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What makes a day “good”?

Yesterday, I saw a tweet by someone who produces podcasts on dementia. She mentioned that she had interviewed someone with dementia in one of her early programs, and she was still doing “pretty well” a year later. That made me think about the way Kate is doing and my reports of “good” days. It’s hard for someone to understand what that can mean. Was her memory better? Was there less confusion?

If we went from couple to couple, we would probably find differences in what they call a good day. I also think there is some change over time. If yesterday’s experiences had occurred in the early years after Kate’s diagnosis, I would have considered it a bad day. It was another day when she didn’t know who I was when she got up. That never occurred until the past six to eight months. I have come to accept that now. The same thing would have had a dramatic impact on me in the early years.

More than anything else, I consider it a good day when Kate is happy. Yesterday she was very happy. She joked with me a good bit. I regret that I can’t remember all the funny things she said. She was upbeat all day. Nothing seemed to bother her. She wanted to sleep longer when I woke her, but she got up without objecting. We had a little time between lunch and her massage. I showed her the three-ring binder of information about her and her family and about our lives together. She loved looking through it. She wanted to nap about twenty minutes before leaving for her massage. She got right up when I told her it was time to go. After the massage and a hair appointment, we had a short period of time before dinner. She said she was tired and wanted to rest. I asked how she would feel if we went to dinner right then. She said she that would be good, and we were off again. That meant that she didn’t get to rest as much as she would have liked. I thought that was good, especially when she went to bed about forty-five minutes earlier than usual. That should make it easier for her to get up this morning.

I should also say something about her massage since she didn’t have a good experience last time. I think she had forgotten what a massage was like and was surprised and confused by what the therapist was doing to her body. Before yesterday’s massage, I suggested that the therapist approach her as though this were the first one Kate had ever had. I don’t know that that made a difference, but Kate was fine when we left. I suspect that she was in such an upbeat mood that she was able to deal with massage more easily.

You might think by what I have said that she is typically depressed or in a bad mood. That is not so at all. On occasion, she has both experiences, but they are infrequent and short-lived. The difference yesterday was that she was so unflappable and upbeat. I find it uplifting for me when she is that way. So a good day doesn’t mean she doesn’t exhibit the symptoms of Alzheimer’s. Her memory and confusion are not any better, but she goes about her day as though everything is all right. I try to do the same. I think we’re both pretty successful. We focus on what she can do, not what she can’t and feel grateful.

Like other caregivers, my primary goals are (1) to keep her feeling safe and secure and (2) to keep her happy. Yesterday those goals were met. It was another good day.

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A Pleasant Surprise

It’s been six weeks since Kate’s cataract surgery, and I see signs that she can see much better than she did before surgery. That would be no surprise for someone without Alzheimer’s. It is quite different for Kate who does have that disease. It was difficult to get a good test after the surgery, but it appears that from a physical standpoint her eyesight is about 20/50. That is impressive considering that she was legally blind in her left eye before the surgery.

The most striking indication that her vision is better is that she more frequently picks up something to “read.” What I mean is that she looks through periodicals. We no longer have any magazine subscriptions, but we do receive magazines from TCU. We have two on the table beside the chair she uses most frequently when she is in the family room. Since she can’t remember having looked at them before, she picks them up regularly. She doesn’t just look at the front cover. She goes through a good portion of the whole magazine.

Before going to bed last night, she asked me if we had anything she could read. I had to think a minute before remembering a three-ring binder in the family room. I put this together almost a year ago. I was motivated to do this by two things. First, was her brother Ken’s working on the “Big Sister” album of photos for her. Second, she has talked about doing a family album that contains information of our family and the things we have done. Frequently, she says to me, “That’s going into the album.” Or “You’re going to remember this for me, you know.” I created the contents of the binder with some of the kind of information she might like to have, but she hadn’t shown much interest in it.

A brought the binder to her and let her look through it. She was quite taken with it and spent about twenty minutes looking through it before going to bed. During that time, she wanted to show me what was in it and kept asking me if I had seen it. Sometimes she asked for help reading it. I was encouraged that she was able to read enough of it to understand it was personal information about her and her family as well as the two of us. That is a real breakthrough that is a direct result of her surgery.

