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Everyday Life

At Rotary yesterday, several people asked me how Kate and I are getting along. My answer is very much the same as it has been as long as I can remember. I say “remarkably well.” I believe that is just as true as it was when I adopted that as my standard answer. Recently, I have modified it slightly to say that over the past few months she has declined more significantly than in the past. Depending on the situation and the person I am talking to, I may say something like “She is now having trouble remembering my name as well as her own.” Then I add that we continue to be active and are enjoying ourselves. I think that is a reasonable summary of where we are right now. It just doesn’t fill in the details of what is going on. I try to do that in this blog.

I think yesterday presents a good picture of our daily lives. It was our day for the sitter, and Kate slept later than I would like in order for me to take her to lunch before the sitter arrived. I tried to get her up at 9:30. She seemed very tired, but she was ready for lunch around 10:45. That made it easy for her to have her lunch and get back home. She was neither very cheerful nor grumpy and not very talkative. Shortly after sitting down at our table, she asked my name. I told her. Then she said, “Wait, a minute. Say it again.” I did. She repeated it. Not five minutes later, she asked again. I told her. Over the course of the next few minutes, she asked another two times.

I told her that I would be going to Rotary and that Marilyn would be with her while I was gone. She asked me several times in a row to repeat Marilyn’s name. She wanted to know her first and last name. She was never able to remember it, but she did not express any concern about not being able to remember or the fact that I would be leaving her. Marilyn was already there when we drove up. Kate greeted her cheerfully. We chatted a few minutes. Then I told Kate I was going and would be back later. She asked what she could do. I told her she could stay at home and work on her iPad, talk with Marilyn, or look at some of her photo albums. I also mentioned Panera. That seemed to interest her. When I said goodbye, Kate gave me a dirty look.

When I got home, they were in the family room where Kate was working on her iPad. Marilyn said they did not go to Panera. She mentioned that they looked at the photo book Kate’s brother had made for her and that Kate had also taken a nap. After Marilyn left, I walked over to where Kate was seated. She said, “I’m glad you’re back.” I said, “I’m glad to be back. I like being with you.” She said, “I like being with you.” She placed emphasis on “you” as if to say “and not the sitter.” I said something about Marilyn’s being nice. She said, “She’s all right.” I didn’t pursue the discussion. I think we’ll just have to live with this a while.

The highlight of our day occurred later that evening. I should point out that our time together late in the day until we go to bed seems to be the most consistently good time we have. That may relate to the fact that I am more relaxed. By that time our routine is consistent, and I don’t have to think too much about entertaining her. We have a pleasant dinner. We come back to the house where I usually watch the news while she works on her iPad. Then I put on a DVD of a musical or something similar. Last night, I decided to go to YouTube for some of their musical performances. That turned out to be a real winner. Kate loved it. When I decided it was time for us to call it a night, she said, “It’s been a great day” several times. I also thought we had been well-entertained, but I especially liked seeing Kate’s response. We sampled an assortment of music and performers starting with the video of Kevin Spacey and Billy Joel and “The Piano Man” that I had played for Ellen on Sunday. Then I played about thirty minutes of Andrea Bocelli followed by The Three Tenors (Pavarotti, Domingo, and Carrera).

Kate’s confusion seems to be getting worse. That was expressed in a number of ways yesterday. As we prepared for bed, Kate said, “Where are we exactly right now?” At first, I said Knoxville, but she wanted a more specific answer. I told her we were in our house. She reacted with surprise. She seems to be putting more emphasis on knowing where we are now. She has asked that a long time, but it seems to be more frequent now. I can tell by other things she says that she often thinks we are out of town. At dinner last night, she said, “Are we in Fort Worth?” I mention this as another illustration that she is frequently confused, but it doesn’t keep us from experiencing enjoying life. We’re getting along “remarkably well.”

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Sunday in Nashville

After leaving Ellen Saturday afternoon, we had dinner and then went to our hotel for the night. Normally, we drive back to Knoxville on the same day, but my longtime friend from, West Palm Beach, Gary Dinkins, and his wife, Jeanette, were in Nashville for Gary’s brother’s 80th birthday. We stayed over a night so that we could have lunch with them.

