Care for the Caregiver

In my recent posts, I’ve mentioned a number of reasons Kate and I have been able to live well while “Living with Alzheimer’s.” One that I overlooked is how much support I have received as a caregiver. I find that people are especially sensitive to the load carried by dementia caregivers and their need for help.

Three years after Kate’s diagnosis, I acknowledged her Alzheimer’s publicly. Since then, I’ve received an abundance of support from family, friends, and strangers. Everywhere I go people ask how we are doing and listen with interest as I tell them. Sometimes, people do something special to brighten our/my day. On several occasions when Kate was able to get out, a stranger bought our lunch. One couple (who are far from strangers anymore) buys my lunch almost every time they see me. That’s about twice a month. Only recently, have they let me buy their lunch occasionally. This same couple has given us several books. One contains all of Norman Rockwell’s paintings from the Saturday Evening Post. They have also given Kate several nice pieces of jewelry that the husband had given to his wife over their 61-year marriage.

This past week I received two very special gifts from friends. Coincidentally, each was a night out at a symphony concert. The first was from someone Kate and I have known for about fifty years. Our daughters are “Best Friends Forever.” She has a grandson who plays trumpet with the University Symphony Orchestra, and she invited me to join her and her family for dinner and the Symphony’s final concert of the season last Thursday. They performed Carmina Burana which I had not seen before. I hadn’t left Kate at night for more than two years, but I arranged for a caregiver to stay with her.  It was a great night out with friends, and the performance was outstanding. It was the first time I had attended a live performance in four or five years.

The second gift was this past Saturday night. Kate and I have had season tickets for our local symphony since the mid-eighties. As her Alzheimer’s progressed, we stopped attending but started giving our seats to friends. That was about five years ago. Our neighbor in the apartment next door was aware of my love for our local symphony and that I had once served on their board. Although she has a season subscription of her own, she had offered several times to stay with Kate so that I could go. Each time I declined.

Two months before the symphony’s last concert this past weekend, she once again offered to stay with Kate. This time she was a little more assertive and asked me to pick one of the remaining concerts, and she would stay with Kate. As it turned out, I had already been thinking about attending the final concert of the year. The orchestra was performing Mahler’s Symphony No. 1. It is one of my favorite symphonies. In addition, Kate and I were sponsoring the performance. I really wanted to go, but the caregiver I would like most to have stayed with Kate works for us eight hours a day Monday through Friday. I didn’t want to ask her to pull an extra shift on the weekend. It can be difficult to find help these days, so I was in a quandary about what to do. Our neighbor’s offer was timely, and I accepted it quickly. I’m so glad I did.  It was a wonderful night out. The concert was great, and I got to see quite a few people I hadn’t seen in years.

These two nights out were very special, and I am grateful for the kindness of friends like these and so many others that have helped us live well while “Living with Alzheimer’s.”

Delusions, Paranoia and Other Things

Yesterday, Kate woke up on her own before 10:00. I took her to the bathroom. After that, she wanted to lie down again but didn’t go to sleep. I got her up and dressed in time to have lunch at noon. Prior to that I didn’t observe anything much different from any other day. She wasn’t especially cheerful, but she wasn’t depressed. As on other mornings, she expressed her greatest enthusiasm for the photo of our daughter, the flowers, the backyard, and the photo of our son.

At lunch, everything was going along well. She asked multiple times about the Frank Sinatra mug shot. Then late in the meal she looked at a large poster of a bottle of Cinzano. She had asked about it only two or three times before. When she asked, I explained that it was a brand of Vermouth and often used in Martinis. That led to explaining a Martini. I told her it was gin with a very small amount of Vermouth, sometime so small that one could hardly tell it was there.

That may have sparked something. She said, “Sometimes somebody could try to slip that in your drink.” We went on with our meal. Our server brought her another Dr. Pepper. Kate took a sip and had a look of suspicion on her face. She said, “I think someone in here is trying to get me. I’m not going to drink it.” I asked if she knew who “they” were. She said, “No. I think they’re working with her (our server), but she doesn’t realize it.” In another minute, she showed me a small piece of tomato that was in her orzo. She said, “See.” I said, “Is that something they planted?” She nodded.

