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Merry Christmas

It’s Christmas morning, and I am thinking about all the households with young children who have been up for hours and eagerly unwrapping packages. Those are great moments to treasure. They don’t last forever. The children often sleep a little later as they get older. Life changes for all of us as we age. We don’t celebrate the season in the same way we did when we were younger.

One thing doesn’t change. We still have our memories of Christmas. I remember getting my Red Ryder BB Rifle when I was about nine or ten years old. It’s hard for me to believe that my parents allowed me to play with it around the neighborhood at that age. I also remember being excited over the Schwinn Black Phantom I received when I was twelve or thirteen. Those were among my most special Christmas gifts as a child.

The memories of the Christmas season that mean the most to me these days are the ones that Kate and I have shared. We had our first date on December 19, 1961. We went to a performance of Handel’s Messiah. December 19, 1962, we became engaged. On Christmas day six days later, we announced our engagement to Kate’s extended family at the family Christmas gathering at Kate’s home.

Over the years, we have enjoyed the season in different ways and in different places. We spent our first Christmas together with a trip to my home in West Palm Beach. That was Kate’s first time there. We spent our only Christmas alone in Madison, Wisconsin, during my first year in graduate school at the University of Wisconsin.

I have many treasured memories of Christmas Days we spent with each of our families. Until the children were around five or six, we rotated between our parents’ homes. After that, our parents came to us. As our children graduated from college and started their own families, we followed pretty much the same custom. We were introduced to the pleasure of watching grandchildren enjoy Christmas with the excitement that is unique to children.

Kate and I also started taking vacation trips during the first or second week of December. Three or four times we have enjoyed the Christmas season in New York City. That’s my favorite time of the year to be there. We have also enjoyed Christmas season travel to London, Paris, Vienna, and several places in Germany.

This Christmas we find ourselves in a very different place. Next year we won’t travel to be with our children and their families. There is no way for me to know exactly what Kate will be like next year, but she is likely to continue her decline.

Kate no longer has the memories of Christmas that have been so special to us. I tell her about them, and she experiences momentary pleasure in being reminded. She can’t, however, retain and reflect on them. I am sad about this. I’m sad for her, and I’m sad for me; however, there is still good news. Even though her world is growing smaller, she continues to enjoy life. I know from other caregivers that moments of pleasure often continue for a long time. Whatever happens, I retain my memories of Christmas and the joy we have experienced during this season, and I am grateful.

My wish for you is that you continue to create your own Christmas memories to treasure now and for the days to come. Merry Christmas.

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Christmas Eve

We had a nice day yesterday. It matched the activity level we have at home. We got out and had good times with Jesse and her family, but we had breaks that make it easier for Kate.

She got up before 10:30. That got us off to a good start. I don’t like having to wake her. That worked well for our plans to meet Jesse, Greg, and the boys for lunch at a new diner downtown. We met them at 12:30 and had a good time as well as a good lunch. Kate got a very large Turkey Club sandwich. It was about 4” high. I thought she might have trouble getting through half of it, but she ate “the whole thing.” She did it her way starting at the top slice of bread, pulling off one layer at a time and working her way down to the bottom. She wasn’t unusually talkative, but she enjoyed herself. All of us had a good time.

It was after 2:00 before we left. Jesse asked if we wanted to go back to their house or to the hotel. I decided to go back to the hotel for a little break and join them at the house around 4:00. Breaks like that seem to work well for Kate, and Jesse needed to run some errands. I tend to think of these breaks as something solely for Kate, but I also think they are for me. When we are in social situations, I feel a bit of pressure to be attentive to her as well as to enjoy myself with those we are with.

After the break, we returned to Jesse’s house for about an hour. Once again, Kate took great interest in the house. She made the same circle from room to room that she had done the previous evening. For her, it was like the first time she had seen it. She told me that it looked “much better than when we lived here.” That was almost identical to something she had said about our own house a couple of months ago when she took an hour going through it the same way she did at Jesse’s.