Kate was tired after the day’s activity and was in bed early. She also slept late. I’m not sure how long she might have slept had I not awakened her around 10:00. Like the previous day, she was a little sluggish getting up. I let her rest another thirty minutes before getting her up.

As with everyone we get together with, she had to ask me Gary and Jeanette’s names several times on the way to meet them. She had done the same thing with Ellen. In fact, after spending 90 minutes with her, she said with surprise, “That was Ellen.” as we walked away from her. I don’t know at what point she forgot who we were with. I know that she was aware at some points during our visit because of the things we talked about. There were references to Ellen’s father and children and several friends. Kate gave no sign of wonder as to who we were visiting.

The visit with Gary and Jeanette went very well. I always wonder how she will do in different social situations. I’m not sure why I wonder. She handled herself quite well. She connects very well with both of them. She was at ease from the beginning and was an active participant in our conversation. Gary and I go back a long way. We knew each other as far back as junior high school and were roommates at TCU our freshman year. We don’t lack for things to say. Kate picked up on that. Several times she had side conversations with Jeanette. I could tell she was talking about our “gift of gab.” That’s a kind way of saying we talk too much. Despite that, she truly enjoyed herself. It was obvious to me while we were together, and she specifically mentioned having had a good time as we walked to our car. That meant as much to me as my own personal pleasure.

We topped off the day with a nice phone call from our daughter Jesse. We always enjoy catching up with her and her boys. Our conversation was a particularly nice one. It’s great to say that we had another good day.

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Adapting to Change

None of us escapes change. It’s all around us. For those of us living with Alzheimer’s it’s the same. The difference is the source of those changes. In our case, it’s the plaque and tangles that keep growing inside the brain. We’ve learned to expect some changes. Others are unexpected. Regardless, we adapt.

Our weekend trip to Nashville causes me to reflect on a minor change that I experienced in connection with travel. By itself, it is really unimportant, but it is illustrative of the required adjustments that we continually face. It relates to my personal morning routine.

I have always gotten up earlier than Kate. I also like to eat breakfast shortly afterwards. It had been my custom to get up, shave, dress, and go to breakfast while she slept. I have followed this same routine when we are traveling. In the rare event that she woke up before my return (I’m not aware that it ever happened), she understood where I was and didn’t worry. I felt there was no reason to hurry, so I left with my computer or iPad and took my time getting back to the room. Later on, I began to be concerned that she wouldn’t remember where I was. I started leaving a sign that said I was at breakfast and would be back soon. In addition, I took the words “back soon” seriously and didn’t stay any longer than necessary to eat breakfast. I ate quickly and went back to the room. When we are in Lubbock we stay in a Residence Inn where they have a buffet. I request a room on the first floor so that I can get to breakfast and back easily and also take something for Kate. That has worked well for quite a while.

Saturday night in Nashville we stayed in a Marriott and were on the fourth floor. My concern about leaving her has increased significantly during the past few months. Before making the trip, I decided that I would request room service so that I didn’t have to leave her at all. For me, that represents quite a change. Eating breakfast in the semi-darkness of a hotel room is not my idea of the best way to enjoy breakfast. The only other time I recall ordering room service was in 1976 when our family was in Medellin, Colombia. Our children were 7 and 5 at the time, and I am sure that was motivated by convenience.

As I look ahead, I believe our travel is coming to an end. We do have a trip scheduled for Thanksgiving with our son and his family. In that case, our room is likely to be on the first floor again. That should enable me to slip to the buffet and bring breakfast back to the room.

This is hardly the most serious problem involved in our travel. lf it were, I would happily go without breakfast at all (if necessary, of course <g>). The most serious issue is losing her. That has happened several times. Another is getting through airports. Going through security is more challenging. Use of restrooms is another. Regardless of how serious the potential problem, each one requires changes from the way we used to do things.