She continued to talk about the need to be careful and that they might get me as well. It wasn’t long before our server asked about dessert and mentioned they had pumpkin cheesecake. I discretely let her know that Kate doesn’t like pumpkin. Then I told her that sometimes “we” eat things that “we” didn’t like in the past and to bring us a piece. When she bought it out, she whispered in my ear that she had added extra whipped cream on top because she knew that Kate likes it. As it turned out the problem wasn’t the pumpkin itself. She took one bite and liked it, but she said “they” had gotten the cheesecake as well as the Dr. Pepper. She took one other bite, but I ate the rest.

I know that paranoia is one of the common symptoms of Alzheimer’s, but this was the first occurrence for Kate. I’ll be interested in whether or not we have a repeat.

The other experience occurred at a local theater. We went to see Into the Woods. We had seen this quite a few years ago on Broadway and were not taken with it; however, I know that it received a lot of awards. That made me think about going. We have a season subscription, so it didn’t cost anything extra. I went prepared to leave at intermission, if necessary.

It turned out that was a good plan. The only thing better would have been to have stayed at home. It was simply too complex for Kate to enjoy. In addition, much of Sondheim’s music is not melodic. She just couldn’t get into it. Throughout the first half she gave me lots of dirty looks as if to say, “You are the one who brought me here. Now get me out.” Several times she gave me an angry look when I applauded.

When intermission came almost ninety minutes later, I said, “Let’s go.” The irony for me is that I thought the musical itself was very creative and well-done. In fact, it was the best cast I have seen at this particular theater, and we have attended off and on for thirty-five years. The quality of the singers was excellent. When I said that to Kate as we walked to the car, she agreed the cast was great. It was interesting that her displeasure did not affect her evaluation of the production itself.

We didn’t talk much on the way home. I decided it was a good time to play music that I know Kate likes. I learned a lesson today. We have always been willing to take a chance on theater productions. Most of the time, we are glad we went. At this stage of Kate’s Alzheimer’s, however, I need to be more careful in what I choose to see.

We relaxed at home for an hour before going to dinner. I played a Barbra Streisand album that she likes while she rested on the sofa. Our son called during that time, and she enjoyed his call. She spoke a little more than usual and gave him a sincere thank you for calling.

After Kevin’s call, we went to dinner and then back home to watch a portion of Fiddler on the Roof. We had watched about an hour the previous night. Last night she just couldn’t get into it and wanted to go to bed.

At 2:00 this morning, I felt Kate move. She was sitting up on her elbows. I asked if she needed to go to the bathroom. She said, “No. Where are they?” I said, “What do you mean?” She said, “My notes. I can’t find them.” At this point, I knew she must have been dreaming. She started feeling around the bed with her hands. She asked me to turn on a light which I did. Then she got out of bed and looked around the room. When she didn’t find them, she looked in the bathroom. Of course, she didn’t find them, but she did bring back two photos she likes. One was our daughter in her wedding gown. The other was a photo of my mother and me on Mother’s Day two years before she died. She put them on her bedside table.

I thought she was going to spend a good bit of time looking around. It was only after telling her several times that I thought she should get back in bed and wait until morning to look any further. All this took about fifteen minutes. When she got back in bed, she couldn’t get the notes off her mind. She kept talking about trying to find them. I promised her I would help her search this morning. We must have been awake another thirty minutes before dozing off. I am counting on her not remembering any of this when she gets up.

Our Sunday

Kate surprised me again yesterday when she woke up early. I assumed she wanted to go to the bathroom and then return to bed. The first part was right, but she wanted to get dressed and “get out of here.” I suspect I have mentioned this before in passing. It is not unusual for her to think she is someplace other than home when she wakes up. That much is pretty normal, but her mood about being elsewhere isn’t always the same. Sometimes she is just curious to know where she is and asks. Once in a while, like yesterday, she begins with a negative emotion about where she thinks she is. Nothing she has said or done has given me an idea of how this originates. I suspect it may be from a dream she has had. Another possibility is that she has been awake, looked around and tried to figure out where she is. When she can’t, she is either frightened or angry and wants to get out. As we walked to the bathroom, she said, “Why am I here?” I explained that this was our house, and we were in our bedroom. She gave me a look of mild surprise. She couldn’t quite believe it.

