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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.

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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.

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Anxiety Attack in the Middle of the Night

About 1:00 this morning, I heard Kate whimpering. She put her arm around me and said, “I need you.” I didn’t ask what was wrong. Although milder than what I have observed before, I recognize the symptoms now. She said, “Who are my parents?” That led to a conversation that continued for about an hour. I told her about her parents, their names, where they were from, how a Michigan girl and a Texas boy met and married. She also asked about our children. I told her a similar story about them and their children. When I finished, sometimes before I finished, she asked again. She didn’t ask, but I also told her who she and I are and about our meeting and our courtship and marriage. The more I told her, the calmer she got. At one point when I reminded her that our courtship had revolved around my work at a funeral home, she laughed. It was also clear that some of what I said jogged her memory. Finally, we both went back to sleep.

I thought that both of us might sleep a little later this morning, but it didn’t happen. I was up at 5:50. That wasn’t much of a surprise. The surprise was that Kate got up early enough to be ready for Panera about 8:00. She is doing fine. I am sure she doesn’t remember her anxiety during the night. That’s the only good thing about her memory loss.

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Our son is observing more signs of Kate’s Alzheimer’s.

It was sometime after Kate’s diagnosis that I learned what it meant to “lose one’s filter.” My own interpretation would be that people, especially those with dementia, fail to consider their audience when expressing themselves and can easily say things that might not otherwise say. I can’t say that this has been a special problem for Kate, but she is definitely more likely to express her honest thoughts now than before Alzheimer’s.

During Kevin’s visit, I have seen new evidence of not filtering what she says. Up until now, it has only been with me that she has expressed her memory problems. Yesterday she did the same in his presence. Twice she asked my name. She also asked, “Where are we?” In the afternoon, we attended a stage production of West Side Story. Before the show, she asked me someone’s name. She immediately forgot it and then asked again. This is the kind of thing about which she once would have been careful not to do in front of someone else.

During the morning, there were other signs of her Alzheimer’s. I had asked Kevin to lock his bathroom door because Kate often uses that one rather than our own. I made sure that he had clean towels and that the bathroom was in order. I had everything ready for Kate to shower in our bathroom. Kevin had breakfast and went back to take a shower. He came back to the kitchen in a few minutes and said that Kate was showering in his bathroom. We waited for her to finish. Then I went to check on the bathroom. I found that she had used both his bath and hand towels plus at least two other towels she had thrown on the floor. I was surprised because she was up so early and that she had had to enter the bathroom from Kevin’s bedroom because he had locked the bathroom door as I had suggested.

At church they served communion by intinction. For those who may be from another tradition, members of the congregation form a line and go to one of several stations where one person holds the bread and another a cup of the wine. I knew Kate would not remember what she should do and asked her to watch me. It was a little too much for her to absorb. I had to coach her quietly, and it worked out fine. It just took us longer than everyone else. I am sure the people behind us wondered about her. I am also sure that some of those are aware of her Alzheimer’s and recognized the problem. That was one of the few times she has done something in public that might cause people to suspect. That is remarkable given how long it has been since her diagnosis. She continues to get along well in public situations. That is a major factor in our ability to continue so much social activity, another thing for which I am grateful.