As the sun began to set, we went to see the Christmas lights at a seniors nursing facility a twenty-minute drive from their house. They have a large piece of property circled with a light display that Jesse described as “tastefully tacky.” As a fund raiser, they open the yard to the public. I expected Kate enjoy it more than she did. She didn’t say much. It was certainly nothing like her reaction to the décor and Christmas decorations at Jesse’s. From there we drove back into town for dinner at a small Italian restaurant near Jesse’s home. It’s a great neighborhood restaurant. We’ve eaten there quite a few times over the years and enjoyed it. It was perfect for last night.

When we got back to Jesse’s, it was 8:00. I thought it was a good time for us to say good night. We went back to the hotel where I watched a portion of the Broncos/Raiders game while Kate worked on her iPad. She was in bed before 9:30 though she was still awake when I joined her at 10:00. It had been a nice day.

She got up at 3:00 to go to the bathroom. I had trouble getting back to sleep after that. The last time I looked at the clock it was 4:05. I made up that hour by sleeping until 6:45. Continue reading “Christmas Eve”

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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.

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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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From Clarity to Excitement to Insecurity to Enjoyment to Confusion

All of us experience moments when we are up and when we are down. Kate sometimes changes quickly from one emotion to another. She hasn’t always been like that. Alzheimer’s is the culprit. Yesterday she went through a series of emotions from the time she awoke until we had gone to bed.

When I went I to wake her, her eyes were open. She was very relaxed. She was enjoying the comfort of a warm bed on a cold morning. As I approached her, she smiled warmly. There was no sign of confusion about who I was. I told her good morning and that I love her. She smiled again and motioned with her hands that she felt the same way about me.

We didn’t have any obligations that required her to get up at that time, but I thought it would be good for her to get up for lunch and take care of a few things before Ken and Virginia arrived later in the afternoon. Often she is resistant to getting up, so I approached this cautiously. I found that for the second day in a row she was very cooperative. We were off to a good start.

Apart from her usual problem with names, Kate seemed quite normal and completely at ease. We had lunch and came back home and relaxed a while. Later we went to Barnes & Noble. Shortly after we arrived, I received a call from Sue Glenn, a childhood friend of Kate’s in Fort Worth. She was calling to check on Kate. It was just over a year ago that we had visited with her and several other high school friends when we were in Fort Worth. We hadn’t spoken with her since a phone call conversation a few weeks after that. I always wonder how Kate will handle phone calls from people she has not seen or talked with in a long time. I was very pleasantly surprised that the call could not have gone better. I told Kate who was calling and handed her the phone. Her eyes lit up immediately. There was a clear sign of recognition. She and Sue chatted almost ten minutes. Kate couldn’t say much with a lot of specifics, but she was able to convey her feelings about her past experiences. I think I derived as much pleasure listening to Kate’s side of the conversation as she enjoyed talking with Sue. I don’t often see such excitement or recognition these days.

We went back home to await a call from Virginia and Ken. After their call, I told Kate they would be coming to the house and then we would go to dinner. Coming off the phone call with Sue, I expected Kate to show a similar reaction. Instead, she felt a little uneasy. She said she was tired and didn’t feel like being with anyone. She didn’t say much more. I thought (and still think) she felt the need to be a gracious hostess and wouldn’t be able to carry it off. I assured her she always did well in social situations and would be just fine. She said, “You promise?” I said, “I promise.”

I am happy to say that I was right. She was herself, and we all had a good time. We chatted a short time before going to dinner. The dinner also went well. Ken and Virginia got a sense of why we like eating out so much. We encountered a couple of people we hadn’t seen in a good while. That added another nice touch to the evening.

Ken and Virginia went back to their hotel after dinner. When we came in the house, Kate was confused about where she should go. She wanted to go to the bathroom and asked where it is. I took her to the one she uses most. It wasn’t long before I heard a loud “Hey.” She didn’t hear me answer and asked, “Hey, where are you?” I said, “I’m in our bedroom.” She said, “Where is that?” By that time, I had walked to her. She was standing in a hallway around the corner from our bedroom. She didn’t know where to go. As I walked her to the bedroom, we passed the open door of the guest bathroom. She looked in and saw the bathroom door to the bedroom was also open. She said, “What’s that?” I told her. She said, “Oh.” Nothing seemed familiar to her.

