said she should do even though I was giving her only one thing at a time. Before getting in bed, she brushed her teeth three times and used three hand towels and several wash clothes.

She was having a hard time following my directions, and we both got a little frustrated. She must have felt bombarded by instructions. I wanted to take my shower, but I wanted to see that she was ready for bed before then. Once I finally her night clothes on, I went to take my shower with the understanding that she would get in bed when she felt ready.

The first thing I noticed after my shower was that she was not in the bedroom. I went to the other bedrooms to see if she might be in one of them. When I found her, she had just pulled the covers back on the bed and was about to get in. I told her I would like for her to sleep with me. She spoke to me in hushed tones as though someone else was in the house, and she didn’t want them to hear our conversation. I tried to tell her we were alone, but she didn’t want me to speak. I walked her to our bedroom. She seemed a bit nervous and told me she didn’t know where to go. I felt bad about that. This was the first time in a year or so that I have gotten in the shower before seeing that she was in bed. She also felt bad about snapping at me a couple of times during the whole process. She apologized as she normally does. I apologized to her for rushing her.

She must have been unusually tired because she didn’t take any time to pull her hair once she got in bed. She went to sleep rather quickly. That is the first time I recall her doing that in a long time.

It’s the Thought That Counts.

Long before Kate’s diagnosis, one of the first signs I noticed was that she often failed to prepare for dinner. We had eaten dinner out a good bit since she retired, but we still ate at home for most of our evening meals. Gradually, I noticed that she wasn’t shopping for groceries or thinking about dinner at all. I responded by suggesting that we eat out whenever she hadn’t prepared our dinner. Then I began to cook a few meals. I didn’t want to do that all the time, so I started alternating between a few home-prepared meals with meals I brought in from restaurants.

Kate appeared not to notice the shift in responsibility for meals from her to me, and rarely offered to help. As I recall, that suited me because it was hard for her to do things the way I thought they should be done. Difficulty following procedures is another of the symptoms that accompanies Alzheimer’s.

She has rarely offered to help with any of the household chores; however, several times in the past few months, she has done so. At this point, I felt it was good for her to feel useful. Each time I accepted her help.

Last night as we returned home from dinner, I stopped in the driveway and told her I was going to get the mail. She said, “I’ll get that for you. Just go on, and I’ll meet you in the house.” I gladly accepted but was concerned about her walking from the mailbox back to the house. I moved the car forward but stopped before entering the garage. That enabled me to watch what she was doing.

When she got out of the car, she stopped to look at the plants along the driveway. I watched to see if she would remember to get the mail. She didn’t. She walked up the driveway to the back of the house. She stopped at several shrubs and pulled off a few small limbs. This was a reminder of the days when she spent as much as 6-8 hours a day doing just that. It’s been about three years since she stopped because she had stripped the shrubs of all their leaves as well as the branches. They had either died or were in such bad shape that I had to remove eighteen of them. Last year I engaged someone to get the landscaping back in shape. The yard is now getting back to where it was before.

I wasn’t worried that this might be the beginning of repeat of that experience. Instead, I was especially appreciative of Kate’s desire to help at this particular point. After all, her memory doesn’t permit her to follow through with almost anything she starts. It reminds me of an old song, “Little Things Mean a Lot” and the saying that “It’s the thought that counts.”

Update on In-Home Care

It has been two years since I began in-home care for Kate. I spent about eight or nine months considering the move. Then I agonized over how to tell her. Because of her memory problem, I decided there was no reason to bring up the subject too far ahead of time. I told her a few minutes before the sitter arrived for her first visit. She asked why I was having someone stay with her. I told her I was feeling uneasy about leaving her alone and that I would feel better if someone were with her. She said, “Okay.” That was it. I was surprised at how well it went.

We started with sitters three afternoons a week (Monday, Wednesday, and Friday) four hours each visit. We continue that same schedule two years later. Fortunately, we have kept the same sitter on Wednesday and Friday. We have had three different sitters on Monday. Each one has worked pretty well although I have a preference for the one who comes twice a week and have felt that way from the beginning.

Kate and I have both adjusted well to the sitters themselves as well as the schedule, but we have responded differently. At first, Kate seemed to do pretty well. She may have even enjoyed having the companionship. As she became increasingly dependent on me, she also became more insecure about my leaving her. She would act surprised (I’m sure she really was) when I told her I was leaving and would say something like “You’re leaving? Why don’t you stay with us.” That left me to explain why I needed to go. She always gave in, but she also looked disappointed. More recently, even though she is more dependent on me now, she has been very accepting of the sitter. She often expresses enthusiasm when they walk in. In the past 2-3 weeks, she has shown no sign of disappointment that I am leaving. Of course, that makes me happy. I just hope it continues.

I have adapted differently than Kate. From the outset, I hated to leave her. Over time, however, I have been more comfortable. That is especially true recently as Kate has responded more positively, but I still feel a little uneasy when I leave her. My own experience has made me think about my dad who never wanted to have someone stay with my mom. My brother and I tried to get him to accept help and succeeded in getting him to try it. He let her go after one or two visits.