She couldn’t, however, read it as well as I had hoped. The brain is the control center for everything we do. Alzheimer’s damages the brain in a way affects vision as well as just about everything else. The result is that Kate continues to have trouble seeing. It is very spotty, and I don’t have the scientific expertise to explain it. What I know is that she sees (notices) some people in a photo and not others. She does the same thing with a string of words. For example, last night she saw her grandmother’s name, Mary Katherine Franklin. She only saw “Katherine.” The only way I could get her to see “Mary” was to put my finger under the word.

I don’t expect this to change, but I do believe I can make it easier for her to read the information in the binder by enlarging the font. That would be easy. I may experiment with that today. This should give her another option to occupy herself besides her puzzles that continue to be harder for her to work.

So all-in-all her cataract surgery has been a success. I am glad we did it.

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Kate’s Intuitive Abilities Make for Special Moments

Kate enjoys life. Hardly a day goes by when I am not touched by things that she says or does. They let me know that even without a memory, she is still in touch with life through her intuitive abilities. For example, Sunday morning as we were about to leave for lunch, she saw a coaster on her bedside table. It has a picture of orange flowers on it. We have had this set of coasters for many years. She had put it on her bedside table sometime in the past few days. She had no memory of ever having seen it. She said, “Can I take this with us?” I told her it was hers, and she could take it. She took it with her as we walked through the family room to the kitchen. She stopped to look at it more closely in the light of the family room.

Walking to the car, she held the coaster close to her and said, “I don’t want to lose this.” She continued to admire it on the way to the restaurant. She said, “You’ll have to keep me from losing this.” As we pulled into a parking space, she said she didn’t know where to put it. “If we leave it in the car, you’ll have to help me find a place that nobody will see it.” She didn’t want anyone to take it. Then she decided to take it into the restaurant with her and asked if that would be all right with me. I told her it would, and she walked in with the coaster in her hand.

After we were seated and the server came to our table, Kate showed her the coaster right away. Then she placed it on the table to the left of her plate. When we were ready to leave, she noticed the coaster. She asked me if it was ours or “theirs.” I told her it was hers and that she had brought it from home. She was pleased and enjoyed looking at it all the way home. She even remembered to bring it inside, and we placed it exactly where she found it to start with. By then, she couldn’t remember that, but she was happy.

We have a lot of musical experiences that I find touching as well. Returning from lunch the other day, I turned on an album of songs from a variety of musicals. She likes all of them and started singing along with “Some Enchanted Evening.” I joined in with her. She looked at me and said, “Hey, you can really sing.” (At this point, I need to say that I am not a singer at all. I sang in several choral groups in college, but I don’t have a natural gift for singing and have never had any vocal training at all.) To me this illustrates another of her qualities that I find endearing. She is not a critic. She is impressed with just about everything that other people are able to do. There is a sad side, however. This must arise from her inability to do so many things, but I am touched by her ability to enjoy and respect whatever talent she observes in others. She really enjoyed hearing me sing. (Note: That hasn’t changed her opinion that I am not handsome and have a big nose, but she still thinks I’m a “nice guy.”)

When we got home, “True Love” by Cole Porter in the 50s was playing in the car. I started to turn off the engine when she stopped me. She wanted to hear the rest of he song. We sat there together her hand in mine until the last note when we went inside.

Yesterday she used a cup she has had about a year but never commented on until then. She was delighted by the colors on it.

These are all little things, but it makes me happy to see her enjoying herself. I am hopeful these intuitive abilities will remain with her for some time to come.

Three Hours Later

I was about to finish this post this morning when I received a phone call from my brother. When our conversation ended, it was time for lunch. Kate and I returned home about forty-five minutes ago. That’s when we experienced another special moment. It reminded me of a similar experience this past fall. The difference was that last fall she didn’t recognize our house as our current home. I was never sure, but it appeared that she either thought it was the house in which she had grown up or a previous house in which we had lived. Today she clearly knew it was ours.

It began as we entered the driveway. She commented on the house and said how much she liked it. The spring flowers on trees and shrubs are coming out, and I suggested we take a look at the back yard. We walked around the yard. She was taken with the azaleas and dogwoods.

