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A Good Last Day with the Franklins

Late yesterday afternoon, Virginia and Ken caught a flight back to Texas. It was a very good visit for us, and, I believe, for them. I really hated to see them go. Given Ken’s own Alzheimer’s diagnosis, one might expect them to be understanding of our situation, and they are. They are also very thoughtful guests and were long before Alzheimer’s entered both of our worlds. They are the only people I know who can visit and make you feel like you are the guest. That’s a good thing; they make you feel special.

For me, the highlight of the visit was the first afternoon when Kate and Ken spent over three hours together going through family photo books. Even though Virginia and I were in the kitchen the whole time, it was special for us to know they were having such a special moment together.

Each day Kate slept late and would have slept later if I hadn’t gotten her up. Yesterday she was especially tired, but she got up without a fuss. I hated to wake her, I felt like the time with the Franklins was too precious to let her sleep too long.

I’ve reported on two recent social situations in which Kate’s conversation has been unusually bold as though she were working to get attention. She had one of those experiences yesterday before going to lunch. I think she was trying to be humorous, but it wasn’t working. It was totally unlike her. It continued for a time at lunch, but she soon settled down.

Kate and Ken have a cousin whose husband had Alzheimer’s. I know that she used to carry small cards that she gave to people letting them know of her husband’s diagnosis and asking for their understanding. I’ve kept that tucked away in the back of my mind for a  long time but haven’t felt a need for them. These recent experiences have led me to believe otherwise.

After returning from lunch, we had another hour to relax before the Franklins left for the airport. I have to admit to more than a bit of sadness as their departure approached. I can’t predict if and when the four of us might be together again. As I have said in other posts, I know it is unlikely that we will make another trip to Texas. I also know that Kate will not be the same if they are able to visit us again. In that sense, this visit was another of those “last moments” that become treasured memories.

There were a number of things that made our time together special. The obvious one is the sibling relationship between Kate and Ken. It is also the longevity of our relationship as couples. We have lived apart all that time, but we have visited in one another’s homes many times. We have shared responsibilities of parent care. Now there is something else that unites us. We are all living with Alzheimer’s. Throughout their visit, I could sense that connection. Ken and Virginia were very understanding about things like getting started in the morning and my having to step aside to help Kate get ready. It was a little like having a support group at our house for the entire visit. I’ll miss that.

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Another Good Day

Kate didn’t want to get up yesterday. I suspect that may have been a result of our having gotten to bed a little later the night before and our early morning experience when she lost another hour’s sleep. Not only that, I feel sure it was taxing for her to be in a lengthy social situation during most of the day and that evening. Ken and Virginia went to Panera early and then came over to the house while I was trying to get Kate ready. Their being here helped me explain why I wanted her to get up. She didn’t protest at all. She was simply tired.

We went to lunch at one of Ken’s favorite places from his past visits. We ended lunch with a special dessert, hot fudge sundae over a brownie in a large goblet. Kate and I have watched it served during the forty years we have eaten there. We’ve always said that one day we would have to try it. It was Ken’s birthday. That seemed like the time, and it was.

Once back at the house, Kate lay down to rest in our bedroom. I think she rested a full two hours before I got her up. She and Ken looked over more of the photo books and then we were off to dinner. We had another good meal, conversation, and, of course, a high-calorie dessert. It was another good way to celebrate Ken’s 75th birthday.

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A Great Day with the Franklins

I love being able to report good news, and that’s what I have in this report. Yesterday was our first full day with Ken and Virginia. Kate did not sleep as late as she has been. That enabled us to meet them at Panera for Kate’s muffin, morning beverages, and good conversation. From there we went to lunch at Carla’s. We are taking them to some of our regular places to give them an idea of our daily routine for the past few years.

If the day had ended right after lunch, I would have said we had a really good day, but the best was yet to come. Virginia and I were both hoping that Kate and Ken would have an opportunity to enjoy their time together apart from the four of us. I wasn’t quite sure how we might orchestrate that, but that turned out not to be a problem. After we returned home, they sat down on the sofa in the family room and started looking at some of the family photo books. Virginia and I made an exit to the kitchen. The two of them reviewed family photos and talked for at least three hours. I don’t recall another time that Kate has engaged in conversation with anyone else for that length of time.

I only wish I could have listened in on what they were saying. I do know one thing. More than two hours after they had been talking, Virginia heard Kate say, “What’s your name?” After Ken answered, she said, “And you’re my brother?” Later I mentioned that to Ken. He said she asked his name several times as they were talking. He said she asked very naturally. I was so glad he had that experience. That is exactly the experience I have with her.