As I mentioned at the beginning of this post, much in life is changing, and all of us are adapting. There is a significant difference in caring for someone with dementia, and I am reminded of the words of the serenity prayer. “God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.” As caregivers, we cannot change many of the things we face. That leaves us only one option. We must do the changing ourselves. Those for whom we care cannot.

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Our Visit With Ellen

Yesterday was one of those days when Kate slept late. I tried to get her up around 10:00, but she wanted to sleep a little longer. I tried again at 10:30 and was successful.

When we got to Ellen’s memory care facility, she was in bed. She woke up quickly and was surprised to see us. That has been true the past four or five times we have visited her. Although she has been in memory care for at least two years, that is the only significant sign of her memory problem I have noticed. I know that her daughter tells her that we are coming. Ellen simply can’t remember. This is another reminder of how difficult it is for someone who is not around all the time to detect memory issues. To me, this has to be one of the biggest differences in caring for a parent and a spouse. It is much easier to see the signs of dementia for a spouse than for a parent. I was living in the same town as my mother and visiting her regularly and missed the earliest signs.

Having said that, I do notice more change in Ellen with each visit. At first, it was just the her speech. On subsequent visits her aphasia lessened so that we could understand about 60-70% of what she said. We found that challenging. Now we only understand about a third of what she says. That makes conversation even harder. It requires Ellen to repeat things a lot. For us, it means asking a lot of “yes/no” questions for clarification. Fortunately, she seems to understand everything we say. She clearly knows who we are, and she recognizes the names of mutual friends and acquaintances we mention. In fact, her understanding is so good that she seems misplaced in memory care. I don’t mean that she really is, just that it seems that way to casual observers like us.

It was a beautiful day yesterday. For the first time, we visited her on a back porch. We had been there about thirty minutes when Kate said she needed a restroom. I located an attendant who took her. This was the first time I had been alone with Ellen since her stroke over three years ago. For that reason, I have never said anything to her about Kate and how she is doing. After Kate left, Ellen put her hand on my knee and said, “How do you do it?” I was taken aback by her asking, but I answered, “With pleasure.” In the few moments we had, I explained how fortunate we had been and that even with her severe loss of memory, we are still enjoying ourselves. I also told her that we are going through big changes and that she sometimes doesn’t know me or herself. She didn’t ask any more questions before Kate was back.

As I have done on two previous visits, I brought my iPad and played about 30-40 minutes of music on YouTube. We started with “The Piano Man” with Billy Joel and Kevin Spacey at the Gershwin Award and followed that with a beautiful performance of “Don’t Cry for me Argentina” sung by Andrea Bocelli and Nicole Scherzinger. From there we went to several different choral works before it was time to leave.

This time it seemed much harder for Ellen to see us leave. I felt almost the way I did recently when I left Kate with a sitter. I know this was difficult for Ellen because we are about the only people from Knoxville that have been able to visit with her. I know of one other couple who were her neighbors. They have visited her once. I think one or two others from her church may have visited her the first year. This seems tragic to me. Ellen was very well known and liked in Knoxville and is a people person. For her to be in a memory care facility with few others with whom she can communicate must be depressing. I told her we would be back and that we would keep coming as long as we can.

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The Rest of the Story

Kate got up about 45 minutes after her confusion reported in my previous post. I am especially glad to report that she did not show any of the previous confusion. She didn’t ask my name or who I am. She was a little bit grumpy until we got to lunch. It was one of our days for a sitter, so I left for the Y about thirty minutes after we returned home. When I said goodbye, Kate looked a little disappointed and asked what she could do. I told her she and Mary could go to Panera or stay at home where she could work on her iPad. She said she would like to start by staying at home.

When I returned four hours later, Kate and Mary were in the family room. Kate was sleeping on the sofa. Mary said they had stayed at home the entire time. She said they had talked a little while, and Kate rested off and on. I was disappointed they had not gotten to Panera. I continue to think she feels more comfortable getting out with me than the sitter. I thought Kate would wake up when we were talking, but she didn’t. After I brought in a few things from the grocery, I went over to her. She opened her eyes. I asked if she would like to get up. She said she wanted to rest a little longer. After another thirty minutes, I asked if she would like to get a pizza. She did.