Although she wasn’t in a good mood, she seemed to relate to me quite naturally. I got her to the bathroom and dressed much more quickly than usual. That must have related to her desire to get out of the house. I was happy that I hadn’t had to wake her and that we would have time for a trip to Panera. Leaving our bedroom, I walked her through the hallway and showed her the family pictures we had looked at the day before. I don’t know if she realized she was at home, but she seemed like she did when we left the house. We spent an hour at Panera before leaving for lunch.

She was quite cheerful and sang a little with the music as we drove to the restaurant. Andriana’s opened at 11:30. We arrived at 11:35. There was only one other person there when we walked in the door. That proved to be a good thing since it gave us more time to talk with our server. It made for a nice social encounter. This is the server who has observed more of Kate’s symptoms than other servers. Not surprisingly, the poster of a mugshot of Frank Sinatra leads to some of it. Kate had asked me two or three times who he was. A moment after the last time, our server approached the table, Kate pointed to the poster and said, “Who is he?” When the server told her, Kate said, “That’s what Richard says.” It’s interesting how she remembered that but not Sinatra’s name until the server told her. This is not unusual. She often says, “I know I’ve asked you before, but who is he?” Sometimes she says, “I don’t know why I can’t remember his name. Who is he?”

We attended a local theater production of Matilda in the afternoon. Our last theater experience in the spring had not been the best, but I thought all the children in the cast would draw her interest. I was right. We had seen the show on Broadway four years ago with our daughter and son and three of their children. Everyone liked it, and the children in the show were of the caliber you would expect on Broadway. I wondered how our local talent would compare. I was glad to see that they did very well. That may have made more of a difference to me than to Kate. I think she would have enjoyed it as much even if they hadn’t been that good.

When planning activities like this, I place primary importance on how well I think Kate will enjoy the performance (movie, zoo, museum, social occasions), but there are also other things I need to consider. At this time of the year, the heat is especially important. Kate is sensitive to lots of things. Heat is at the top of the list. She complains a lot when we are outside during the day. I would definitely not think of going to the zoo in summer.

That also raises another issue – how far we have to walk from the car and back again. Walking is becoming more difficult for her, and she is very slow. Her slowness is relevant in other ways. Going up and down steps or in and out of entrances to buildings, I am sure others behind her can get a little impatient although I’ve never seen anyone react that way. Fortunately, there is a back door to the theater. I hadn’t realized it was available for anyone who needs it, but a volunteer at the door could see how slowly Kate was walking and invited us to enter. That saved a lot of steps for her. It turned out our seats were fifteen feet away from the door.

I had selected two seats next to the aisle. Kate needed my help getting into her seat. When she sat, she let out a loud noise. This is something that is becoming more common. It’s hard to describe, but it sounds a little like “Oh” as she releases air from lungs for a couple of seconds. A family of four came in shortly after we were seated. It took a while for me to get Kate out of her seat and explain where she should move so that the family could take their seats. She wanted something to drink, and we went to the lobby at intermission. When we got back to our seats, the family next to us had not returned. I suggested we stand in the aisle and wait for them. Kate kept wanting to take our seats. We sat down. That was just as difficult this time as before. A few minutes later, the family returned, and we had to get up again. This meant another challenge for Kate to get up and the sit down again. Increasingly, I am learning what so many other people already know – that lots of little things are more difficult if one has physical problems to deal with. As I look ahead, I need to pay more attention to accessibility. That is becoming just as important as the event or occasion itself.

The good news is that she liked Matilda. We also had a good evening at home after dinner. We went through Kate’s memory book together. I read everything to her. She can only get snatches of the text if she tries to read for herself. We also went through half of one of her photo books before she was tired. We went to the bedroom where I played a series of opera arias on YouTube to end the day. It is clear that we still enjoy ourselves, but it is equally clear that life is becoming more challenging for both of us.

