A Good Day

After resting so much the day before, I hoped that Kate would be up a little earlier yesterday. I got my wish. I didn’t have to wake her. She wasn’t up early enough for Panera, but we did get to lunch shortly after 11:30. She was happy, and we enjoyed our lunch time together.

It didn’t surprise me that she wanted to rest as soon as we got home. She is doing that quite regularly these days. We had hair appointments at 3:00. About 2:25, I reminded her of that, and she got up right away. She took a little time to brush her teeth and use the bathroom, but we arrived for our appointments almost ten minutes early.

When we returned home, she worked on her iPad until time for dinner. That was a little over an hour. She continues to have trouble with the puzzles but did pretty well.

The best part of the day occurred at home after dinner. I have mentioned before that Kate often says, “That goes in the book.” She does that whenever we are talking about things that happened in the past. Almost a year ago, I jotted down a number of things that I thought were of importance to her. That includes the names of her family (grandparents, parents, brother and his wife, our children and grandchildren) our courtship and marriage, places we have lived and traveled, as well as a couple of letters I had sent to my parents when we were dating, one from Kate’s mother to my parents during that same period of time, and another from our son that he sent to us after our 50th anniversary. I put the information in a three-ring binder and included some family photos in the back.

After dinner, I asked Kate if she would like to look at it while I watched the news. She did and enjoyed it. It was difficult for her to read, and she asked me to read parts to her. I was pleased that she was interested. She hasn’t expressed much interest until the past few days. She prefers her photo books. I suspect her memory loss may play a part in the recent appeal of reading about things that have been so much a part of her life.

Going through the book gave a little more understanding of the challenges she has with reading and her photo books. For example, I read the letter from our son. I, of course, told her it was from Kevin. In addition, he talks about us and our marriage from his perspective throughout the letter. When I finished with “Love, Kevin,” she was almost in tears. She said it was beautiful and thanked me for writing it. It’s another illustration of the weakness of her rational abilities and the strength of her intuitive ones. She couldn’t remember that it was from Kevin nor pick up that it was from him by what he said. She was, however, able to pick up on the feelings expressed. She may have assumed it was from me since I read it to her.

Another example involved four photographs I had just added to the binder. One of those is of her grandmother that was taken in Lucerne, Switzerland in the mid-1930s. The other is one of us taken in the same spot in 2015. I had them enlarged to 8 x 10s so that she could see them more easily. I told her who the people were and asked if she noticed anything about where the pictures were taken. She didn’t understand what I was asking. I said, “Do you see anything similar about the two pictures?” It took a lot of help on my part for her to see they were taken at the same place. She would never have noticed without my help.

The other two pictures were of her mother taken on the boardwalk in Quebec City with the Chateau Frontenac Hotel in the background and one of Kate taken in the same place. Her parents had stayed at the hotel on their honeymoon in 1936. We stayed there our on our 41st anniversary in 2004. I went through the same routine with these pictures. I’m not sure she ever understood what they had in common. If she did, it didn’t generate any interest. She was, however, interested in the binder’s overall contents. I am glad about that because it gives her something else to enjoy besides her puzzles and photo books. I also intend to add more information. There is plenty of material I can add. The challenge is how to package it in such a way that it is not overwhelming.

By the way, I originally printed it in a 14-pt. font. I have gradually increased it to 36. I think that may be where I stop. She seemed to be able to read that.

The Fickle Nature of Memory

The other night at Casa Bella I saw a woman who has been a regular the entire time we have been going to their music nights. For the first time she was without her husband. I saw her afterward and asked about him. She told me he is now in memory care. I was surprised. I’ve seen him about once a month for the past four or five years. How could I have missed that?

By now, I should know. It’s not really hard at all. Even at this late stage, Kate can get along quite well in short-term social encounters without anyone’s suspecting. The nature of most social interactions is so superficial that it’s easy to miss a “disability” that has so little or no visible signs.

As Kate’s husband, I have far more opportunity to observe the many signs that others can’t see. That makes me think of something that can be hard for others to understand. That is the surprising way in which she can switch from “knowing” to “not knowing.” One of the best examples is the issue of her “knowing” me. In a couple of months it will be a year since she first asked my name. It would easy to think that she had “forgotten” my name, that it was completey forgotten it. That wasn’t so, and it isn’t so with other memory problems.