We came back through the garage where she stopped to look at her collection of Dr. Pepper memorabilia. Once inside she loved looking from our family room through the glass doors to the back hard. As she often does, she commented on what a nice room it is. Then instead of going to the back to brush her teeth, she wanted to go to the living room. That’s when I became something of a tour guide telling her about the various pictures, knick knacks, and furnishings I thought might be of interest to her. I was right. It was really an emotional experience for her. She didn’t recognize her own or our daughter’s wedding portraits or portraits of her mother or grandfather, but she loved hearing about them. She took great pleasure in seeing her mother’s silver service and her grandmother’s china. Of course, there were also things like the fresco over the mantel and our dining room furniture that we had purchased ourselves. She hadn’t remembered any of the things she saw. Seeing things and hearing me tell her the connections to our lives was a special joy for her.

From there we went through the kitchen and back to the family room taking in other things that meant something to her. Then she wanted to lie down on the sofa in the family room while I went to brush my teeth. When I came back, she was getting up and going to the living room again. She wanted to rest on the sofa among the things she had seen earlier in our walk through. Yes, her intuitive abilities are alive and well and providing her much pleasure even though I am sure she doesn’t remember any of the specific connections to our lives I had told her only ten minutes before. That would require her rational abilities, and they are almost gone. I think we could all take a lesson from Kate.  She takes such pleasure in things that we take for granted. It’s a wonderful world.

P.S.

Just as I was about to post this entry, Kate walked in the room and saw the picture of her and her brother Ken on the cover of the “Big Sister” album he made for her. She smiled and said, “I just love this picture.” She is now resting peacefully on the sofa across from me. She’s happy, and I’m happy.

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Thoughts on Living Normally

A couple of days ago, I read a Facebook post by a friend whose 8-year-old-daughter has Down syndrome. She and her daughter were in Nashville to make a pitch to the legislature not to overlook children with special needs when it comes to the education budget. She talked about the importance of providing special needs children with as many “normal” educational experiences as possible. I am not an expert with respect to those with special needs, but what she suggests makes sense to me. That has been my approach to care for Kate.

Right after her diagnosis, we talked about how we wanted to spend our time. We agreed that we wanted to focus on the kind of things that were important to us before Alzheimer’s. We didn’t think of it this way, but what we wanted was to lead normal lives. We wanted to remain active for as long as we could. That involved travel, attending live performances, dining out, and maintaining contact with friends.

It has been eight years since Kate’s diagnosis, but we continue to be as active as possible. I suspect we spend less time at home than many people our age. We are reasonably active in getting together with other people for meals and outings like our trip to Flatrock Friday night. Just the social engagement we have with our servers at the restaurants we frequent provides a source of social contact and support. I am sure they would never imagine the contribution they make to our lives.

I wish I knew a way to assess the impact our social engagement has had on us. I am sure it has enhanced the quality of our lives and probably helped us maintain a positive outlook on life even at the present stage of her Alzheimer’s. My best guess is that Kate is just past the mid-point of Stage 6 of the seven-stage model. Life is changing, but we are still active and happy.

Over time, we have had to modify our activity. Our last international trip was four years ago in May. We love Chautauqua, NY, in the summer. We’ve spent at least a week there in each of thirteen summers, ten consecutive years until our last one in 2017. The past two years we have rarely gone to any evening events that start later than 6:00. Thus, we no longer attend the Knoxville Symphony. We have been able to continue going to live theater performances because they all have Sunday afternoon matinees. We rarely attend church on Sunday because it is difficult to get Kate ready in time. As I have frequently reported, we no longer make our daily trip to Panera for Kate’s muffin in the morning. We usually go straight to lunch. That has cut down on our social contact. Until ten-to-twelve months ago, we often spent more than six or seven hours a day away from home. That is now four to six at the most.

My background in sociology has made me sensitive to the variety of environmental factors that can affect us. That leads me to believe that my friend whose daughter has Down syndrome is making a good point that the value of living a normal life is good for her daughter and other people with special needs. To the extent possible, Kate and I have tried to live as we did before Alzheimer’s. I believe it has worked.

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A Big Success with the Sitter

A year and a half ago, I engaged sitters for Kate. On the whole, it has gone quite well. Kate accepted having them from the start; however, she has never been enthusiastic about them. More recently, as she has become more dependent on me, she has sometimes wanted to go with me when I leave or for me to go with her and the sitter if they are going to lunch. Each time I have managed to let her know that I needed to go to Rotary, the Y, or a meeting, and she didn’t protest.