Another Day of “Happy-Sad” Moments

For the second day in a row, Kate got up early. I was especially glad because she had a 10:30 appointment with her ophthalmologist. It was her final follow-up visit after her cataract surgery. I planned to wake her about 9:00. I knew even that might cause her to rush. I also assumed we wouldn’t have time to get her a muffin before the appointment. It turned out we didn’t need to rush at all. She got up at 8:00. That enabled us to stop by Panera for her muffin and work a few jigsaw puzzles before hand. We were early enough to see several people in the Catholic group that comes regularly after morning mass. It has been several months since we have seen the Baptists who have Bible study on Tuesdays from 9:30 to 10:30. I have heard indirectly that they have been asking about us.

The good news about the doctor’s appointment is that she said Kate’s eye had healed nicely. She also removed a stitch she had put in to protect the implant if Kate had forgotten she wasn’t supposed to rub her eye. That turned out to be a good plan. Testing her eyesight is almost impossible. Although she tested at 20/50 a month ago, she didn’t do as well two weeks ago. Yesterday was even worse. It is hard for her to know how to follow instructions and where to focus. They finally took her to another room where they were able to test her through digital technology.

Yesterday afternoon, we drove to North Carolina, to attend a show at the Flatrock Playhouse. On the way, Kate repeatedly asked where we were and where we were going. At this stage of her Alzheimer’s, it is simply impossible for her to remember things like this. Her brain won’t “allow” it. We also had one of those conversations in which we talk about about our marriage, our families, and the many experiences we have had followed by her asking my name and her name. As usual, she asked without any sense of frustration or concern. She just wanted to know. I never mind her asking. It’s those times she is troubled by not knowing that bother me. We had one of those later in the evening.

We made this trip at the invitation of a couple we know from Casa Bella. We have attended one other show at the Playhouse with them in the fall. Kate, of course, never remembers them, but she enjoys being with them. They are friendly people, and she feels comfortable with them. Last night’s performance was the comedienne Jeanne Robertson. This was the first time time in our marriage that we had attended a performance by a comic other than as part of a variety show on a cruise. Kate doesn’t generally take to comedians, and I was worried that she wouldn’t enjoy her. Before accepting the invitation I looked at a couple of YouTube segments of some of her other shows and decided it was worth a chance. I’m glad I did. Kate thoroughly enjoyed it. I am sure she didn’t understand much of it, but a good comedian is successful for much more than the exact words. She enjoyed it so much that I was a bit surprised when we saw Robertson in the lobby talking with others who had attended, and Kate had no idea who she was. That was true even after I explained that she was the one we had seen on stage in the auditorium.

As we walked to dinner and from dinner to the Playhouse, Kate whispered to me, “Where are we?” She repeated her question a number of times as well as when we went to our hotel for the night. When we got to our room, she said, “I sure am glad I’m with you. I have no idea where I am.” That was the beginning of a lengthy conversation that continued off and on for about an hour. She said, “I want you to know how much I appreciate what you do for me.” I told her that everything I do for her is because I love her. She was a bit teary but never broke into a full cry.

During the early part of the conversation, it sounded like she understood that she has Alzheimer’s. She said things like, “You’re the only one who knows what I am going through, and I even have trouble remembering your name. I do sometimes, but . . .” As she talked a little more, I learned that she was disturbed because she has lost “so many of my family.” She was worried that she had not done enough for them. I tried to encourage her. I reminded her of the way she had cared for her mother and how good we both felt about having her in our home the last years of her life.

On this particular trip she seemed to be less at ease in a strange place than at any other time. I’ve been looking for this on our previous trips but haven’t observed it. I’m not even sure about this one, but a few times she said, “I’ll be glad when we get home.” One of the reasons it is hard to determine if it is uneasiness about being in a strange place is that she sometime says the same thing when we are at home. In those cases, I don’t know if she thinks we are in Texas and wants to go to Knoxville or if she understands we are in Knoxville and wants to go home to Texas.

When I got ready to shower, she asked if it would be all right if she worked on her iPad. I told her that would be fine. She said, “Are you sure?” I told her this was a time she could relax and do whatever she wanted. I reminded her that we had no commitments in the morning, and she could sleep as late as she wanted.

