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Reflecting on Changes in Our Lives

I have repeatedly commented how fortunate Kate and I have been as we have been learning to live with Alzheimer’s, and that is true. We have been free of any other major health concerns. We have traveled. We visit with friends. We attend many live theater productions as well as a variety of musical events.  We are active and enjoying ourselves. That doesn’t mean, however, that life is the same as it was before Kate’s Alzheimer’s. In an earlier post, I described how much life has changed for Kate. Except for the things I arrange for her, she only works on her iPad and sometimes works in the yard. Let me take a moment to comment on the changes I have experienced.

At the time of Kate’s diagnosis, I was still working and also served as a volunteer with several organizations like our local United Way, our church, and the foundation board of our largest hospital system. Kate’s Alzheimer’s led to my retiring earlier than I would have. My term on the foundation board expired. I dropped one of the United Way committees on which I served. I gave up my Sunday school class and all but one church committee. We were regulars at church for many years. We are much less frequent attenders now. That relates to how slowly Kate likes to get going in the morning. For a short time, I signed us up to participate in the Shepherd’s Center’s programs. Kate enjoyed some of the classes, but I have found the mornings are not a good time to rush. It is much better to let her sleep as long as she wants, take as long as she needs to get dressed, and to spend time relaxing and enjoying her blueberry muffin at Panera.

I changed my exercise schedule at the Y from early in the morning to early afternoon. I have assumed almost all of the household responsibilities but should acknowledge that we have a housekeeper who comes to our house once a week, so not everything is on my shoulders.

Travel, especially international trips, had been a significant part of our lives. Our last big trip was to Switzerland in May 2015. Our two favorite places in the U.S. have been Chautauqua, NY and New York City. Our last trip to New York was in June 2015 with our daughter and son and three of their boys. We continued to attend Chautauqua through last summer, our thirteenth time there. For the first time in quite a while, we will not be there this summer and never again together.

There are a variety of evening activities in which we participated as couples but were primarily for my enjoyment. These include the symphony concerts and meetings of our music club, and a small group of people with a special interest in the symphony who get together with the conductor during the week prior to each concert. We’ve given up all evening events except the music nights at Casa Bella. We are able to attend those because they begin at 6:00 and end before 8:30. Periodically, we are invited to something at night, and I decline. Both of us enjoyed attending movies, but Kate’s interest has all but disappeared.

The good thing is that we are out and about a good portion of every day. That consists largely of a portion of the morning at Panera, lunch, some time at Barnes & Noble or another visit to Panera, and dinner. The most positive aspect of this schedule is that we have a good bit of social interaction throughout the day. Even when we are not in conversation, Kate often sees children being children. She loves watching them. Thus, we have changed our routine a good bit since her diagnosis, but we are still able to be socially engaged, just in a different way than before. We still enjoy doing things together. That’s hard to beat right now, but I know the most difficult part is on the way. We are approaching it little by little.

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A Small Thing, But Another Marker on our Journey

Several years ago, I bought a white board for Kate. I put it on the island in our kitchen where she would see it each day. Each morning, I wrote the day of the week, the date, and a list of things on our schedule for that day. Over the past year, I gave up writing the schedule because Kate was not reading it; however, I have been dutifully writing the day of the week and the date each morning when I went to the kitchen for my breakfast. For at least six months, It looked like Kate did not pay attention to it, but I kept it up. Today I finally broke down and put the white board away. At this point, she seems to have little interest in this information. In case I am wrong, I bought a large digital clock that gives the time, day, and date. At least I won’t have to erase the old and write the new information each day. It will also be easier to read.

I’ve noticed a couple of other new things. One is that she is beginning to dislike whatever drink she gets, even her Dr. Pepper. For a several months, she has been mixing a little of each of the non-soft drink items (at least two types of lemonade, sweet and unsweetened tea, and two flavored teas) and being unhappy with them. She has started asking me to refill her cup. I have been getting her either an Arnold Palmer or a half and half mixture of sweet and unsweetened tea. She hasn’t like those either. In two different restaurants today, she didn’t drink her Dr. Pepper because it didn’t taste right to her. I tasted it. It tasted the way it usually does.