Despite Kate’s acceptance, I’ve never felt fully comfortable leaving her. I’ve done it because I feel that it is important for me to have time away to do other things. It also sets the stage for increasing the sitters’ time in the future. Two experiences in the past five days have made me feel better about leaving her.

The first occurred last Friday. As I walked into the family room where Kate and the sitter were seated, I heard the sitter tell Kate that she would see her “next week.” Kate apparently misunderstood and thought she might not be coming back. Kate looked frightened and said, “You’re not coming back?” Mary repeated that she would be back next week. Kate said, “Good, because I need you.” I was happy to see that she not only felt comfortable with the sitter, but there seemed to be an emotional bond.

On Monday, we had a different sitter, Cindy. When I got home, they were engaged in a conversation, and Kate was playing a very active role in it. Cindy told me that Kate had not taken a nap and that they had been talking all afternoon. That was another victory. We had two good experiences with two different sitters.

I found both of these experiences encouraging, but the biggest victory came yesterday with Mary, our Wednesday/Friday sitter. Normally, I would leave for the Y as soon as s arrives. We had just returned home from lunch, and I wasn’t going to the Y but a dental appointment at 2:00. I didn’t need to rush, so I talked with Kate and Mary about ten minutes. I think that worked better than my leaving as quickly as I usually do. When I told Kate goodbye, she didn’t show any sign of disappointment that I was leaving or that she couldn’t come with me. The big surprise came when I arrived home. I found the two of them were still seated in the same chairs they were in when I left. I asked if they had gone out. Mary said they stayed at home and never left the family room. They talked and listened to the music playing on my audio system when I left. She added that they both rested in their chairs a short time. After Mary left, Kate said, “She is really nice.” It wasn’t just the words. It was the emotion she expressed as she said them. She had a really good time with Mary, and I felt better about having sitters than at any time since we began a year and a half ago. That was a victory.

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Examples of Kate’s Intuitive Abilities

Kate continues to amaze me with her intuitive abilities. For example, today as we walked from the car to the restaurant for lunch, she said something to which I responded differently than she expected. She was surprised, and I said, “You mean you think I’m predictable?” She laughed and said, “Are you kidding?” I don’t know that predictable is quite the right word, but I do have rather predictable patterns. She regularly makes comments about my personal quirks/behavior, and she is always right even when she can’t remember my name or who I am.

Another incident happened after we returned home. It was preceded by my playing an album of choral music that she likes. Sometimes she likes to sing along with the music though neither of us can remember all the words. One of the songs on the album is “Comin’ through the Rye.” She wanted to sing it, but we couldn’t make out enough of the words. At home, she wanted us to sing it. I told her I would have to look up the lyrics. When I did, I found the original Robert Burns poem on which the song is based. Of course, it had the Scottish expressions. That didn’t work. She asked me to sing something else. Without thinking, I started singing “Amazing Grace.” We sang a few bars before she said, “That doesn’t sound very appropriate.” I felt the same way. It just popped in my head, but it didn’t seem like the most appropriate song for us to sing at that moment. Now, I’m glad I did because it shows how sharp she can be when it comes to her intuitive abilities.

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An Early Morning Conversation

Kate got up at 4:30 this morning to go to the bathroom. As I walked her back to bed, she started a conversation that lasted about fifteen minutes. Here’s an excerpt.

Kate:              “What’s the name of this place?”

Richard:        “This is our house.”

Kate:              “Really? It’s a nice place.”

I got back in bed.

Kate:              “What’s the name of this place?”

Richard:        “This is our house.”

Kate:              “It is?”

Richard:        “It really is.”

Kate laughs loudly when she realizes she hasn’t recognized her own house.

Richard:        “I love you.”

Kate:              “I love you, too. <pause> What’s your name?”

Richard:        “Richard.”

Kate:              “What’s my name?”

Richard:        “Kate, and we are a pair.”

Kate:              “We’re a good pair. Where are we?”

Richard:        “We’re in our house in Knoxville, Tennessee.”

Kate:              “I like it. We’re lucky.”

Richard:        “We’re very lucky.”

Kate:              “Where are we?”

I love our conversations. We are lucky.

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Yesterday’s Lunch-Time Conversation

At lunch yesterday, Kate asked my name and hers. I told her and then mentioned that we were married and have two children. Thinking that she might envision our children as little, I said, “They’re not really children now. Our daughter is fifty.” She was surprised and asked, “How old am I?” I told her we were both 78, and I would soon be 79. She said, “Well, you look it?” I said, “You think I look old?” She pointed at the hairline above my forehead and tried to say, “Look how your hair is receding.” She just couldn’t figure out how to say it.