Before we left for dinner. I asked if she would like to use the bathroom before we left. She said, “Yes, where is it?” I told her I would show her. She met the three of us in the kitchen a few minutes later. She walked in as though she had never been there before and said, “This is a nice kitchen.”

We topped off our day with dinner at Casa Bella. It was the last night for their program of music from Les Miserables. All of us enjoyed the music and food. It was a great evening and a suiting end to a very good day.

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Music and Time with Friends

After returning from the museum yesterday, I decided to make dinner reservations at Casa Bella. I knew it was one of their Broadway nights and that they were having another performance of the music from Les Miserables. We had already seen it once, so I wanted to see if we could eat in the front room that is separated from the music. To my surprise, they told me that I had reservations for four people in the room with the music. At first, I started to decline. Then I thought it might be fun to go and take someone with us. We’d been to dinner with Angela and Marvin Green a couple of weeks ago and have talked with them about the music nights at Casa Bella several times. I called, and they were able to go with us.

Kate and I had a wonderful time. Both the conversation and music were “as good as it gets.” It was a lively audience. That meant it was noisier before the music started. That didn’t prevent our own lively conversation. I do think it was harder for Kate to understand what was being said, but she enjoyed herself as much as the rest of us. She was moved by the music and expressed her joy audibly though softly enough that only those seated close to her could hear.

It was a day that could have been an ordinary Thursday, but it turned out to be special. The visit to the museum and the dinner and music with good friends were the highlight. I make a point of this because so many of my recent posts have focused on Kate’s decline, and I like to communicate that we continue to enjoy life. I don’t mean to minimize the sadness that accompanies Kate’s Alzheimer’s, but the stimulation of getting out as much as we can makes a significant difference in how well we are able to adapt. It works.

After dropping the Greens off at their home last night, Kate said, “Are we legal?” I said, “Do you mean ‘Are we legally married?’” I told her we are, and she said, “Good.” Later, when we got in bed, she said, “I love you.” I said, “And, we’re legal.”

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A Visit to the Art Museum

I’ve been thinking about taking Kate to our local museum of art for some time . The past several days have been cold and rainy. It seemed like a good time to act on that desire. We went right after lunch yesterday. I didn’t tell Kate where we were going until we got out of the car. That’s when I mentioned that the museum had been undergoing a renovation, and I was interested in seeing what it was like.

Once in the gallery she was quite interested. I was surprised that she seemed to express more interest than I have noticed on previous visits to that museum or any other. Her interest was diverse and included sculpture and paintings of different periods and styles. It did not surprise me that she was taken by several paintings that included children and babies. One sculpture that she liked was of a young boy unclothed sitting in a chair. The accompanying information indicated that it was a depiction of childhood innocence. Moments later, perhaps seconds, she turned around to look at something else. When she turned back, she saw the sculpture again and responded as though it were the first time. She did the same thing with another favorite painting. It was a mother with her infant child in her lap. She had a hard time taking her eyes from it.

We had been there almost an hour when Kate wanted to find a restroom. I walked her to the door and waited just outside. In a few minutes, I heard her say, “Hello. . . Hello.” I suspected she was “lost.” I opened the door and said, “Hello.” She hadn’t been able to find the door. It was located so that she couldn’t immediately see it from either the stalls or the sinks. She hadn’t panicked, but she was relieved to see me. (This reminded me of an incident in Memphis the last time we visited our daughter Jesse. Kate locked herself in the restroom and couldn’t figure out how to unlock the door. This past Saturday when we visited our friend Ellen in her memory care facility, an attendant showed us the restroom and said that the door was always locked from the outside but not from the inside. They were not going to take any chances of a resident’s being locked in. One doesn’t usually think about little things like this until coming face-to-face with Alzheimer’s.)

I decided we had had a good visit. It was time to go back home. I plan to return soon.

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Another Slow Start and Strong Finish

Because we were going to Nashville yesterday to visit our friend, Ellen, I wanted to get Kate up a little earlier and hoped that would be possible given that she went to bed earlier the night before. That wasn’t to be. It took over an hour to get her out of bed. She was very tired, but I didn’t rush her. She never got upset with me. Nor did she give me any strange looks as though she didn’t recognize me. Close to the time she got up she said, “Where am I?” I told her she was in her bedroom at her house in Knoxville.” She said, “Who are you?” I said, “I’ll bet I don’t look like a stranger.” She said, “No.” Then I told her that I am her husband. She didn’t express surprise or any other emotion. Then she asked, “What’s your name?” After I told her, she said, “What’s my name?” I told her. Again, she asked, “Where am I?” Then, “What’s your name?” She asked me to repeat my name slowly. Over the course of the next 10-15 minutes, she repeated these questions several times.