Tonight she worked a few minutes to figure out how to put on her robe. She finally gave up and asked me to do it for her. This is one of those occasions when she was happy to have me do something for her.

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And More Signs

Tonight at dinner Kate pointed her finger at her iced tea and then at herself. I recognized this hand signal as one that asked if she could drink her tea. I said yes, and she did.

At almost 9:25 this evening, I told her the time and suggested that she might want to get to bed. In a few minutes, she asked, “What do I do now?” I told her it would be a good time to put on her night clothes. She looked over to her chair beside the bed and said, “There’s my robe.” She walked over to get it. She held it up. With hand signals, she asked if she should put it on. I told her yes.

These are just two more little things, but they fit a growing pattern of dependence on me to tell her what to do. It makes me sad.

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More Signs of Dependence

Kate and I returned from lunch about thirty minutes ago. I pulled into the garage. As I got out, I noticed that she was still seated and had her seat belt on. I looked at her. She pointed her finger at the passenger door and had a look that told me she was asking if she should get out. I nodded yes. As she got out, I said, “I guess I wasn’t too clear.” She gave me a look that said, “What else is new?” I don’t recall any other time that she has waited for me to tell her she could get out of the car.

Once inside, I said, “I’ll bet you’re eager to get your teeth brushed.” That’s usually the first thing she does when we return from eating. She nodded her agreement. Then she asked, “Middle?” I knew that she was asking whether to use our bathroom or the one off the middle bedroom. I told her she could choose any one she wanted. She looked uncertain, and I said, “How about our bedroom?” Off she went.

We are now in our family where we are listening to Rachmaninov’s Piano Concerto No. 3. Kate had been working jigsaw puzzles on her iPad but is now resting on the sofa across from me. It’s a beautiful day in Knoxville. The sun is shining brightly though it is a bit chilly. We’re sharing a very peaceful moment. I plan to let her rest as long as she cares to do. Then we will probably make our way to Barnes & Noble for the balance of the day. After that, it will be time for dinner.

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A Review of Blue Hydrangeas: An Alzheimer’s Love Story by Marianne Sciucco

Blue Hydrandeas is a novel, but I wouldn’t call it fiction. Yes, Sciucco has created the characters in her book; but the events she portrays are very real. I don’t mean that every Alzheimer’s family experiences the same things that Sara and Jack and their family have encountered; however, any family with a loved one diagnosed with dementia will easily recognize the issues they face.

The story introduces us to a loving couple who run a B&B in “a picturesque Cape Cod village on the edge of Nantucket Sound.” Sara is a painter who loves the Blue Hydrangeas of that part of the country. Jack has retired from a successful business career. All is well until Sara begins to show signs of Alzheimer’s. In the balance of the book, Sciucco relates the many challenges faced by the couple as Jack struggles to maintain life as it once was.

For me there are several things about the book that make it worth reading. First, Sciucco realistically captures so many of the behaviors associated with Alzheimer’s and caregiving. Her background as a writer and a nurse have come together to bring out a real sense of what it is like to live with Alzheimer’s. That includes not just the symptoms of the disease and the response of the caregiver, but also the way in which a caregiver’s thought process works or fails to work.

That leads to my second point. The story brings out an important message for all caregivers. Caring for a person with dementia requires a delicate balance between what I call “head” and “heart issues. Jack’s heart is in the right place. He loves Sara deeply. He wants to do what is right for her as well as for them as a couple. His heart overshadows his head until he finds himself in trouble. Fortunately, there is a happy ending.

A few weeks ago, I saw something about the need for a caregiver to have a team to help with this journey. It can be too stressful to do it all alone. Jack had a team of doctors, family, and friends who could help him, but he had difficulty making the best use of them. I think there are many people just like Jack. All of us can take a lesson from his experience. We need a team, and we need to listen to them carefully as we make what we hope are the best decisions.

Finally, despite Jack’s struggles, this is a heartwarming story. As the book’s title tells us, it is “An Alzheimer’s Love Story” from beginning to end. If you are a caregiver of someone with dementia, you might benefit from reading their story as much as I did.

