Happy Moments: Part 1

Earlier this morning I mentioned that Kate was in a very good mood yesterday. That made it a good travel day. I never imagined what was in store after we arrived at Jesse’s house. The best was yet to come.

I certainly didn’t expect it as we were about to leave the hotel. She asked me where we were going. When I told her we were going to Jesse’s, she frowned. I asked what was wrong. She said, “I thought we were going to have dinner with just the two of us.” I told her I would like that too but that she would love seeing Jesse, our daughter, as well as our grandchildren, Randy and Ron. I am sure that she had forgotten that Jesse is our daughter, or she would have been more eager to go.

We ate dinner soon after getting there. Jesse, a vegetarian, had smoked a brisket on their Big Green Egg. This seems a bit ironic for a vegetarian, but her husband, Greg, travels a good bit, and her boys are meat eaters. She is accustomed to preparing non-vegetarian meals. The key, however, is that she takes great interest in entertaining and food. She cooks all kinds of things. Some time ago, she had actually talked about starting a catering service.

After our dinner, Kate started walking around the downstairs portion of the house while Jesse and Greg cleaned up the dishes. It was very much like the time she spent an hour walking around our house one night after we returned home from dinner. She asked Jesse how long they had lived in the house. Then she commented on what a nice house it is. The next thing I knew she had gone back to the dining room. She reacted as though this were the first time she had ever seen it, and we had just spent at least an hour eating and visiting in it. I walked with her as she took in all the Christmas decorations as well as the furniture and design of the house. She was amazed at what she saw and enthusiastic in her praise of Jesse’s house. I was never clear whether she realized that this was a house that Jesse and Greg had built or if she thought they were renting or had bought the house from someone else that had built it. Sometimes she said, “They really thought of everything.” Other times, she said, “The builder really thought of everything.”

Kate noticed most of the decorations, but I pointed out some that she seemed to miss. When she finished the circle from the kitchen to the dining room, to the living room, to the family room and back to the kitchen, she went around again. Each time she entered a room it was like the first time she had ever seen it. Several times she said, “I wish we had seen this house before we bought ours.” Off the kitchen there is door that leads to the laundry room and to the pantry. The door to the pantry was open enough for her to see in. The door to the pantry was closed, and she didn’t open it. She did, however, look at this area several times and called me to look. She commented on what a good job the builder had done. One time I opened the door to the pantry. That gave her something else to praise.

I don’t know how long this went on. It was quite a while, perhaps twenty or thirty minutes. She had a wonderful time. Jesse and I had just as much fun watching Kate enjoy herself. It was a surreal experience.

We left a short time later. As we backed out of Jesse’s driveway, Kate said, “That’s a beautiful house. Who is that lady?” I told her that was Jesse. She said, “She is really nice.” She asked her last name, and I told her. She asked about the man. I told her that was Greg, Jesse’s husband. Then she said, “How do we know them?” I hesitated a moment. What should I say? Then I told her that she is our daughter. She was taken aback. I immediately felt that I should have said something else. I could tell it bothered her momentarily that she hadn’t remembered that Jesse is her daughter, but it didn’t last long. That was the beginning of another story.

The Ride to Memphis

After our early morning conversation yesterday in Nashville, I got up and dressed. Over the past year, I have requested a room that is near the breakfast area. That has worked well. I went to the lobby and brought my breakfast back to the room.

After being awake three different times the night before, I thought I would have to wake Kate to get her ready for the drive to Memphis. She surprised me as she often does. She got up around 9:15, and we made it to breakfast just before they closed at 10:00. She would have gone back to bed after her shower if I hadn’t told her they were getting ready to stop serving breakfast.

I was encouraged that we would be able to leave earlier than I had expected and sent a text to Jesse telling her that we would soon leave for Memphis. Then Kate wanted to rest again. She lay down on the sofa in our room and went to sleep. I woke her at 11:30, and we left the hotel just before noon.