She wanted my help getting out of bed. She also wanted me to tell her what she should do. I suggested that she go to the bathroom and then get dressed. That gave her too much information. I led her to the bathroom. After using the toilet, she wanted to know  what she should do. I told her she should brush her teeth. When she was finished, I helped her with her clothes. She still likes to do as much as she can, but she also likes me to help, especially determining the front and back of her pants and top. She also gets her feet stuck in the pant legs. I get the bottom of the pant legs over her feet. Then she is fine.

After she was dressed, she began to appear normal. We had a quick lunch at Panera and left for Nashville where we had a good visit with Ellen. She was surprised and glad to see us. I am sure that her daughter had told her we were coming. She just can’t remember. That is one of the few signs I can see of her memory problems. She is always surprised to see us. I also notice it in other things like her not remembering the names of her grandchildren. During our last visit, I noticed some signs of confusion. This time she seemed more confused. I was surprised, however, that I was able to understand more of what she said this time than the last. It could be that her ability to speak goes through ups and downs in the same way that Kate’s memory does.

We were with Ellen a full two hours. We don’t often stay that long, and it didn’t seem long at all. I didn’t play as much music as our two previous times, but it was just as meaningful as before. I played a series of YouTube videos of Renee Fleming. At one point, Kate reached out and took Ellen’s hand, and they shed a few tears as they enjoyed the music. I love seeing each of them express such enjoyment. I sometimes wonder how long we will be able to keep up these visits. Both of them are declining, but I don’t see anything yet that will prevent our continuing to come. I hope that’s so.

We stopped for dinner on the way home. It was a restaurant that is a cut above most of the ones we frequent, but it seemed like a good way to celebrate such a nice afternoon. It made for another nice moment for Kate and me. We got home late, so I’ll be interested in seeing when Kate gets up this morning. I checked on her a few minutes ago. She had gotten up to go to the bathroom and then went the guest room and got into bed. When I asked if she wanted to rest a little longer, she smiled and said she did. I didn’t see any sign of confusion, and she seemed both cheerful and relaxed.

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Still Having Great Times

Earlier this week, I saw a tweet that staff at facilities often view all of their dementia patients as though they are in the late stages and treat them accordingly. I replied that I believe most people do the same thing when they learn that someone has dementia. We only think of the symptoms that occur in the late stages. I believe that is the reason many friends and family members take so long to recognize that someone has the disease. Although the pace at which Alzheimer’s progresses varies from person to person, there is often a long period of time during which the person with dementia is able to function quite well. Some experts say that the disease may begin as early as twenty years before getting a diagnosis. I’ll never know the starting point for Kate. I know that she thought she had Alzheimer’s at least five years before her diagnosis. That will be thirteen years ago in January.

During that period of time, Kate’s symptoms have gradually become more and more obvious to her and to me. They are less obvious to many other people we are around. I am grateful for that. It has allowed us to continue an active social life much longer than I would have expected. It’s not just that we are active. We still have very good times. That was true yesterday.

It was one of those days when she slept late. It took me over an hour to get her up. We didn’t get to lunch until nearly 1:00. Despite her wanting to stay in bed, she was in a cheerful mood. We didn’t do anything special until the evening. It was jazz night at Casa Bella. The music was beautiful, and the crowd was especially enthusiastic. Kate may have been more enthusiastic than most. The program always consists of many ballads and standards with which people our age are quite familiar. At one point, I looked across the table at Kate and noticed she was mouthing the words to many of the songs.

For the past year, another couple has joined our table for jazz night. Last night, Kate sat by the wife and I sat by her husband. During one of the breaks, I asked the man if he was aware of Kate’s Alzheimer’s. This is something I like for people to know because she sometimes says or does something that might seem a little unusual. He said he and his wife were aware. Then he added that if he didn’t know, he wouldn’t be able to tell. He felt she gets along quite well.

I thought she was especially alert yesterday. I had NPR on the radio and Kate asked, “What’s her name?” She was referring to the newscaster, but I wasn’t sure and said, “My name or hers?” She laughed and gave me a look that said, “Are you kidding?” and said, “You thought I forgot your name?” I didn’t say a word about how often she does ask.