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Growing Dependence

When we returned home from dinner last night, Kate walked into the family room and turned back to me with a look that I interpreted (correctly, as it turns out) to mean “What do I do now?” Or “What now?” I told her it was time for us to relax and wind down for the day. I added that I would turn on the news, and she could work on her iPad. She went to the back of the house while I took care of a few things in the kitchen. In a minute, she appeared in the kitchen. She still had her coat on. Her hands were in her coat pockets as if she were ready to go out. She didn’t say a word. She just looked at me. I gave her a moment to say something. When she didn’t speak, I told her again that I would watch the news while she worked on her iPad. She turned around and went to our bedroom. I followed her a few minutes later. She was seated in her chair with her iPad as I had suggested. She just forgot the first time I told her. This is becoming so commonplace that it is surprising that she remembered the second time. This often leads to problems coordinating almost everything we do.

Simultaneously, however, she is looking to me for guidance as to what she should do. This growing dependency is evident in her looking to me to tell her what to do when we got home. She wants to do the “right” thing. She just can’t remember what the right thing is or what I have just told her to do. This compliant behavior is easier to deal with than obstinance, but it leads to a sadder feeling on my part. To me this is the most challenging part of being her caregiver. It really bothers me to see her becoming so dependent.

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How quickly the memory fades.

We’re in Barnes & Noble right now. We came here after dropping off Kevin at the airport for his flight back home. A couple of minutes ago, we looked across the table at each other. She pointed to her iPad. The expression on her face signaled a question. At first, I couldn’t figure out what she wanted. Then I realized that she was asking if she could work another puzzle. I told her that would be fine. I wonder why she asked after she had been working them for a full hour or more? One more mystery.

As she went back to her iPad, I said, “I’ll bet Kevin is in the Atlanta airport right now.” She said, “Where?” I repeated myself and then said, “He is changing planes to catch a flight to Lubbock.” Then she said, “Who are his parents?” I said, “You and I.” Then she said, “What’s his name again?” I said, “Kevin.”

In a few minutes, I received a text from Kevin saying he was at the gate for his flight to Lubbock. When I told Kate, she asked, “Where is he going?” I said, “To Lubbock.” She said, “For a job?” I said, “No, he is going home. That’s where he lives.” She answered, “Where has he been?” I said, “Here.” She said, “Oh, that’s right.”

It always seems strange to observe how well she functions in many ways and then how quickly she can say or do something so revealing of her Alzheimer’s. I think of the connections in her brain like an electrical wire that is partially broken but hanging by a thread. Sometimes the electricity flows through despite the break. Other times it doesn’t. It’s hard to predict when each will happen.

As I was writing, she said something. I thought she was ready to go, but she was trying to solve a problem with her puzzle. I asked if I could help her and fully expected her to say yes. She surprised my by saying, “I got it.” Despite her growing dependence, perhaps because of it, she still works hard to do some things on her own.

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Kevin’s Visit: Day 4

Kate and I have enjoyed each day Kevin has been with us. Yesterday was an especially good day. It is interesting that music played a role in making this a day to remember, but it wasn’t just any music. It was music played by Kevin and his former piano teacher, Marian Covington. On two of his previous visits, we have paid a visit to see her. She will be 90 in June and still plays beautifully. She made her debut in Carnegie Hall when she was around 19 and has spent her entire adult life teaching piano. She has always been especially fond of Kevin who was one of her star pupils for many years.

During his college days at TCU, he focused more on the organ than piano and has served as organist and interim organist at several churches over the years. With the growth of his family and his involvement with his career, he has played much less. Marian has encouraged him to practice so that they he might play for her on another visit. This time he had worked on Debussy’s “Clair de Lune.” He played it for her and then invited her to play it. She took the opportunity to give him another piano lesson.

The music they played was beautiful. Kate loved it. So did I, and we were both touched to watch the two of them talk about the pieces. They were two people sharing a common bond with the music of the piano. Kate kept commenting on the way in which Marian spoke to Kevin. It wasn’t just that of a teacher speaking to a student. It was more like one colleague discussing music with another colleague. Another comparison would be that of a private master class with a mentor and her protégé. Kate was so proud of Kevin and the way he has grown. As I sometimes say, Kate is not moved by as many things these days. When something like this happens, I am moved to see her so engaged. It was a wonderful afternoon.