Kate was in a very good mood and more talkative than usual. I have often mentioned that she gives higher evaluations to theatrical and musical performances than she would have done in the past. Recently, I also mentioned that she sees more beauty in things around her. She was very charitable in her assessment of the world around her yesterday. That lasted until she was sound a sleep last night. She liked the Residence Inn in which we stayed in Nashville. She loved the trees along the highway even though many of them were now without their leaves.

She was also very adaptable. We stopped at a Wendy’s for lunch. It was a cold day. When we got inside, she immediately commented on how cold it was. We discovered that the heat had gone our earlier that morning when it had been 27 degrees. I went to the car and got our jackets. She didn’t complain at all as we ate our meal in the cold. When I got up to get ketchup for her fries, I discovered that the two containers were empty. I mentioned it to an employee who (I thought) said he would take care of it. I thought he meant he was going to refill them and went back to our table. It was probably ten minutes before I went back for the ketchup. They were still empty. I asked again. This time the guy said they were out and asked if I wanted some. I told him I did. That is when he told me that they have it in packets. Earlier he had come back to the counter with them, but I had gone back to the table. He thought I didn’t want them. At any rate, Kate never complained about not having ketchup. She was simply happy to get it when it finally arrived.

I used to talk about Kate’s déjà vu experiences. The reason I haven’t mentioned them in a while is because she stopped having them (or talking about them). They were back yesterday. We had a detour that took us completely away from the highway and through a town we had never visited before. As we drove through it, she commented on different things she remembered. There were several other places along the road that she “remembered.”

About fifty miles out from Memphis, we passed homes along both sides of the highway. She commented on how nice they looked. She noted that they were small and unpretentious but kept up very nicely. She repeated this refrain for quite a while. I failed to see the same beauty, but I enjoyed the fact that she could see it.

Throughout the trip, she frequently asked, “Where are we?” and “Why are we here?” I explained that we were on the way to Memphis to celebrate Christmas with Jesse. Each time, she wanted to know who Jesse is. I told her that she is our daughter. Sometimes she was surprised that we have a daughter. Other times she remembered. When I mentioned her family, she asked Jesse’s husband’s name. When I told her, she almost always said, “He’s a nice guy.” That was not something new. She has been saying that for a long time.

We arrived in Memphis shortly after 4:00. We took a few minutes to unload the car. Then we were off to Jesse’s. It was a good travel day.

Conversations in the Night

We didn’t have uninterrupted sleep night before last in Nashville. We got to bed around 10:00. A few minutes before midnight, Kate needed to get to the bathroom. As usual, she was confused about its location. I left the light on to make it easy, but that didn’t help at all. I helped her. When we got back in bed, she was very relaxed but talkative. She wanted to know where we were. I told her we were in Nashville. She was surprised, but that isn’t unusual. She could easily have felt the same way at home. She was not confused about who I am, however. She talked about our relationship and how fortunate we have been. She gave special attention to our children and how proud we are about both of them. I don’t know how long we (mostly Kate) talked. I suspect it was no more than fifteen or twenty minutes. At that time of the morning it seems longer. Off and on during that time, she asked me several times where we were. One time after she asked, I told her. She said, “I probably won’t remember.” I said, “That’s all right. You can ask as many times as you want.” She said, “I already forgot. Where are we?”

At 2:15, she needed to go to the bathroom again. I helped her. When she got back in bed this time, she did not remember my name or that I am her husband. Neither did she remember that we have children. She wanted to know where we were. We went through our usual question and answer conversation.

Around 6:00, she woke up and seemed quite alert. She was very talkative. Once again, she talked about our relationship, the good times we have had, her mother and father, and our children. This was a longer conversation than either of the earlier ones. The last thing I remember her saying was, “What’s your name?” This time it took me a little off guard. She had seemed so alert that I expected that it was one of those times she remembered it.