There were other times during the day that she did ask my name. On the whole, however, she seemed to relate to me as her husband. Something else I have noticed makes me feel she comes in and out of those moments when she doesn’t know me. That is in bed at night. She often rolls over and puts her arm around me. There are also times that she wakes up when I get up to go to the bathroom. In those cases, she often moves closer to me and puts her arm around me when I get back in bed.

We are approaching seven years and ten months since her diagnosis, and thirteen years since the first signs. Kate’s symptoms are much greater now than at that time. She has declined significantly more in 2018 than in any other year. That has been especially true in the past six months. But we still have great times, and I am hopeful they will last a while longer.

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A Full Day Yesterday

Despite Kate’s getting up unusually early yesterday, she didn’t nap at all. Part of the reason was that, except for two hours, we were gone all day. I had fully expected her to want to return home from Panera for a nap before lunch, but we stayed there until meeting our pastor for lunch at another restaurant. We had a very good visit with him and took a longer-than-usual lunch. Kate handled herself beautifully. She had been the volunteer church librarian for 19 years. Our pastor commented about the contribution she had made in that role. It didn’t take any encouragement for Kate to speak up about the library and how she managed it. I love seeing her get opportunities like this. On so many other occasions, she finds herself in conversations in which she is unable to contribute much.

We had just enough time to freshen up before Kate’s bi-weekly massage. Kate was in the waiting area of the spa when I picked her up. I said, “Did you enjoy it?” She said, “What?” I said, “Your massage.” She said, “I didn’t have a massage.” That’s a striking example of how short “short-term memory” can be.

After that, we came home for two hours before going to dinner. During that time, we relaxed in the family room, she on her iPad and I on my laptop with music playing all the time, of course. It was a very pleasant time. We followed that by going to dinner at Bonefish Grill.

Near the end of our meal, Kate wanted to use the restroom. It was located in a direct line from our booth to the back of the restaurant, but I walked her there to avoid any confusion. Then I went back to our booth and sat on her side of the table so that I could watch for her when she came out. I wasn’t surprised when she walked out of the restroom and took an immediate left instead of walking straight to our seats. When I caught up to her, she was entering the section where the bar is located. I called to her, and she turned around. She looked very relieved. When we got back to our seats, she thanked me for getting her. Then she said, “I didn’t panic at all.” Moments later she confessed that she was worried and thought I might not be able to find her.

On the way home, Kate said, “If someone were to ask where we live, what would you say?” I told her. Then she said, “Who are my parents?” That prompted me to tell her not only their names, but that her Dad was from Fort Worth and her mother from Battle Creek. Then she asked how they got together. As I told her about their meeting in Michigan, falling in love, their marriage, and her mother’s moving to Texas, she was excited just as though this were the first time she had every heard the story. For her, of course, it really was like the first time. She showed no recognition at all of her mother’s being from Michigan or anything else I told her.

I wasn’t surprised that Kate wanted to get ready for bed soon after we got home. First she brushed her teeth in the guest bath next to our bedroom. When she came out she didn’t know where to go. I heard her say, “Hey” and went to her. I brought her to our bedroom. A few minutes later she left to get something. She got lost again. Again, I heard her say “Hey.” This time she had made her way to the kitchen. It’s just another example of how even the things she has held on to the longest are drifting away.

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Visiting the Zoo

I have been increasingly concerned about Kate’s mobility in recent weeks. She has been unusually slow getting into and out of chairs and the car. She is also slower going up and down curbs and stairs. Thinking it might be her arthritis flaring up again, I’ve asked her if she is experiencing pain. Each time she tells me that she feels no pain at all, that she is just being careful. I can’t help thinking this is a result of her limited physical activity. When she used to work in the yard, she moved around from place to place. It wasn’t like walking for exercise, but it was much better than remaining in a sitting or lying position all day.

Lately, I have thought about getting her to the zoo or to a couple of the museums in town. Yesterday was the perfect day to try out the idea. The temperature was in the lower-70s without a cloud in the sky. After returning home from lunch, I told Kate it was such a beautiful day that I thought we should get out. She agreed.