Despite my feelings, I have continued because I felt it was the right thing to do. I believe it is important for me to keep up with some of my outside activities. My plan for Kate’s care has always included bringing in help as needed. I am actually surprised that I have not felt the need to increase the number of days we have a sitter. In many cases, caregivers don’t have paid help because of the expense. In our case, we have long-term care insurance that will pay up to eight hours a day seven days a week. The only reason I don’t take advantage of that is my desire to spend as much time with Kate as I can. I know that we are approaching a time when I may not be able to take her out with me as we have done before. I have a stronger desire to enjoy all the quality time we have left than to use the insurance just because we have it.

I think I am in a good position. My intent is to continue monitoring our needs and increase her in-home care as needed.

A Happy Moment This Morning

For the second day in a row Kate was up early. Yesterday she was ready to get up around 9:00. Today it was only 7:30. This was one of those mornings she clearly did not realize she was in her own home or my name or relationship. Perhaps because she didn’t know who I was, she wasn’t quite as eager to have my help. Several times when I tried to help, she said (in an unflattering way), “You think you know how to do everything.”

She started warming up to me as I helped her dress. Entering the family room provided the catalyst she needed to feel better about the day. I walked with her around the room as we looked at the flowers inside and out. I told her I wanted to show her something and walked her to a photo of our son when he was about eight. She always loves this picture. Today was no exception. When she asked who he was, I told her he was our son. She reacted to the word “our” and said, “No.” I said, “Well, he is your son.” That was better. I also showed her a picture of her father.

From there we went into the kitchen where I had set out her meds. After she had taken them, she noticed a card on the island and asked what it was. It was a card from her P.E.O. sisters. I had shown it to her last night, but she had forgotten. I read it to her along with the handwritten message inside. She was touched, and tears filled her eyes. She loved the beauty of the cover page that had three hearts on it as well as the tender message itself and asked if she could take it with us. I told her that would be fine. It was still a few minutes before we left, but she held the card in her hand and admired it. She asked several other times if she could take it with us.

Once we were in the car, she held it against her breast and said, “I’m going to keep this forever.” She kept talking about how beautiful it was. As we walked from the car to Panera, she held it carefully in her hand and told me once again how much she liked it. I said, “I love you.” She said, “You know what I think. You’re a good guy, and I think I’ll learn to love you too.”

We took our table at Panera, and  she carefully placed the card standing upright so that she could look at it while eating her muffin and working on her iPad. A short time later she picked up the card and looked at it again. Knowing she wouldn’t be able to read the note, I asked if she would like me to read it for her. She did. When I read “Dear Kate,” she said, “How did they know my name?” I explained that she had been a member for many years and had served as president. She had no memory of that at all.

Incidentally, the blueberry muffin was also a big hit this morning. It was like this was the first time she had every had one. Thirty minutes after finishing it, she wanted something else. I asked if another muffin would be all right. She beamed. Thus far, the morning has been just another Happy Moment of many that she and I experience. She remembers very little, but she is not “suffering.”

Noticing the Signs of Dementia

Earlier this week I saw the following tweet from Dr. Oz.

I recently found out that my mom, Suna, has Alzheimer’s disease. Hearing the official diagnosis was devastating. But just as painful for me was the realization that the signs were there all along. I had just been overlooking them.

His tweet caught my attention because I believe his experience is very common – and with good reason. My mom also had dementia, but I have no idea how long she had experienced the early signs. She and my dad lived in South Florida while Kate and I lived here in Knoxville. They made their decision to move here in 1993. At the time I knew they were experiencing aging issues common to people who are eighty, but it never crossed my mind to suspect that she might have dementia. I don’t even recall the time that I recognized it for myself. I know it was earlier than 1998 when her doctor’s social worker gave us the results of her routine memory test. She was very careful in the way she told my dad and me. She didn’t want to shock us. She needn’t have worried. We were not surprised and told her we were aware of the problem.

She died in November 2002, just four years after the diagnosis. Looking back, and given what I know now, I believe she was at Stage 7 of the 7-stage model of the progression of Alzheimer’s at least a year or two before her death. I am sure that Dad must have known the problem before their decision to leave Florida even if he didn’t recognize it as dementia. He never said a word to me before the diagnosis and very little afterwards. What I knew came only from my personal observations. I had arranged for their purchase of a condo that was near our home, and was with them a lot. Yet, when the doctor suggested it was time for hospice a few months before her death, I was surprised. How could I have been so blind?

I have a better understanding now that Kate and I have lived with the disease 13 years since we noticed her first signs. I believe there are two interacting reasons. First, it makes a big difference to be with a person for an extended period of time and even better if you live with the person. That is particularly true in the early stages when so much of a person’s behavior is normal. Second, changes are gradual so that it is difficult to recognize them until the behavior becomes obviously abnormal.

I am pretty sure that I missed the early signs of my mother’s dementia because I wasn’t with them very often. They were still in Florida. When they moved here, I wasn’t looking for them and still wasn’t around her enough to see anything but a memory problem. I attributed that to aging. I recall my mom’s saying, “I don’t know what’s wrong with me. I can’t remember anything anymore.” My standard answer, even after the diagnosis, was “Everyone forgets things now and then. That’s especially true as we get older.” Sometime over the two or three years after their move to Knoxville, I could tell that her problem was more serious than simple aging.