Traveling to Memphis

Yesterday we left for what I expect to be our last Christmas visit to our daughter Jesse’s house in Memphis. As with our trip to Texas in November, I wasn’t sure that we would be able to make it. About two weeks ago, I felt sure enough to make our lodging  reservations. This will be only the second time we have not stayed with her and her family. At this stage of Kate’s illness, I felt it would be better to have the privacy afforded by staying in a hotel. She can sleep as late as she wants, and we won’t have to worry about any of the mess she makes in the bathroom.

Given how late she has been sleeping, I thought I would let her sleep until 11:30, grab a quick bite to eat, and hit the road between 1:00 and 1:30. As it turned out, she woke up about 10:30. That gave us time to have lunch at the Bluefish Grill, our regular Saturday lunch place.

On several occasions, we have stopped in Nashville to have lunch with friends or visit with our friend Ellen Seacrest. She’s our friend who had a stroke while visiting her daughter in Nashville three years ago this past August. We stopped for a nice visit with her. Earlier in the week, we had seen Louise, the woman who replaced her as choir director at her church in Knoxville. When I mentioned that we were going to see her, she asked if we could take something with us. Yesterday morning she brought a gift bag with a Christmas CD, an assortment of homemade cookies, and a card with greetings and signatures of Ellen’s choir members. That made this visit very special.

Ellen had directed the choir almost forty years and contributed in many other ways to the church. She was well-known and loved. The distance has kept all of her Knoxville friends from visiting her. To the best of my knowledge, we are the only ones who have visited her more than once. Thus, Ellen was quite moved to be remembered in this way. I asked Ellen if she would like to talk with Louise. She was excited when I mentioned it. I called, and Louise answered on the first ring. That began a 10-minute phone call that was certainly the highlight of Ellen’s day. I am so glad I told Louise we were making this visit. After Christmas, I think I will talk with Ellen’s daughter and see how she would feel if we brought one or two of her closest church friends with us on a future visit. That would be quite a thrill for Ellen.

I thought it would make the trip easier if we stayed overnight in Nashville and complete the trip to Memphis today. It would also enable Kate to sleep as late as she would like without getting us to Jesse’s too late in the day. That has worked out quite well though it is increasingly difficult to travel with Kate. There is so much for me to think about and manage. Lots of things come up that would be more easily taken care of at home. I don’t intend to stop all overnight travel. I could easily see staying overnight in Nashville on other trips to see Ellen, but I don’t think we will stay away from home longer than one night in the future. I am also uncertain about how long we might do that.

Less Confusion Yesterday

I’ve been encouraged by the success we’ve had with the Monday sitter’s getting Kate up and dressed. I was prepared to try the same thing with our Wednesday and Friday sitter. That didn’t work on Wednesday because Kate was up so early. I thought yesterday might be the opportunity I was looking for, but I changed my mind (a couple of times).

I really like to have lunch with Kate before leaving, so I decided to play some soft music about 10:15. I thought that would help her wake up gently, and we could eat together before Mary arrived. At 11:15, she was still sleeping soundly. I changed my mind again. I decided it was better to let her sleep and have Mary take care of getting her up and to lunch. I walked back to the bedroom a few minutes before noon and discovered she was sitting up on the side of the bed. She wanted to shower. She was much more alert than the previous day and needed less help getting her shower though she welcomed help dressing. By the time she was ready to go it was almost 1:00. That’s the time Mary was to arrive.  I called her at 12:30 and asked that she meet us at the restaurant. That worked out well, but having the sitter with us for an hour meant I had only three hours on my own. I skipped the Y and spent about 45 minutes at Starbucks working on a book of my dad’s emails and autobiographical notes. Then I had coffee with Mark Harrington for another hour before going back home.

The good news was that meeting the sitter at the restaurant provided a smooth transition for me to let Mary take Kate back home. Kate was very receptive to that. I had set the TV for them to watch YouTube Christmas specials. They did that the whole time I was gone.