All of us have similar experiences. We forget one moment, but we remember in another. We don’t think much about it. I believe that is why people don’t ordinarily think they may have dementia in the early stages. As time passes, the memory problems become more frequent and enduring. That’s when they take on new meaning, especially for the person herself and those close to her.

My experience with Kate has made me realize how little I knew about my mother’s dementia. I was with her a lot, but not nearly enough to understand the full extent of her problems. My father said very little. That meant I was largely ignorant of what was really going on.

Living with Alzheimer’s through Kate has opened my eyes to many things. One of those is how memory comes and goes although the trajectory is always in the direction of less ability to remember. Kate is at a stage when her memory doesn’t usually last more than a few seconds. Even then, her memory is inconsistent. What I mean is that at one moment she can remember a name. In another, she forgets it, and quickly thereafter remembers again.

Last night she put down her iPad. Suspecting that she might have gotten frustrated with it, I asked if she would like to look at one of her family photo albums. She liked the idea, and I brought her the “Big Sister Album.”

As I handed it to her, she noticed the cover photo of her and her brother. She loves that photo and almost always comments on their smiles. This time she didn’t say anything. She took a moment to look at it. Many times she recognizes both children. Other times she doesn’t. She said, “Is that me?” I told her it was. She pointed to her brother and said, “Who’s that?” I told her it was her brother Ken. Then she looked at the photo more carefully and did comment on the smiles. She was hooked.

I was about to take a shower and thought this would occupy her until I got out. I discovered, however, that she had difficulty reading the text and couldn’t recognize her family. She wanted me to help her. It wasn’t a complete failure to recognize her parents, her brother, or grandmother. Sometimes she did. Sometimes she didn’t. That could relate to the photos themselves. Some are sharper than others, and sometimes people can look a little different from different angles or when they are in different contexts.

In this case, I don’t know exactly why. I do know that her vision is affected by her Alzheimer’s. I also suspect that her memory of faces is becoming more limited as well. I also know that the loss of her rational ability prevents her from making connections that would help her guess the people in many of the photos. You and I would understand that the odds are pretty high that they would be of her parents, her grandmother, her brother, or herself. She doesn’t appear to recognize that.

I did get in a quick shower, but we spent about forty minutes going through the album. I recorded about five minutes of that time. Here are a few examples.

Richard:        “That is your Nana, and look who she’s with.”

Kate:              “Me.”

Richard:        (Pointing to Ken) “Who else is there?”

Kate:              “And who’s that?”

Richard:        “That’s Ken.”

Kate:              (Very excited.) “That’s Ken? My brother.”

Richard:        “Yes, your brother.”

Kate:              (Chuckles with excitement like a little child)

Richard:        “Now who do you think these three are?”

Kate:              “I don’t know.”

Richard:        “Those are you.”

Kate:              (pointing) “That’s me?”

Richard:        “Each one of those is you.”

Kate:              “That one too?”

Richard:        “That’s you on a tricycle.”

A Page Later

Kate:              “Oooh. That’s wonderful.”

Richard:        “Who do you think those people are?”

Kate:              “My daddy and me. . . Look each one is happy, especially me.”

We moved further through the book. We saw many more pictures of her father and her mother. Early on, she asked me their names. Each time she would repeat them. Sometimes the very next picture was her father. She would say, “Who’s that?” I would tell her, and she would ask, “What’s his name?” I would tell her, and we would go to the next picture and repeat the same questions. Not always, but sometimes. It makes me wonder what triggers memory and what causes it to disappear as rapidly as it appeared. That’s something I’ll probably never know.

I see these kind of things a good portion of every day. The servers we see in restaurants or the friends we bump into or almost anyone else we encounter on a daily basis would never know. In fact, there is much I don’t know myself. For example, I wonder how long Kate was struggling with my name before she finally asked me. I suspect she might have had some hesitation the first time. Now it is as natural to ask her name or mine as breathing air.

I believe there is something else captured in the conversation above. That is how happy she is. It is obviously saddening to see her stumble over names, but the excitement she experiences as she goes through her album offsets the sadness. I hope she is able to maintain this spirit for a long time. I know that I’m going to do everything I can to help.