Kate recognized her Alzheimer’s symptoms before I did. For several years, she periodically said, “I think I have Alzheimer’s.” I responded the way I had with my mother and suggested it was part of aging. Over time, I began to realize she was right. That was about five or six years after the first signs.

I have heard others say they were as surprised as I when medical authorities suggested hospice for their loved ones. I believe that, too, is also understandable. It is easy to adapt to patterns of behavior, and not be sensitive to the progression of the illness. My mom had been uncommunicative for a period of time before the doctor mentioned hospice, and I didn’t notice any signs of the end. The doctor, a gerontologist, could see what I couldn’t.

I am also reminded of the passing of Kate’s mother. The day before she died neither Kate nor I had any thoughts about her having only a day to live; however, the caregiver on duty that morning told us she had begun the process of dying. By that afternoon, we could see that she was right. She died just after 8:00 the next morning.

I see how Dr. Oz failed to recognize his own mother’s dementia. It’s not that hard to miss unless you are around the person a lot.

I should make one other point. It makes perfectly good sense for people in their seventies or older to think that their memory problems are normal. That is usually correct, but about one in every seven people over the age of seventy has some form of dementia.

I did not sense a great need to get an official diagnosis for Kate. I knew there wasn’t a cure and felt that it would not change anything we were going to do; however, once we had the diagnosis, we became much more intentional in making the most of our time together. I know that has paid off for us. We are still living well almost nine years later.

Just Wondering

Yesterday morning I was happy to see Kate smile when I woke her for lunch. I told her it made my day to see that smile, and she beamed. Then I told her I would like to take her to lunch. As she started to get out of bed, she wanted to do it on her own without any help from me. Once she was on her feet, she had second thoughts. She extended her hand for me to guide her to the bathroom. It was the kind of moment I felt as though she knew my name and our relationship. Then she asked who I was. I gave her my name and said that I was her husband. She didn’t believe I was her husband, and I said, “Well, let’s say we are friends, very good friends.” She liked that. The balance of the day there were moments when I was sure that she knew me as her husband but many when she did not. She responded to me the same way regardless. In addition, she continued her expressions of appreciation for my taking care of her.

As I reflect on the day, I would say it was a very good day. She was just as confused as ever, but she was happy. What’s more I was happy along with her. I know, however, that many people would not understand this. For example, before Kate got up yesterday, I made up a Rotary meeting I had missed two weeks ago. As I watched from my computer, one of the club members gave an update on several older members and noted that one of them was “suffering with Alzheimer’s.” That is a frequently used way to say that  someone is “living with Alzheimer’s” or simply “has Alzheimer’s.” I know the speaker is probably not in touch with how the “Alzheimer’s community” (all people with dementia as well as those who are caregivers or professionals in the field) is beginning to talk about the way we refer to the disease. Many of those with dementia as well as professionals advocate our dropping the word “suffering” when we say that someone has the disease because it can be very misleading.

Speaking for myself, I find “suffering” not to be a good descriptor of Kate’s experience. There is no denying the changes in our lives that I wish hadn’t happened. Most of all I hate those moments of anxiety, fear, or panic that she has sometimes experienced. I feel similarly about all the moments when she recognizes that “something is wrong” with her. I wish she had never had Alzheimer’s, but that is clearly out of my hands.

The only thing that she and I can do is make the best of it, and I believe we have done that. We have kept our focus on what I call our Happy Moments. We take great satisfaction in them and try to put aside the sad ones; therefore, describing our lives as “suffering” doesn’t seem accurate at all. I do, however, wonder about the future. I’m not at all sure exactly what it holds for Kate or how I will respond. I am encouraged by the fact that each of us has been able to adapt thus far. I also know that my father managed well and took care of my mother to the end. He experienced a good bit of stress, but my load is and will continue to be easier than his because I have help and plan to increase it as needed.

Even if this last stage brings with it more sadness than happiness, I believe that saying someone is suffering from Alzheimer’s is not an accurate generalization. I think the emphasis on suffering can be discouraging to those who are recently diagnosed at a time when they need encouragement. The truth is that it is possible for a couple to live happily for years before they encounter the most challenging aspects of the disease. Based on the accounts written by other caregivers, I suspect that some of them may have received the diagnosis late in the disease. That left them with a shorter period of the “almost normal” years. During those years they no doubt realized they were happy but not that they were living happily with Alzheimer’s.

Lest I be guilty of making my own inaccurate generalizations, I should acknowledge that there are a variety of different types of dementia. Each can have different symptoms and time frames. In addition, there are differences from person to person within each type. I suspect suffering with dementia can occur among all types, but I think it is not usually an accurate description of the whole journey for those living with dementia. Furthermore, there are individual differences among caregivers in terms of how we perceive our situations. I admit to being the kind of person who sees the glass as “half-full” rather than “half-empty.”

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.