It wasn’t until we turned out the lights and were in bed that she said, “Thank you. I’m beginning to relax now.” She continued to talk for a while. Then she drifted off to sleep. She slept until 5:00 this morning when she got up to go to the bathroom. When she got back in bed, she wanted to know “Where are we?” I told her, but she asked several more times. It took her a good while to get back to sleep. It is now 9:45. She is still sleeping soundly. If she doesn’t wake before, I will get her up around 11:00 so that we can get home early in the afternoon.

Considering everything, it was a very good day. She was in a good humor and enjoyed herself. She seems comfortable with the friends who invited us and loved the show last night. What more could I ask this long after her diagnosis? We continue to have good times. How fortunate we are.


We had another good day yesterday. It was a good example of how little time we spend at home on a typical day. Kate slept a little later, but we made it to Panera for almost an hour before going to lunch. After that, we came back home. That left us about two hours before our hair appointments at 3:00. Knowing that Kate doesn’t like to stay at home for long, I gave her an option to go to Barnes & Noble. She opted to stay at home.

About an hour and fifteen minutes later, she got up and went to the bathroom. When she returned, she was ready to go. It was 2:30, so I asked if she would like to go for our haircuts then or wait another fifteen minutes at home. She wanted to go the hair salon. That’s what we did. As it turned out that worked well. The person who cuts our hair did not have a 2:30 appointment and took her right in. It was a day for color, so I had time to run back home for a while before returning an hour later for my haircut.

By then it was 4:00. That left us time before we were to leave for jazz night at Casa Bella. I asked if she would like to go home or to Panera. She wanted to go to Panera. I have often commented about the importance of Panera and other restaurants to both of us. It puts us in centers of activity. We often see people we know and engage in brief conversations. In addition, we meet new people who also come regularly.

Although Kate obviously enjoys being at Panera, I have never heard her make a comment about it until yesterday. She loves children and had been watching a young child in his mother’s arms as she got herself a drink. Then she said, “Panera’s a nice place to be.” She went on to say something about the surroundings and the people that we see. When she says things like this, I am reminded of how much she takes in. It’s a happy moment for me. It also makes me think. I’m afraid I sometimes underestimate her. I know it is common for other people to underestimate what people with dementia can understand. We are easily drawn in that direction, even caregivers who should know better.

We left Panera in time to change clothes before going to Casa Bella. When Kate was ready, she was carrying a turtleneck sweater and pair of pants that go with an old warm-up suit I used to wear to the Y in the morning. I didn’t say a word. She brought them to the car but didn’t take them into the restaurant. I would have said something if she had started to do that.

It was another beautiful evening of music and socializing. We sat with one couple we sit with every time we go for one of their musical evenings. That’s three times a month. The other couple has joined us several times in the past few months. They are all interesting people, and we get along well. Kate doesn’t talk much but enjoys being with the group, and she loves the music. It was a terrific way to end the day.

Music Speaks Again

As expected, opera night at Casa Bella was outstanding. The two singers were unusually good. I don’t mean to take away from the singers we normally have. They are graduate students from the music school at UT. Last night, the soprano and the baritone have sung with opera companies in Europe. As you might expect, they were truly outstanding. The crowd, including Kate and me, loved them.

It had been three weeks since we had been together with the couple we sit with regularly. It was good to see them. Two other people sat with us. We had known each of them from other places around town, so it was also a nice social occasion as well. We also saw several other people we know from other musical circles.

Once again, the power of music spoke loudly. With all the changes that Kate is experiencing lately, music still has great impact. I am optimistic that it will be with us for a good while to come.

Another Musical Highlight

As Kate continues to decline, it makes me happy when I see her enjoy life. Nothing else has the impact of musical performances. What makes it even more special is that we share this pleasure together. This week we have had four evenings of musical entertainment at home. I purchased two DVDs that arrived on Monday. One was Fiddler on the Roof. The other was Les Miserables. We watched Fiddler on Monday and Tuesday night. We watched Les Mis on Wednesday and Friday night. I can’t remember a time when she has been so demonstrative in her expressions of pleasure. There were moments in each musical that made her a bit teary.