She didn’t ask where we were going. She just got in the car as though we were going to Panera or Barnes & Noble. When we drove into the parking lot at the zoo, she said, “Where are we?” I told her we were at the zoo. A number of times I have mentioned the possibility of going to the zoo, and she wasn’t interested. That is why I didn’t tell her where we were going until we got there. Even then, I told her that I needed to renew our membership. That was true. Then I said, “We might as well take a look around.” She followed me in without raising any protest at all.

We hadn’t walked far when she said, “I don’t want to walk much.” I told her we wouldn’t stay long. I went prepared to leave after a short time if that were necessary, but it wasn’t. We had gotten there about 3:30, and they closed at 5:00. That worked out well. She loved everything. You would naturally expect her to be taken by the animals, and she was. Given her experience with gardening and the fact that the zoo has invested heavily in landscaping, it was no surprise that she really loved the trees, shrubs, and other greenery.

One of the highlights, as it has been on previous visits, was the Lorikeet exhibit. As you enter the area with its net covering the entire space, you are given a small cup of nectar to feed the birds. Since it was late in the day, they weren’t as hungry as they usually are. Only two birds came to drink from my cup and one to Kate. Another bird accidentally got into the back of the top Kate was wearing. I didn’t see it happen. I only heard Kate shriek. The bird got out quickly, and everything was fine. We had a great time. Kate was like a little child. We’ll definitely go back while the weather is still good.

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Another Surreal Experience, A Moment to Treasure

If I didn’t already know that it’s possible to find joy in living with Alzheimer’s, I would be a believer now. Last night, Kate and I had the most incredible experience. It’s one I never would have imagined. Before going further, I should tell you that it can also be viewed through the lens of sadness, but it was pure joy for Kate. Because of that, it was a moment of joy for me as well, and it lasted more than an hour.

As we returned from dinner, Kate commented on a neighbor’s house. She said, “I remember that.” Our house is two doors down. I turned into our drive and parked in the garage. When Kate got out of the car, she looked at the trees at the back of the house and walked out of the garage to look more closely. She loves looking at the trees, ours and everyone else’s. Instead of turning around and heading toward the door from our garage to the laundry room, she turned toward the driveway back to the street. She suddenly realized she was going the wrong direction and said, “Where am I going?” I walked over to her. She pointed to our patio and said she just wanted to look around for a few minutes. She loved everything she saw. She commented on the patio itself, the arrangement of the furniture, the swimming pool, and the landscaping. It was as though this were the first time she had seen any of these things. In a minute, I suggested we go inside. She said, “Is it all right?” I told her it would be fine.

We spent the next hour going through every room in the house. As she had done outside, she commented on everything – the rooms themselves, the furniture (some of which I explained was from her parents home), the photos and artwork. She loved everything, even the laundry room that is pretty much like any ordinary room between the garage and kitchen. She was particularly struck by the family room. We walked around it for a while. Then she wanted to go into the living room. She was taken with a wedding picture of our daughter, Jesse, and her own wedding picture that was taken in her parents’ home. From there we entered the dining room. She loved seeing a portrait of her mother as a young girl and another of her grandfather on her mother’s side. We went through a door into the kitchen where she continued to be taken with everything she saw. In several rooms she commented about their not looking pretentious but representing a particular period. After leaving the kitchen, she wanted to go back to the living room, so we did. She apparently hadn’t remembered that we had just come from there. She expressed an equal measure of enthusiasm the second time around.

When we got to our bedroom and bath she said, “I would love to stay here tonight, but I know we can’t.” When I told her we could, she was thrilled. We continued to the other rooms. She loved each one. This was very similar to a surreal experience I mentioned a week or two ago. She mixed things that made sense with those that didn’t. There were times when it was clear that she remembered its being our house but not the one we are living in now, one that we had lived in sometime in the past. At other times, it appeared that she thought this was her family home. She specifically mentioned its meaning so much because it was a place that meant so much to her family.

Toward the end of our tour, she was very emotional. Tears welled up in her eyes as I’ve seen a number of times lately, in fact, just the previous night at Casa Bella. She said, “I am so glad we could experience this together.” I told her I felt the same way. She was so very confused, but she was also very happy.

When we finished, she wanted to relax in the family room. I put on some music, and she began to work on a puzzle on her iPad. It took her a little while to become fully focused on her puzzles. She kept looking around the room and commenting on things she liked.

As I said earlier, one could think of this experience as a sad one, and I understand that. How I wish she didn’t have this disease, but no one has figured a way to get around that. I am just grateful that we can share joyful moments like this one. We have many more good times than bad ones, but last night was very special for both of us. Living in her world really pays dividends.