Another Good Experience with the Sitter

I don’t have a good explanation, but Kate has seemed to accept the sitter happily over the past three weeks or so. Yesterday’s experience was the best yet. It reminded me of another experience in that I didn’t leave immediately after Mary arrived. I was trying to take care of some last-minute tax business and continued working at least another thirty minutes. I was in the kitchen and could hear the two of them talking but had no idea what they were talking about.

When I was ready to leave, I walked into the family room where Kate and Mary were seated side by side on the love seat. They were looking at one of Kate’s photo books. I assumed it was one of the family books. When I got closer, I could see that it was a photo book I had made two years ago with photos taken during several of our summer visits to Chautauqua. I stopped a minute and just listened. Kate was telling her about the beauty of the places in the photos. She came to one and said, “I don’t know what this is?” I told her.

Knowing that recently Kate has been unable to remember Chautauqua, I couldn’t help but wonder what she had been telling Mary. It was clear that she was saying something about the various pictures. I was just happy to leave her while she was having such a good time.

When I got home, they were seated in exactly the same place. This time they were looking at photos from an old album that I believe her father had put together. Kate said, “You should have gotten here earlier. We needed you.” I said, “What for?” She said, “To help us identify who all these people are.” I identified her mother and father. Before Mary left, she told me that they had taken a break during the afternoon. Kate took a nap. Then they went back to their photos. I felt good knowing that Kate had been perfectly comfortable while I was away. The way I saw them interacting was just like two friends talking. I consider that a real victory.

After Mary left, I sat down with Kate. We spent the next fifteen minutes looking at photos before she said she was getting tired. It was getting close to dinner time, so I suggested we get ready for our Friday night pizza.

I should add that one thing Kate has lacked the past four years is a close friend. Prior to that she and her friend Ellen ate lunch every Monday while I was at Rotary. They also got together one or two other times during the week. Ellen’s stroke changed everything. The stroke occurred while she was visiting her daughter in Nashville. She was never able to return to home and has been in memory care for almost two years. Kate and I visit her regularly, but that is very different from the kind of relationship the two of them had for so many years. Thus, the development of a closer relationship with the sitters could go a long way in filling the vacuum that Ellen left behind. I don’t expect the relationship to be the same as it was with her, but I feel encouraged by the way things are going.

Anxiety Attack Is Over

As in the past, Kate’s anxiety attack didn’t last long. It was over before she went back to sleep. When she awoke, she was just fine. We enjoyed ourselves at lunch. I didn’t ask if he knew my name, but I believe she probably did and that I am her husband.

This is our day for a sitter. When I left, she and Mary were seated on the sofa looking at a photo album of Kate’s father’s family. The only thing Kate said when I said goodbye was “What are we going to do?” I told her she could look at photo albums, work jigsaw puzzles, watch DVDs or YouTube video, or go to Panera. That satisfied her. She was just fine. In fact, she has reacted very positively to her sitters the past two weeks. I love it.

A Nice Visit with Longtime Friends

Several of our longtime friends live in Nashville, and we have visited all of them periodically for many years. During the past six to eight months, we haven’t done as well. We have continued to see our friend Ellen who is in memory care there, but I have not been good about arranging visits with the others. I miss seeing them and need to make a serious effort to see them more during the rest of the year.

As a first start, I arranged for us to see Ann and Jeff Davis in connection with our regular visit to see Ellen. Because Kate has often slept so late, we have been getting to Nashville late in the day to see her. That puts us back in Knoxville later than I like. This time I decided to visit the Davises in the afternoon and stay overnight at a hotel. That way Kate can sleep late, and we will be able to see her earlier. So far that is working well.

Even though she can’t remember, I always tell Kate where we are going and who we will see. I did that the day before we left, the morning we left, and even in the car on the way. When we parked at their house, I said, “This is the Ann and Jeff Davis’s new house. She said, “Who are they again?” I explained a little about our history together and told her that she and Ann had been very close when they lived in Knoxville. She surprised me when she said, “She and I used to talk a lot about our daughters.” That was the first time in recent memory that I can remember her recalling something like that. She didn’t say anything more specific, but I remember they talked about their daughters who are the same age and attended the same schools during middle school and high school.

In advance of our visit, Ann and I had several email communications. She had asked advice about engaging in conversation with Kate. I gave her a few suggestions and explained how well she has been able to get along and that I expected it would be the same on this visit. We got off to a good start when Kate noticed the flowers planted around their house. Ann and Jeff had seen us coming up the walk and came out to greet us. Ann and Kate had a few minutes to connect as they talked about the flowers and trees at the back of the house.