I should add that it’s not just the music itself that moves us. We both enjoy the visual aspects of productions, the staging, the lighting, and, especially, watching outstanding actors giving their all. The video of Les Mis is not the theater production. It was the 25th anniversary concert at the Barbican Centre in London. They pulled out all the stops for this one. They brought back former actors for each of the major roles who joined in rousing performances of some of the signature music. This is our favorite musical, and this production was spectacular. I would have loved it had I been alone, but to share this moment with Kate at this point in in her Alzheimer’s was something to treasure.

Still Enjoying Musical Theater

Kate’s memory continues to disappear, but we are still enjoying some of the things that have been important to us throughout our marriage. One of those is attending live performances. Her enthusiasm for some things has lessened during the time we have lived with Alzheimer’s, but we both get a boost when we attend most musical events.

This past Sunday afternoon we attended Hairspray at one of our local theaters. We had originally seen it on Broadway and liked it. That made me wonder if we would feel the same about a local production. I had no need to worry. It was outstanding. Each time we attend an event like this, I also wonder how Kate will enjoy it. At some point, I know she won’t. We haven’t reached that point yet. I hope it is a long way off.

By chance, we sat next to a couple that we see at three different restaurants we frequent. We arrived early enough to get a little better acquainted with them. What began as a musical experience also became a social occasion. It was a banner day for us. Experiences like this go a long way in helping us to maintain a positive outlook about life.

Live Performances and Social Occasions

As noted in my previous post, we were at Casa Bella for Opera Thursday the other night. Once again, we had a great evening. The program and the singers were especially especially talented. For me, the most important thing is that Kate thoroughly enjoyed it. I haven’t seen any signs that her love for live performances has lessened in the least. On the contrary, it seems to be one of the highlights of her life.

It was a good social occasion as well. By now, our connections with others who are in attendance as well as the servers and, especially, the couple with whom we share a table each time make for a good evening. Kate is not talkative at occasions like this. I think it can be challenging for her because of the number of people who are talking. Sometimes it calls for a little patience as well as assertiveness. The other night, for the first time, she became frustrated and displayed it.

Like most of those in attendance, Kate and I arrive about an hour before the musical program begins. That gives us time to have our meal and enjoy greeting others as they arrive. One of the other guests came to our table to speak to the couple we sit with. We got into a conversation about someone else who has just had heart surgery. When he walked away, the man and woman with whom we sit continued to talk about the man who had had surgery. Kate couldn’t understand what we were talking about but must have recognized it was serious. She tried to get us to explain, but the man and the woman at our table were both talking simultaneously. It really was hard to focus on just one. Kate shouted, “What’s going on. I don’t know what you’re talking about.” With all the conversation going on at other tables, no one else is likely to have heard her, just the couple we sit with. They couldn’t have missed it.

This is only third time that I can recall her doing anything like this. The two other occasions were with good friends and occurred about two or three years ago. In each case, our friends thought her response was more shocking than I did. They were both correct that her behavior was out of character for her. I would say her response at Casa Bella was stronger than the other two times. In this case, I think it arose because of the level of frustration she experienced when she couldn’t understand what we were talking about. I’m sure she could tell it was something serious and may have felt shut out of the conversation. The good thing is that after her remark, she was just fine, and we continued to enjoy the evening as though nothing had happened. Like so many other things, it does make me wonder if I am going to see more of this kind of reaction in the future.

A Little Irish Music

Last night we went to Casa Bella for Broadway Night. Since tomorrow is St. Patrick’s Day, the program featured Irish Music rather than Broadway. I went not knowing exactly what to expect and how much of the music I would recognize. I was surprised to discover that I recognized all but two of the songs. They were almost all Irish ballads that were familiar to those in the audience who are our age. That was the majority. They opened with “Peg ‘O My Heart,” following by “Danny Boy,” “How Are Things in Glocca Morra,” and “When Irish Eyes are Smiling.”

Once again, the singers were very good. We enjoyed all the music as well as the people with whom we sit. These musical nights have become very important for both Kate and me. I don’t yet see any signs they are becoming any less so. That was a great way to close our day.