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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.

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Our Son’s Visit: Day One

Kevin arrived right on time yesterday morning. Kate had gotten up early enough that we were able to make it to Panera for her muffin and still be on time to meet him. We went straight to lunch and then came back to the house for the afternoon. A number of years ago, Kate’s brother, Ken, when through Kate’s father’s photo albums and scanned many of them. I put together three different slide shows from some of those, and the three of us watched them. It was fun to see the pictures of her aunts and uncles when they were the young married part of the family. It also included many photos of Kate and Ken as well as their cousins. We had seen many of these pictures before, but it had been a while. I always enjoy seeing Kate when she is really engaged and obviously deriving so much pleasure.

We went to Antonio’s for dinner. It has been quite a while since we had eaten there. Kevin had expressed an interest in going. We all had a good time, and I had the best Chilean Sea Bass I’ve ever had. We just might have to go again soon.

We’re looking forward to another nice day.

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More Forgetting and Confusion

Our son, Kevin, arrives from Texas today. Since he learned about Kate’s diagnosis, he has visited us two or three times a year. Each time, he comes without his family and stays several days. That has enabled him to devote more time to be with Kate and see for himself how she’s doing. During each of his previous visits, he has felt good about how well she is getting along. He calls frequently, and I have been very open with him and our daughter. He is aware of how much her memory has declined. It is quite possible, however, that he may not observe any radical difference since we were with him and his family in January.

The reality is that she has experienced notable changes since his last visit in Knoxville this past September. I notice differences more than ever. One of those is her frequent asking me for the names of people and places. She seems to be developing a comfort level in expressing her difficulty remembering things. I suspect that she has had this problem for longer than I am aware because previously she didn’t ask for help recalling names. She is obviously working hard to remember them.

She has become very open about not knowing where she is at any given time. Frequently, wants to know what city we are in. Other times, it is the name of one of the restaurants we frequent so often. Several times over the past few days, I have mentioned that “our son will be with us on Saturday.” Each time she has paused a moment and then asked, “What is his name?” Yesterday she asked about his family. She couldn’t remember the names of any of them. I went through the names of each one, but recognized that she won’t remember them.

As I said in a post a few weeks ago, connecting the name with a person is one of the most superficial levels of knowing a person. I am confident that when she sees Kevin today, she will know exactly who he is. I also know that for someone with Alzheimer’s forgetting names is a first step in the process of not remembering the person. That makes me sad. It also makes me wonder when I will discover that she no longer remembers me.

Memory problems are not the only signs of change that I am observing. She also shows more confusion. She has greater difficulty putting her clothes on properly. Very often she puts her clothes on inside out or backwards. When we arrived at Panera yesterday, I noticed that she was wearing shoes that didn’t match. I didn’t say anything to her about it. I didn’t think it was that important. Before we went to dinner, I did mention it. She looked down at her feet. At first, she didn’t notice that she was wearing two different shoes. Then she said, “You’re right.” She went to change shoes. When she returned, she hadn’t changed shoes at all.

As we left the restaurant, I said something about being near our first house in Knoxville and also the house where Ellen had lived before her stroke two and a half years ago. I told her I would drive by both houses. I also said something about how long we had lived here. She then asked me if we were in Fort Worth.  I reminded her that we live in Knoxville.

Months ago I reported that she almost always asked me if she could work in the yard when we came home. That has gone away since she hasn’t been working in the yard. She is doing something similar. She seems to be unsure about doing things that one would not expect to be unsure of. For example, when we came home from lunch yesterday, she pointed to the bathroom off the laundry room. She was asking if she could use the bathroom. When we arrived at the restaurant tonight, she asked if she should take her cup with her. I told her they would have glasses for us. Just before leaving a restaurant the other night, she asked if she should take her glass with her or leave it on the table. Last night at dinner she asked (again with hand signals) if she could drink her Dr. Pepper. All off these things suggest that she is confused as to what is the right thing to do, and she is looking to me for guidance. She is more confused than I had guessed.

Despite that confusion, we ran into three couples from our church at dinner last night. She was able to greet them as easily and naturally as if she didn’t have Alzheimer’s. That seems to be well ingrained in her. I hope that continues for much longer.

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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.

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Sleeping Late Again

In recent weeks I have noted that Kate has been sleeping later that has been her custom for quite a while. In the past few days, however, she has been getting up at what I would consider an ideal time, around 9:00. That gives her what has usually been an adequate amount of sleep, 12-13 hours. It also gives me time to take care of a few things before she is awake.

Just when I thought she might be establishing a new pattern, she changed again. This morning, she was still in bed at 9:15. I checked on her a little later and discovered that she had gotten up from our bed and gone back to sleep in her room. Just before 11:00, I checked once again. She was back in our bed. At 11:25, she had gotten up and was making up the bed. Then she went to take a shower and dress. It was getting close to 1:00 when we got to Panera for lunch. I felt a little pushed because she had an appointment for a facial at 2:00. I tried not to rush her. I must have been successful because she didn’t express any irritation or have a panic attack. A couple of times she did say, “Just a minute” when I checked to see if she were ready.

As a caregiver, I am always trying to determine what, if anything, Kate’s current behavior signals for the future. In this case, I know that people with dementia require more sleep as the disease progresses. Sooner or later, I know that might happen with Kate. Am I seeing the first signs of this change? Is this judge a random shift from her regular sleep habits? Is there something else that I haven’t identified that might be causing the change? At the moment, I would answer “I don’t know” for each question. Because I am seeing so many other signs of change, I suspect this is part of a normal progression, and that will gradually sleep more than she used to. I will be looking closely to see if there is another explanation.

I had already been avoiding any commitments in the morning. Just last week, I changed the location of her next doctor’s appointment to a less convenient office so that she could see him in the afternoon. I will continue to be more rigid about this in the future. It will be easier for both of us.