Her confusion continued after we were in bed. She had forgotten that we are married. This was the second night in a row we have had this experience. Our conversation sounded like a couple that is dating. I said, “I love you.” She laughed and said, “We’ll see.” I said, “Well, don’t you love me?” She said, “Maybe. We’ll see.” I said, “Maybe we should make this a long-term relationship.” She said, “Let’s not talk about this right now.” It wasn’t long before she touched me. Then she touched her lips and blew me a kiss. Shortly after that she put her arm around me and we went to sleep.

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The Day After Thanksgiving

We had a good day yesterday. I can’t ever be sure exactly why some days are better than others. I believe that yesterday’s schedule was at least partially responsible. It was a day that was broken into several different segments. That is more typical of our daily routine when we are at home. It seems to be hard for Kate to do the same thing for an extended period of time. That is why we are rarely at home, Panera, or Barnes & Noble longer than two hours.

Kate was up earlier yesterday. They were still serving breakfast when we got to the dining room. They close at 10:00. We had our iPads with us and spent about an hour there before she felt tired. That is typical when she gets up earlier than usual. We came back to the room where she lay down on the sofa and napped another hour. Around the noon hour, Kevin and his family picked us up for lunch at a restaurant downtown. We followed that with a walk around the area and visited an historical site.

I was especially pleased that Kate was able to get in a little walk. Her life is very sedentary. She refuses to walk around the neighborhood or at a gym. She only walks to get from one place to another, and those are short trips. As a consequence, it is becoming more difficult for her to walk or even to get up from a seated position. She can do it herself, but she often wants to take my hand. Frequently, I put my hand under her arm and help lift her out of the car. Most of the time, she is quite accepting of that help. Other times, she refuses, saying she can do it herself.

One of the other challenges of walking involves her eyesight. I suspect it is her cataracts that present a problem. She is very sensitive to light and dark portions of the pavement as well as painted lines on the street or small pebbles in pavement of sidewalks. When we leave Panera at home, we sometimes exit by a side door that leads to wheel chair access to and from the parking lot. Although I tell her she does not need to step up or down, she is very cautious. When walking with a group as we were yesterday, it can be a challenge for others to walk as slowly as she does. Just walking across a street can take a while. As family, they were all understanding.

Kevin dropped us off at the hotel around 4:00. We had had a nice leisurely outing. Kate enjoyed herself although I would say that she was not as enthusiastic as she was six months ago when we were here. On the whole, her emotions are expressed with much less enthusiasm than in the past.

Kate and I relaxed in our hotel room for an hour and a half before we left to meet Kevin and his family for dinner at one of our favorite hamburger places. We had a good time and enjoyed our burgers. Knowing that Kate loves French fries, I got her a side order. I quickly noticed that she went for the fries before the burger. They were gone before she got down to the burger patty. I think I have mentioned before that she usually eats sandwiches including burgers in pieces. I haven’t identified a consistent pattern, but she normally takes off the top slice of bread or bun and puts it aside. Then with her hand, she picks off the individual ingredients (in this case, pickles and tomato) and eats them. I didn’t notice as she was eating but I believe the top of the bun was gone when I noticed she had eaten all the fries and had gotten down to the shredded lettuce and the patty. By then, the rest of us had finished eating. It took another ten or fifteen minutes for her to be ready.

As we walked back to our car, Kate was very cautious as we walked across the parking lot. It was lighted, but there were lots of shadows. She was concerned about possible uneven surfaces. I have heard that people with dementia often perceive patches of black to be holes and that a way to prevent walking away from home is to put a black mat in front of the doors leading to the outside. I’m not sure of the validity of this, but I wondered about that as we walked to the car. The position of the lights focused light on the front end of the cars where we had parked. This cast long shadows at the rear end of each car. I was holding Kate’s hand. As I turned to walk more directly to our car, we were about to walk into the shadow of the car next to us. Kate stopped. She looked at the shadow as if if it were a chasm. I told her it was all right, just a shadow of the car. She didn’t accept that. She pulled my hand and walked around the shadow rather than through it. Then I wondered how she would react when she noticed the shadow of our car. She ignored it completely. We walked right through it to the passenger side of the car.