After dinner, I watched the evening news. Then I turned on a video of an old (1995) Julie Andrews concert. Kate enjoyed watching but could never remember who the singer was. I kept telling her, but she couldn’t remember, nor did she remember having seen her in person two other times. One of those times was in the summer of 2016. Last night she had no recollection at all of who Julie Andrews is.

She got up later to look for her night clothes but didn’t know where to go. I took her to the room where she keeps her clothes and got her a night gown. She wanted to use the bathroom while I returned to our bedroom. In a few minutes I heard her call, “Hey.” When I got to her, she was standing in the hallway and said, “I didn’t know where to go.” I walked ahead of her as she followed me to our bedroom. On the way, she said, “This is a nice place.” I said, “So you like it?” She said, “Yes, don’t you?” I said, “Yes, I do.”

More Signs of Memory Loss and Confusion

For quite some time I have been reporting Kate’s difficulty remembering names and places as well as her confusion. That makes it a challenge for me to convey how she is different now than in the past. Perhaps the best way is for me to say that I don’t think she is on a plateau but gradually declining with respect to both her memory and confusion. There have been two occasions in the past few days that particularly struck me. One of those occurred yesterday morning.

Although it was not a day for the sitter, I wanted her to get up before noon so that she could get ready without my rushing her. I also wanted us to have a relaxed lunch before her 2:00 appointment for a massage. About 10:00, I put on some music to help wake her. It was 10:45 before I tried to get her up. She opened her eyes when I sat down on the bed. She smiled and waved to me with her hand. I asked about her getting up for lunch. She said she didn’t want to get out of bed that she was too comfortable and relaxed. I didn’t leave her bedside. We began a conversation that was one of those I take as a sign of a new stage of her decline. Let me try to capture some of flavor of our conversation.

KATE:            What’s your name?

RICHARD:    Richard.

KATE:             No, your full name.

RICHARD:    Richard Lee Creighton.

KATE:             Say it again.

RICHARD:    Richard Lee Creighton

KATE:             Let me say it. Richard. (unable to remember the rest) What’s your name again?

RICHARD:    Richard Lee Creighton.

KATE:            What’s my name?

RICHARD:    Kate Franklin Creighton

KATE:            That sounds right. What’s your name?

RICHARD:    Richard Lee Creighton.

KATE:            Say it again slowly.

RICHARD:   Richard Lee Creighton.

KATE:            What’s my mother’s name?

RICHARD:   Elizabeth Franklin. Does that sound familiar?

KATE:            No. Did you know her?

RICHARD:    Yes, and she was a very special lady.

KATE:            (Looking surprised) Is she gone?

RICHARD:   Yes, she died 13 years ago, but she lived a long life. She was 90 when she died.

KATE:            What’s your name?

RICHARD:   Richard Lee Creighton.

KATE:            What are you to me?

RICHARD:    I am your husband.

KATE:            (Surprised) You are? What was I thinking? (joking)

RICHARD:    Yes, and we have two children. Our daughter is 50.

KATE:            How old am I?

RICHARD:    You’re 77, but you will be 78 in less than a month.

We talked like this for 15-20 minutes before I said I would be glad to help her out of bed. She didn’t want to, but she let me get her up and take her to the bathroom. While she was showering, she asked my name, her name, and the nature of our relationship. As I noted before, she asked these things without any sign that she was disturbed. She just couldn’t remember them and wanted me to tell her.

We went to lunch at Panera. While we were there she asked some of these questions again as well as “Where are we?” By the time we finished eating, she quit asking all of the questions. I don’t know that is because she remembered or she was wrapped up in her puzzles. On the way home from her massage, she called me by name.

As in one other experience like this she tended to accept that I was her husband but my telling her did not bring back any memory of that. Neither did my name. Not only that but the duration of her confusion lasted longer than usual. More subjectively, it also seems that the way she looked and expressed herself seemed like it was much harder for her to make sense of everything.