After dinner, I watched the news while she worked on her iPad. Then I played a portion of a DVD of My Fair Lady. She continued working on her iPad but seemed to enjoy the music. She went to bed shortly after 8:30. I was surprised after she had such a good rest during the afternoon.

It is now 9:00. She is still sleeping. We are going to Nashville today to visit our friend, Ellen Seacrest. She is in a memory care facility and has been declining very gradually over the past three years. Her most notable problem is her speech. It has been increasingly difficult to understand her. The last two times we have brought music into our visits. She responds positively to that. I may try that again this afternoon.

This time we are staying over night so that we can have lunch with a longtime friend from West Palm Beach. He is in Nashville for his brother’s 80th birthday celebration tonight. After our lunch, we’ll return to Knoxville. It should be a good weekend.

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Morning Confusion

About fifteen minutes ago, I thought I heard Kate and went to the bedroom to check on her. She was still in bed but awake and saw me as I walked in. She had a puzzled, even a bit fearful, look on her face. I sat down beside her on the bed. She said, “Where am I?” I told her she was in bed in our home. Then she asked, “Who are you?” Sometimes she asks and really means, “What is your name?” This time I sensed that she really didn’t recognize me. I told her my name and that I am her husband. She looked shocked. She said, “I don’t even know who I am?”

I told her I could help her. I told her that she was from Fort Worth and that her parents were Elizabeth and Charles Franklin. This was unlike other situations in which she was confused in that nothing I said seemed to make sense to her or to jog her memory. I continued to talk about family. I mentioned our children and a grandson who is now a student at TCU. The only thing that drew a spark of recognition was the mention of a couple of her aunts and one cousin. Her response seemed like something you might see in a movie when someone with amnesia is told about her life and doesn’t remember it. She didn’t say, but I imagined that Kate was thinking, “What’s wrong with me? I don’t remember any of these things.”

I asked if she wanted to get up and take a shower or to rest a little longer. She chose to rest. I told her I would come back to check on her. She said, “Please do.” Despite the fact that she didn’t know me, she seemed to trust what I was telling her. I believe that is another illustration of the power of her intuitive abilities as opposed to the rational ones she has lost. I am glad about that.

As with other signs along the way, I believe her not knowing any of her loved ones this morning is something that will not be true when she gets up or tomorrow. I do believe, however, that it is a sign of things to come.

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Very Chatty in the Afternoon

Yesterday afternoon, Kate took a nap and slept almost two hours. I think she was catching up for lost sleep over the past few days. She was definitely wide awake when she got up. We decided to go to Panera. In the car she said something about being very independent. We didn’t get very far before she recanted and said, “Well, you do drive me places, and shop for groceries, and take me out to eat, and take me to far away places.” When she finished her list, she said, “And, I don’t even know your name.” I told her. Then she said, “I knew that. It just wouldn’t come to me.” I said, “That happens sometimes.” I was interested that this occurred without her showing any signs of concern, anxiety, or fear.

When we got out of the car, she asked, “Did you know my mother?” I told her I did. Then she said, “What is her name?” I told her her, and she said, “You got it.” Once inside, I opened my iPad to write another post about a conversation we had had at lunch. Before I wrote anything, she asked me how many children her father’s parents had. When I told her, she wanted to know who they were. I went down the list of the 8 children who had lived. The first died in infancy. She began to reflect on all her aunts and uncles. That began a conversation (with her doing most of the talking) that continued for almost fifty minutes. It was interesting because she really couldn’t remember any specific facts, but she could remember qualities about them, at least how she remembered them. My only part in the conversation was answering her questions and agreeing with her memories.

In the course of our conversation she periodically said, “That goes in the book.” This is a photo book that she started to work on 5-7 years ago. For a couple of years, she edited photos on her computer, but she never got around to assembling them into a book. About three years ago, she stopped using the computer. She never said, but I think it just got too difficult for her. Her intention to create the book never ceased and continues to this day.