She was in one of her appreciative moods as we drove back to the hotel. She thanked me for everything I do for her. This is not something that occurs everyday, but she expresses her appreciation often enough that I know she recognizes much that I do for her and is genuinely appreciative. That helps to keep me going. I know that some caregivers don’t hear such expressions as often.

Christmas music was playing in the lobby when we got back to the hotel. Kate said, “I love that.” That led me to turn on some Christmas music I have on my phone when we got to our room. We listened for an hour and a half while she worked on her iPad and I watched the Oklahoma/West Virginia football game with the sound turned down.

After a while, Kate lay down on the sofa and rested while listening to the music. I suggested that it was time for bed. She agreed but made no effort to get up. I finally got her up. In the process of getting her dressed for bed, she got irritated with me for pushing her. After we were in bed, she apologized and said, “You have to put up with so much from me.” She still seems quite perceptive in ways like this. I would love to know exactly what she notices and what she doesn’t.

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Follow up to Kevin’s Visit

As always, we had a good visit with Kevin. Except for Kate’s minor anxiety attack the other night, she enjoyed herself. She did feel tired, but that was probably related to getting up so early two of the days he was here. On a few occasions, she was more animated than normal. That was good to see except for the times when she was a little grouchy. That was only in the morning before she was fully awake.

That didn’t end when Kevin left. She’s been a little gruff with me this morning. She was in the shower by 9:00 and ready for Panera just after 10:00 and now seems to be all right. The first thing she said to me this morning was “What’s your name?” She followed that with “What’s my name?” Before we left for Panera, she asked my name again. After I told her, she said, “You’re a nice guy.” I think much of her gruffness is an attempt at humor. Mostly, she is trying to tease me, but it doesn’t come off that way. It was this behavior that led me to stop teasing her quite a while ago. There were times that I am sure that I offended her, especially early in the morning before she was wide awake. The change in my behavior worked. It’s only in the past few days that I have seen this emerge again. I unwittingly teased back. That isn’t a good thing. I will need to be more careful in the future.

That leads me to something else. Having read quite a few caregivers’ experiences, I recognize that we all make mistakes we wish we hadn’t made. I did that earlier this week but didn’t realize it until this morning. Among the potential side effects of Aricept (Donepezil) is diarrhea. To counter that I include an antidiarial with her nightly meds. I forgot to do that when I prepared her pills this week. She got by all right until this morning. Fortunately, she hadn’t developed a serious problem, but I am sure that it was unpleasant for her. She never said a word to me. I just found a few traces of the problem around the toilet this morning. She has only two medications that have noticeable effects. The other is Venlafaxine. I like to avoid these problems and feel bad when I don’t make sure she gets these meds. The good news is that missing the antidiarial was a first. There have been several times that she has missed Effexor (venlafaxine), but I have always discovered it the next time she was to take it.

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Enjoying Columbus Day With Our Son

As I mentioned in my previous post, Kate was ready for Panera unusually early yesterday. That gave us more time to spend with Kevin. We were back home shortly after 10:00. That worked well. I put in a DVD of Kate’s father’s family movies from the mid-1930s through the early 1940s. Kevin hadn’t seen most of the footage before, and Kate loved seeing them once again. She particularly liked seeing movies of her mother and father when they were so young. She also took delight in seeing herself shortly her birth up to about age 4 or 5.

After the movies, Kevin and Kate took me to my Rotary meeting, and the two of them had a nice lunch together. This is something they do on each of his visits. I think it is great for them to have that time together.

Following lunch, we went to see the documentary, Love, Gilda. Over the past year, I have had less and less luck finding a movie that Kate enjoys. This one wasn’t a winner for her. She didn’t find anything that engaged her. Her eyes were closed a good bit of the movie. I’m not sure if she was asleep, but I know she wasn’t paying attention.

We came back to the house where she rested about 45 minutes before going to dinner. We had a very good meal and shared two large desserts. It was a good way to top off the day.