Though clearly the highlight of our day, there were other good experiences. We had lunch at our church with the seniors group. Today, a retired rabbi spoke to us about Jerusalem focusing on archeological findings. We had met him some years before at the home of our friends, Ellen and Gordon Seacrest. We had a good conversation with him before his presentation. Coincidentally, we also saw him at dinner this evening and got to see his wife.

Kate handled herself well again with this group. In particular, she participated actively in our conversation with the rabbi and with a former Methodist minister who are friends of ours. She was just as natural as she could be. No one who didn’t already know about her diagnosis would have ever guessed.

This visit Kevin has been able to observe some of Kate’s symptoms that I have told him about. That includes his missing clothes as well as a number of other little things. He also saw her express some irritation with me and her growing openness about not remembering things. As we left a conversation with our friend, the former Methodist minister, she said with a little frustration, “I don’t know why I can’t remember his name.” I sloughed it off in the same way that many others do. I said, “Remembering names can be hard. Everyone has trouble.” At this point, I don’t see any good reason to remind her that she has Alzheimer’s and that it will only get worse.” At dinner, she asked me to stop talking and give her a simple explanation of something I was telling her. Just as important, he has been able to see how well she can function despite the many symptoms of her disease.

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Kevin’s Visit: Day Three

As they have done on previous visits, Kate and Kevin went to lunch on their own while I went to Rotary. Kevin initiated these lunches several years ago with the thought that it would give him a greater opportunity for him to focus on her. Of course, this has also been special for Kate since she is often quieter when I am present.

We met at my office after our respective lunches and visited with the staff for about an hour. Kevin worked at the office when he was in high school, so his connection goes back a good way. I think we all enjoyed catching up on what’s going on in our lives. It was another good social experience. Kate enjoyed herself, and, as she usually does, handled the social interaction quite well.
When we returned home, we looked at several other slide shows of family photos. It was good to see her deriving so much pleasure.

Earlier in the day, Kevin got to experience one of the things that has become a common part of my life. He went back to his room and discovered that his clothes were missing. Simultaneously, I had taken some of Kate’s clothes to hang in her closet. When I did, I found some clothes on her bed. When I looked more closely, I found they were Kevin’s. I gave them to him. Then I went back to Kate’s room where I found the rest of his clothes. Of course, we never said anything to Kate. That makes no sense. That would have only made her feel bad for mistaking his clothes for her own.

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Kevin’s Visit: Day Two

We had another nice day. Once again, Kate got up sufficiently early that I did not have to wake her. That left us with the right amount of time for her to get ready without rushing her. I reminded her that Kevin was here and that we were going to church. I had looked through her clothes before she got up an picked out a couple of things. When I showed her one of the tops and asked how she like that, she said, “Why don’t you just let me pick out something?” I agreed. In a few minutes, I selected one of two tops that I thought would work. I had already taken a nice pair of pants that I keep in my closet and put them on the bed. She had them on when she suggested that I let her pick out something.

When she came out of her room, she was wearing a top that was best for everyday wear, not for church. I reminded her that we were going to church and then gave her the top I had selected. She accepted my choice, and we were off to Panera.

When we arrived, there was an unusually large group from a Catholic Church who often go out for coffee after morning mass. We have become acquainted with about 8-10 of them. I introduced Kevin who had met some of them on a previous visit. Kate was especially talkative and continued her conversation with several of them while Kevin and I were talking to another member of the group.

We had almost an hour before we needed to be at church, so Kate had plenty of time to finish her muffin before we left. In fact, we arrived a little early. That gave us time to visit with friends before the service.

We had a nice lunch and then went to one of our local theater for their last performance of a farcical play in which a group of actors meet for a weekend at the home of the lead actor. It was not a great play, but we enjoyed it.

After the play we closed out the day with dinner with a church friend who had been a volunteer for the youth program when Kevin was in high school. We had a great evening of conversation. It was a perfect end to another nice day.