This time she talked more earnestly about the book. She noted that she had said she was going to write the book before. Then she said, “This time I’m going to do it.” She paused a moment and added, “And you’re going to help me do it.” I know it will never happen, but I believe it is good for her to have something for which she can aspire.

We finished the day with an evening of jazz at Casa Bella. It was an especially good evening. The vocalist is a member of our church, and we saw several other church members there. Kate didn’t participate much in the conversation at our table, but she enjoyed the music.

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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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Changes Abound

After a rough start yesterday morning, we had another pleasant day with Kevin. Kate was a little harder to wake. That may have been a result of her getting up early two days in a row. When she did get up, she was a bit grumpy. She seemed more herself at lunch, but when we got home she was tired. I made a trip to the bank. When I returned, I suggested that we watch a little of Les Miserables. I was hoping that might perk her up. It didn’t work. That was the first time I had seen her react with so little interest. She finally got in bed, and I turned it off. That gave us another thirty minutes to get ready to leave for dinner.

The highlight of the day was having a birthday dinner with friends from church. One of them had been involved with the youth program when Kevin was in high school. He has kept up with her over the years. We have gotten together with her and her husband several other times when Kevin has been with us. We had lots of laughs and good conversation. Kate felt very comfortable and participated in the conversation to the extent possible. Several times she had to ask us who or what we were talking about. It is very difficult for her to follow conversations as they flow quickly from one person to another. I was glad to see her asking for us to clarify things. That is something I have never her seen her do with the people we sit with at Casa Bella on our music nights. There she remains silent and never understands what we were talking about.

As she changes, I am adapting as well. Knowing that she might wake up and not realize where she is, I started leaving the doors open into the family room. Previously, I have been sensitive to waking her and tried to minimize any noise and light from disturbing her. Now I believe it is more important for her to hear me and know where to find me. I am also going to be checking on her more frequently. I’ve also thought about putting a monitor in her room connected to a speaker in the kitchen so that I might hear her more easily if she should call me. It’s not that I have tried to pay close attention to her in the past. It’s just that I feel a need to increase the attention as her memory gets worse.

Over the past week or so, she has become even more dependent on me to help with her clothes. For the past four or five days, I have been getting her clothes out for her and sometimes helping her put them on. One of her biggest problems is remembering where her clothes are. I put them on the chair beside her bed. That is what she had been doing before I took over.

Sometimes she doesn’t notice them at all. More frequently, she sees them but moves them to a different place and often separates them. Then I have to help her find them. When she can’t find then, and I am not there, she goes to the drawers in my bedside table and/or to my closet where she gets into a variety of my things. I may have mentioned that the other day she had put on a pair of my winter pajama pants and was going to wear them instead of the ones I picked out for her. I came in after she had them on and showed her the ones I had chosen.

I see significant changes that sadden me. At the same time, I am glad that we have so many happy moments. I know there are more sad ones coming. We are both adapting. I am glad to say that I am not yet overwhelmed by the changing responsibilities, but I know I will need to have extra help at some point. That may come sooner than I would like.

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Confusion/Anxiety

I checked on Kate about 9:30. She was still in bed, but awake, and looking a little confused. I walked over to her and ask if she were getting up. She said, “I don’t know.” I could tell by the tone of her voice that she was confused. She seemed a bit calm, but she was similar to other times she has had an anxiety attack. I got into bed with her and asked if I could hold her. She nodded but didn’t say anything. I told her my name, that I was her husband, and would take care of her. I also said, “You are Kate Creighton. You and I have been married 55 years.” Not wanting to overwhelm her, in bits and pieces I also told her the names of her parents, her brother, and our children. I also mentioned our courtship and my working at the funeral home. Nothing clicked. Periodically, she asked my name and hers.

Then I put on some soft music. She said, “I like the music.” She didn’t say anything more and went back to sleep. I got out of the bed and told her that I would be back in a few minutes. I let Kevin know that I was going to be with her a while longer. It is approaching 10:30. She seems to be sleeping soundly. I have turned up the volume on the music. I’ll give her a little more time to sleep. Then I will see if I can gently wake her up.