We spent two hours at home before going to jazz night at Casa Bella. During that time she seemed quite normal. She didn’t ask any names. She did ask for help with her puzzles several times.

As always, she enjoyed the evening at Casa Bella. She was somewhat more talkative and confident. When we got there, we saw the couple that we went to Flat Rock with last week. We quickly got into two separate conversations. The husband and I talked while Kate talked with his wife. I wish I could have participated in both conversations because Kate was very animated and engaged. She continued to be talkative after we got to our regular table. It was a little noisier last night, and it was harder for her to understand what people were saying. As she has done in recent situations like this, she kept asking us to repeat what we were saying. I really feel for her at times like this. She was ready to participate, but she couldn’t follow what we were talking about.

On the way home, she asked where we were going. I told her we were going to our house. She was surprised and said, “How can we do that?” I told her we were already in Knoxville. That was another surprise for her. When I asked where she thought we were, she said she didn’t have any place in mind. She was pleased to be going home. In a few minutes, she asked where we were going to stay. Again, I told her we would stay in our own home.

When we drove down our driveway, she was puzzled. Then the garage door opened, she said, “Oh, I recognize this.” Once inside she followed me back to the bedroom. She started to close the door to the family room. I told her she could leave it open, that we were the only ones here. She said, “That’s a shame.” She was looking at our house as a hotel or some other form of lodging and not our home. She wished other people could be here to enjoy it. Apart from that confusion, she seemed very normal and showed no sign that she didn’t know me.

At 6:00 this morning she got up to go to the bathroom. I went around to her side of the bed to help her as I have been doing recently. I was surprised that she didn’t sound either groggy or confused. She didn’t want my help getting out of bed or walking her to the bathroom though I did walk with her. She said, “I really didn’t need you but thank you.”

After walking back to her side of the bed, she said, “I just want to look out here a minute.” She was looking at our back yard. She said, “It’s beautiful. They’ve thought about everything.” She still thought she was staying some other place than our home. Then she got in bed. The timing of her trip to the bathroom was just right this morning. It was about two hours later than yesterday. That suits me better. I had had a good night’s sleep.

An Interesting Day

Yesterday was a good, but not typical day. Kate was up quite early. I saw a light on in the hallway outside our bedroom about 7:35. She had been to the bathroom and was looking for her clothes. This early start enabled us to get to Panera before 9:00. This was the first time we had been there in the morning in almost two weeks.

It was also a day when she drifted back and forth between knowing me as her husband and not. Soon after I saw that she was up, I said, “Happy Anniversary.” She laughed, and I reminded her it was 57 years ago that we went on our first date. She said, “Only you would remember that.” She asked my name and hers two or three times while we were at Panera. She asked rather casually without any sign that she was working to remember. She just wanted to know.

The fact she was up so early meant there was no need to let Mary get her up and dressed when she came at 1:00. We’ll wait until another time for that. Kate greeted Mary very naturally and warmly when she arrived. The only indication of concern she expressed was when I said I was going to the Y. She said, “What am I going to do?” I told her that she and Mary could watch a DVD or go to Panera. She expressed interest in a DVD. I put on Les Miserables. They were watching as I left.

When I got home, they were still watching. Kate was relieved to see me and indicated she was ready to get out of the house. After Mary left, I asked Kate if she missed me. She said yes and got tears in her eyes. We got ready to leave for dinner.

On the way to dinner and several times while at the restaurant, Kate said she was very tired and wouldn’t last long after getting home. She frequently says that and then gets her second wind after dinner. That’s what happened last night.

When we returned home, she got out of the car and asked, “Where are we going now?” I told her we were going into our house. She liked that. Once inside, she commented on how much she liked the place. After taking her seat in our bedroom, she said, “We’ve been here before, haven’t we?” I told her we had. A few minutes later she said, “What is this place?” I told her it was our house.  She said something about its being “conveniently located.” After another minute or two she said, “You’re a good traveler.” I asked what made her say that. She said, “You know how to get here.”