Then she mentioned my glasses and asked if I always have to wear them. I said, “Only when I want to see you.” Then I told her I was getting new ones. She said, “Are they going to be bigger?” I said “The better to see you with, my dear.” She recognized the phrase and said, “Where did that come from?” I said, “Little Red Riding Hood” and recounted the portion of the story of the wolf in bed dressed up like Grandma. As I was telling it, I mentioned that the wolf had eaten Grandma. Kate reacted with horror and, rather loudly. said, “What?” Then I had second thoughts about the wolf’s having eaten her. I pulled out my phone and Googled “Little Red Riding Hood” and brought up the full story. I started reading it aloud to her. When I got to the part about the wolf, I quickly learned that I was right. The wolf really did eat Grandma. When I read that, she reacted exactly as she had before. It was quite noisy in the restaurant, so I don’t think anyone heard her. I didn’t see any need to get out “My Wife Has Alzheimer’s” cards. I continued to read. We were reminded that the wolf also ate Little Red Riding Hood, and the hunter cut open the wolf’s stomach and saved both Grandma and Red Riding Hood.

Kate was quite taken with the story and how gruesome it was. It’s hard for me to remember exactly what we said after that, but I said something about the changes in the way people look at such stories for children these days, that we take a more sanitized approach to them. It was not a conversation of great depth, but we did talk about how children generally accepted the gruesome elements as part of a fairy tail and focused on the entertaining aspects of the stories and their messages of morality. I was really taken by how engaged she was.

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What a Difference a Smile Makes

Several times I’ve mentioned Kate’s smiling as I enter the bedroom to check on her in the morning. I love that smile. It reminds me of those days before Alzheimer’s. Even now as I understand that the smile doesn’t mean that she remembers my name or that I am her husband, her smile gives me a good feeling. I think “What a great way to start the day.”

It’s not always that way. Take yesterday for example. She wasn’t smiling. Instead, she looked as though she wished I hadn’t come in. Now that I am more aware of her ability to learn intuitively, I suspect she knows that when I walk in, I am probably there to get her up. Yesterday she told me she wanted to stay in bed a little longer, perhaps a lot longer. So it is understandable that she didn’t smile. It was only when I told her Mary, our sitter, was coming and that I hoped I could take her to lunch that she decided to get up. As usual, she was appreciative and thanked me for helping her get to the bathroom and dressing, but she expressed her independence and was irritated at my attempt to help.

She joked with me as we prepared to leave the house. It was one of those times when her jokes had a little bite to them and, of course, at my expense. I didn’t joke with her. Kate has never been one to joke. I have often joked with her. Like all jokers, I sometimes go too far. A year or two ago, I felt our joking with each other was getting out of hand. I stopped. I started responding more lovingly all the time even when she joked with me. I think that had a great impact. She still likes to kid me, but it seems less bitter.

She didn’t say much as we drove to lunch. As I helped her out of the car, she said, “I love you.” For the balance of the day, she was just fine. When we went to bed, she said, “It’s been a wonderful day.” I agreed. I like her smiles. Even when she doesn’t begin with a smile, she ends with one.

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A Tender Moment This Morning

I looked at the clock. It was 5:45. As I rolled over to get up, I heard a soft chuckle. Kate often does this when she recognizes that I’m awake. I think it’s her way of saying, “Hello, I’m awake too, but I’m not ready for conversation.” I reached over and touched her arm. She pulled my arm around her. It was a loving response. She didn’t appear to be afraid. She just wanted to be held. Neither of us said a word. I held her until 6:15 when I got up.

As I was finishing up in the bathroom, she came in. When she was ready to go back to bed, she said, “What do I do now?” I told her it was still early and that she should go back to bed. She said, “Where is it?” I walked her to the bed. She sat down and said, “Thank you.” I said, “I love you.” She smiled and said, “I love you too.” Then, as so often happens, she said, “What’s your name?” This is just another example of the loss of her rational abilities while retaining those that are intuitive. In this case, her feelings for me. Tender moments like this continue to sustain me as her life and mine keep changing in ways I wish I could stop.