As we walked inside, we took a tour of their new home. It wasn’t planned at all, but we divided up so that Ann took Kate and Jeff took me. I think that made for a good beginning. I believe that gave Kate a chance to reconnect with Ann before the four of us sat down to visit. Kate took great interest in their home. For the next two hours we sat on their sun porch and talked.

Some of the conversation was between Ann and Kate and some between Jeff and me. For the most part, however, it was the four of us. Kate was not especially talkative, but she was comfortable and participated without any problem. As in other conversations, Kate said things that are not correct. For example, Ann asked if we used our pool very much. Kate told her that she used it more than I. The truth is that neither of us has used in much in recent years and that I am the one who occasionally takes a swim. In fact, I have recently suggested that we use it more this summer. Each time I’ve mentioned it, she has balked. I don’t mean to suggest that Kate wasn’t telling the truth. She just can’t remember. In conversation, her imagination takes over.

We could have talked much longer, but I felt it was time for us to check into our hotel and have dinner. As soon as we closed the doors to our car, Kate said, “I like them.” Once again, I thought about Kate’s intuitive abilities. Kate and Ann had been very close friends. Kate can’t remember that, at least not very well, but her feelings for Ann were rekindled just by being together. I don’t think it relates to something special that Ann said to her. I think there was something Kate was able to pick up intuitively that made the difference. Once again, I am struck by the power of her intuitive thought. It has carried us a long way.

Another Good Day: Two Victories

It’s been a year and a half since I engaged the services of sitters for Kate. From the outset I was concerned about her accepting them. She surprised me by doing so immediately. She was never enthusiastic, however, just accepting. As she has become more dependent on me, she has seemed more reluctant for me to leave without her. Recently, she has enjoyed being with both sitters. That continued yesterday when Mary arrived.

When she came in, I was in the back of the house. I heard Kate greet her. A few minutes later, I walked in the family room. They were chatting. It looked just like Kate was talking with a neighbor who had dropped in to say hello. She did say, “Where are you going?” when I told her I was leaving, but she was perfectly at ease. There was no sign that she was bothered. As on several other occasions, I left feeling at ease myself.

When I walked in the house later, I heard Kate say, “Perfect timing.” It turned out that she and Mary had just returned from Panera. Kate told me they had had a good time.  I considered this another victory. It has been months since she has let the sitter take her to Panera in the afternoon. Prior to that it was a regular event. I hope this continues. Before Mary left, Kate said, “Have you ever seen her drive?” I told her I had only seen her drive in the driveway. Then she told me what a good driver Mary is. This is a consistent pattern for her. She regularly talks about well people do things. It’s one of the things I like about her.

Even after Mary was gone, she repeated they had a good time and how much she likes her. That was quite a victory. I couldn’t have had a better welcome home. I’ll feel much easier the next time I leave her. Even though I hadn’t spent much time with Kate earlier in the day, I was ready to say it was another good day. The rest of the day also went well.

Last night was pizza night. When we got home, she said, “What can I do now?” I suggested we go to the family room and that she could look at one of her family photo books, work jigsaw puzzles, or look at her “Memory Book,” the three-ring binder I had put together with information about our families and memories of our lives together. She started with the memory book while I watched the evening news. In a while, she picked up a history of her family’s church in Fort Worth. It was published in 2001 on the church’s 100th anniversary and had been a gift to her mother. It’s a book of over 200 pages with normal type (small for Kate).

As she went through it, she was thoroughly engaged although she had difficulty reading it. I was still impressed that she continued to work at it for about thirty minutes. She could not have done this before her cataract surgery. I should add that she also needed my help. I was seated on the sofa across from her. Every few minutes she would see a photo but couldn’t read the type indicating the person’s name. Sometimes she could read a heading but couldn’t read the text. She finally reached a section she wanted to read and asked me to read it for her. For another thirty minutes, I read to her. Her interest never waned, but I don’t believe it was because of the content per se. Some of the things I read were about people she didn’t know at all. There were also accounts of committees appointed to conduct a search for a new pastor or construct a new building, but it was her family’s church, the church in which she grew up. I was touched to see the pleasure she enjoyed looking through it.
That has to count as another good day.

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.

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.

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.

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.