She was having trouble working her puzzles about 9:00. I suggested she get ready for bed. She wanted to know what she should do. I brought her night clothes to her and got her to the bathroom before she went to bed. She was a bit confused and needed my help all the way.

Just after 4:00 this morning, she wanted to go to the bathroom and asked me where it is. I got up and walked her there. She also wanted to brush her teeth and was back in bed in a few minutes. When we got back in bed, she said, “Who are you? My husband?” I said, “Yes.” She didn’t say anything more and didn’t go to sleep right away. She started running her fingers through her hair. She approaches this as though it is a chore. She evens says, “I’m working on my hair.” In a few minutes I said, “Don’t you want to go back to sleep?” She asked if I wanted her to stop. I told her she could stop if she wanted to. She said, “Oh, thank you.” with a sound of great relief. It wasn’t long, however, before she started again. She stopped a few minutes later. She was asleep when I got up at 4:50.

This is one of several times recently when she has gotten up between 4:00 and 5:00. I’m beginning to wonder if this is going to be a pattern. If so, I may need to get to bed a little earlier since it is hard for me to go back to sleep. For many years I have gotten up around 5:00, so it doesn’t bother me to get up about that time; however, I started getting up around 6:00 I when I stopped walking in the morning. To make that work I have been getting to bed later than I used to. I might need to make another adjustment.

More Success with the Sitter

About three weeks ago, we got a new sitter on Mondays. She replaced the previous one who was experiencing her own health issues. I asked the agency to send the new sitter an hour earlier on her first day so that I could get acquainted with her and give her instructions about Kate and her care. I liked her immediately. When Kate met her, she felt the same way.

I felt so comfortable with her that the following week I left before getting Kate up. That left Valorie to get her up and help her with her shower, dressing, and taking her to lunch. That has taken a big psychological load off of me. Prior to that I sometimes had to rush Kate to get up and ready for me to take her to lunch before the sitter arrived. Now I don’t have to get her up at all.

I have been surprised and pleased by the way Kate has handled this change. In fact, I don’t think she has been aware of it. That’s the sad part. On the other hand, she likes Valorie. When I told her this past Monday that I was leaving and that Valorie would help her with her shower and getting dressed, she was perfectly at ease. That makes me feel comfortable about leaving.

Now I am beginning to wonder how Kate would respond to Mary who comes on Wednesday and Friday. Would she feel as comfortable accepting her help with those same things? I think so and am willing to try it. The difference is that Mary arrives at 1:00 instead of 12:00. That means Kate is more likely to be up and showered by the time Mary arrives. Whatever the future holds, I feel good about both of our sitters.

A Day of Happy Moments

Yesterday I wrote about our finding joy while living with Alzheimer’s. I’m glad to report that we had another good day. They aren’t all that way, but the vast majority are. From the time she woke up until she went to bed, Kate was happy. She opened her eyes when I sat down on the bed beside her. She gave me a warm smile. She didn’t look at all groggy and didn’t seem at all bothered by my trying to get her up. I said, “I love you.” She touched her lips with her finger and pointed it at me to say, “I love you to.” I’m not sure if she remembered my name, but it seemed like she knew my name the entire day. She didn’t ask me one time.

We had a seniors’ Christmas lunch at our church at noon. As usual, I was concerned about having to get her up and ready so that we could be there on time. She wanted to sleep, but I told her we were going to a church luncheon. I asked if I could help her get up. She said I could and extended both her hands for me to pull her up from a lying position to sitting up on the side of the bed. It has also become common for her to ask, “What do I do now?” upon waking. I told her she could start with a shower. She held my hand while I walked her to the bathroom. She seemed especially needy and dependent all day. She asked me what to do for every step in the process of getting ready. I am amazed at how quickly she has fallen into accepting my help and that of her sitter.

I did have a surprise after she finished her shower. She was very sad. She told me that family was very important and that everyone would be there if they could. She never explained but from what she said, she thought someone had had an accident and died. In a few minutes, she had forgotten all about it.

As I helped her dress, she repeatedly thanked me for helping her. She and I both want her to do as much as she is able to do herself, but we are gradually drifting toward my doing more. For example, this morning I put her socks on her. It is really easier for me to do it than for her, and it certainly saves time when time is important.

Our lunch was served buffet style. That is a bit of a challenge for Kate. I was surprised that she served herself some salad. She hasn’t eaten a salad in a long time. I served her a piece of chicken and a slice of pizza as well as getting drinks for both of us. I cut her chicken for her after we were seated. After the meal and I had taken our plates to the trash, she pointed to the place where her plate had been and then pointed to the places of the others at the table. Each of the others was perfectly clean. Hers was covered in Oreo cookie crumbs from the crust of the piece of pie she had eaten. She smiled and then frowned. I was struck by the fact that she noticed. Because she often leaves a little mess around her plate, I had assumed that she didn’t notice. Now I know she does, at least when we are sharing a table with people we know.

I was touched by a couple of things that happened at the end of the meal. When we arrived, I had forgotten that we were meeting in a different location than usual. That meant we had to walk through the church and go down two different stairways. That required a good bit of effort for Kate. At the end of our meal, I decided I would bring the car around for her. I asked the people sitting next to me if they were going to be there for a few minutes and explained that I wanted to get the car and leave Kate at the table. They were happy to stay with her. When I started to get up, Kate wanted to go with me. They invited her to take my seat beside them and let me get the car. She consented. I am sure she got along just fine while I was gone, but when she saw me coming back to the table she beamed like a daughter seeing her mother or father after a short absence. Then the group sang a few Christmas carols. Shortly, Kate reached over and held my hand. She was definitely glad I was back.

We came back home for about an hour before going to Barnes & Noble for a full two hours. From there we went to dinner at Bonefish Grill. She never asked for my name or seemed especially confused. The exception would be when she went to the rest room. I had selected a seat so that I would be able to look straight at the place she would exit. When she came out, I started toward her. She was looking for me in several directions. When she finally saw me, she was greatly relieved. That is different from the past. On similar occasions when she hasn’t been able to find me she has been quite calm. I sense that she is becoming less secure as she becomes more dependent on me.

Once we were home, she picked up her iPad while I watched the evening news. When the news was over I turned on the latest Tabernacle Choir Christmas concert. I took my shower. When I got out, she had gone to bed. It’s too early to tell, but she may be needing more sleep now. Even though she is getting up later now, she is still getting up earlier than she wants to. Before she went to sleep, she thanked me. I told her I loved her, and she had tears in her eyes. I don’t know what brought them on. I wonder if she senses the change she is experiencing. Despite those changes, we had happy moments and enjoyed the day.

The Joy of Living with Alzheimer’s

Whenever I tell people that Kate has Alzheimer’s, I see a shocked look on their faces. Their words match their faces. All one can think about is the horror of the disease. I understand. I was in their shoes when Kate’s doctor gave us the diagnosis. That was almost eight years ago. I’ve learned a lot more about the disease during that time. I still recognize the sad aspects and never intend to deny them in my posts. They are real, and I am about to experience more of them as Kate approaches the late stages of the disease.

When I began my journal, my intent was to document our journey. I didn’t know what it would be like, but I thought there might be other people in our shoes who could benefit from our story. For me, the most important thing I have learned is that the enjoyment of life does not end with the diagnosis. Life has changed, but Kate and I continue to be active. Even now as her memory fades and confusion is common, we have many good moments.

One of the other important things I have learned is something that helps to explain why we have gotten along so well. I credit Judy Cornish and her book, The Dementia Handbook. Let me briefly summarize the point she makes for those who are not familiar with her book or my posts about it.

Cornish talks about two general categories of abilities that everyone possesses, those that are “rational” and those that are “intuitive.” Rational abilities include the kinds of things we learn in school like the names for people, places, historical events, and procedures for accomplishing specific tasks. Rational thought or abilities are very important, but not everything.

Cornish gives special attention to our intuitive abilities. These involve our ability to directly experience the world around us via our senses. Her point is that dementia has its greatest impact on our rational abilities. When people with dementia lose their memory, they lose the facts, figures, names, and procedures that they have accumulated over the years. Much of our everyday life depends on this kind of knowledge. That’s the bad news.

The good news is that much of the pleasure we enjoy in life derives from our intuitive abilities, and people with dementia retain those for a very long time, often near the end of life. This has been of critical importance to Kate and me. It has given us many happy moments.

I wish I could say that I had this knowledge or insight when we first received Kate’s diagnosis. I didn’t. I had no idea of the role her intuitive abilities would play in our lives. All I knew was that we wanted to make the best of the time we had together. We chose to do more of the things we always enjoyed. That included travel, musical and theatrical events, and being with friends. As her caregiver, I took the responsibility of organizing our lives around these things, and we have both been happy.

Over the years I have experienced a change in what gives me pleasure. It is not that I experience any less pleasure from all the other things we have done. It is that I now derive just as much pleasure from seeing Kate enjoy life. There are lots of these things that bring me pleasure. Most of them are little things that mean a lot.

One of those is her sense of beauty. She often comments about the beauty of the trees and shrubbery we see everywhere. That frequently involves the dense growth of trees and brush on our neighbor’s property behind our house. Sometimes it is driving along a highway or the streets here in Knoxville. It also includes the jigsaw puzzles she works on her iPad. She often asks me to look at puzzles she thinks are particularly beautiful or cute. The latter usually involves cats or kittens.

Kate also enjoys her family photo albums. I enjoy watching her leaf through the pages and hearing her comments as she goes through them. That is especially true of the “Big Sister” album her brother Ken made for her. She loves the cover photo of the two of them when they were about four and two. I also enjoy sitting down beside her and going through the album with her.

Recently, she has talked about the beautiful lights she sees at night. Many of these are Christmas lights, but just as often they are the headlights and taillights of the traffic we pass. Often lights obscure what would otherwise be rather mundane retail stores. The other night we walked by a wig shop that is next door to the place we get pizza. She commented on how beautiful it was. I would say it’s a pretty tacky shop in a strip center that is also tacky. It’s hard for me to see the beauty, but I enjoy seeing her enjoy simple things like this. She also takes more pleasure in sunsets than she used to.

She has always taken an interest in small children and babies. That has increased since her diagnosis. She almost always comments on the children she sees when we are out. When we are entering or leaving a restaurant as she did this past Sunday, she frequently stops to speak to a child and the child’s family. She always tells the family that they have an adorable child.

I find that she is less critical in her evaluation of musical and theatrical performances. That’s a good thing in that it enables her to enjoy performances that she might not have enjoyed as much in the past.

Last night I pulled up a series of YouTube videos of Christmas music by the Tabernacle Choir. This was one of those time she was so drawn in by the music that she put down her iPad. That doesn’t happen often. She was happy. I, too, was happy, not just because of the music, but I like to see her happy.

I am also touched when she seems to recognize me and express her appreciation. Yesterday morning she got up early to go to the bathroom. I took her and brought her back. As I pulled the covers over her, she said, “Thank you. You always know what to do.” I said, “I love you.” She said, “I love you too.” She paused and said, “What’s your name?” I found it touching that even though she couldn’t remember my name that she was still able to retain her feeling for me.

During the evening and when we went to bed, she seemed to recognize me as her husband. She didn’t ask my name except once at dinner. When we went to bed, I told her I love her. She said the same to me.

I consider all of the experiences above as good ones. They are the kind of things that make me say we have been able to live well as we live with Alzheimer’s. And all of them can be enjoyed at a time in our journey when Kate’s rational abilities are almost gone. I’m looking forward to more good times.