Posted on

Troublesome Moments

Kate does an incredible job maintaining her cheerful outlook most of the time. She does so even when she recognizes that her memory is poor and that she needs help with many of her daily activities. There have been only a handful of moments when she seemed troubled, afraid, or anxious. At least two, perhaps three, of those occurred last summer or fall. During the first two, she was able to express her feelings of concern about not knowing who she is and where she was. There have been a couple since that time when she was unable or unwilling to explain why she seemed so troubled. In each case, I focused on trying to comfort her. That worked.

She had a similar, though less intense, experience yesterday morning. At 7:30, I noticed that she had gotten out of bed and was entering the bathroom. I waited until she come out and went to her. When I reached her, I was looking for that smile I mentioned in a post yesterday. She wasn’t smiling. Instead, she looked very puzzled. I sensed this was another moment that might be an anxiety attack. I walked over to her. She said, “What now?” I put my arms around her and said, “Right now, I just want to hold you.” We held each other tightly for a moment before I suggested we go over to the bed.

At first, I thought I would help her into bed and try to comfort her as I sat beside her. I had a second thought and said, “Would you like me to get in bed with you?” She said she would like that. I took my shoes off and, fully clothed, got into bed. I asked if she could tell me what was troubling her. She said, “I don’t know.” I said, “That’s all right. The important thing is that we are together.” She agreed. Neither of us said a word for another thirty minutes before she fell asleep. Not wanting to wake her, I stayed with her another ten minutes. She opened her eyes as I started to get out of bed. I said, “I’m going to the kitchen. I’ll be there if you need me.” She smiled and closed her eyes. The crisis had passed.

This experience is another example of how well Kate’s intuitive abilities are working. It makes me think of two things. First, countering her feelings of anxiety or fear with a response that engenders comfort and security is the best approach.  Before Alzheimer’s entered our lives, I would have have asked what was troubling her, and she would have been able to give me an answer. We would have talked about it. I would have tried to think of a rational way to address the problem. In this case, she couldn’t explain what was wrong, and I have learned that it doesn’t work to try to “fix things.” I am reasonably sure that this moment was like the others. She couldn’t understand anything – who she is, where she was, or what was happening to her. Telling her she has Alzheimer’s didn’t seem like the right thing. The only thing to do was comfort her. My words were of little importance. I only had to be with her. Once again that worked.

I believe there is something else that is relevant. In another post yesterday, I mentioned that she is still able to learn some things intuitively. That seems to be happening with our relationship. She is increasingly dependent on me and is aware of it. In recent months, she has been especially appreciative of things I do. Some of this comes immediately following something specific I have done. Other times, it comes out of the blue. She says things like, “I’m glad I’m with you. I couldn’t find my way home.” She also says, “When I am with you, I feel safe.” I don’t think that arises from any special fear of others. I think she may be afraid when she doesn’t know the people around her or where she is. I’ve become a “security blanket” for her. I think that is one of the reasons she sometimes wants me to stay with her and the sitter. She is comfortable with them, but the amount of time and range of experiences she has with them can’t lead to the same feeling of security. Of course, all husbands and wives develop a certain amount of interdependence, but I am talking about a feeling that goes well beyond the way she felt before Alzheimer’s. This feeling has increased with her dependence, and, up to now, has helped to ease her anxiety and/or fear in moments like yesterday.

How long will this feeling that I can offer her security last? I hope forever. That reminds me of a quote of Maya Angelou’s that I posted recently. It seems even more appropriate to me now.

“. . . People will never forget how you made them feel.”

Posted on

What a Difference a Smile Makes

Several times I’ve mentioned Kate’s smiling as I enter the bedroom to check on her in the morning. I love that smile. It reminds me of those days before Alzheimer’s. Even now as I understand that the smile doesn’t mean that she remembers my name or that I am her husband, her smile gives me a good feeling. I think “What a great way to start the day.”

It’s not always that way. Take yesterday for example. She wasn’t smiling. Instead, she looked as though she wished I hadn’t come in. Now that I am more aware of her ability to learn intuitively, I suspect she knows that when I walk in, I am probably there to get her up. Yesterday she told me she wanted to stay in bed a little longer, perhaps a lot longer. So it is understandable that she didn’t smile. It was only when I told her Mary, our sitter, was coming and that I hoped I could take her to lunch that she decided to get up. As usual, she was appreciative and thanked me for helping her get to the bathroom and dressing, but she expressed her independence and was irritated at my attempt to help.

She joked with me as we prepared to leave the house. It was one of those times when her jokes had a little bite to them and, of course, at my expense. I didn’t joke with her. Kate has never been one to joke. I have often joked with her. Like all jokers, I sometimes go too far. A year or two ago, I felt our joking with each other was getting out of hand. I stopped. I started responding more lovingly all the time even when she joked with me. I think that had a great impact. She still likes to kid me, but it seems less bitter.

She didn’t say much as we drove to lunch. As I helped her out of the car, she said, “I love you.” For the balance of the day, she was just fine. When we went to bed, she said, “It’s been a wonderful day.” I agreed. I like her smiles. Even when she doesn’t begin with a smile, she ends with one.

Posted on

A Thought about Dementia and Learning

I doubt that I am the only caregiver who frequently tries to teach something to his love one. One of the things caregivers are told is to accept the fact that people with dementia lose their rational abilities. That makes it difficult to remember names, facts, and procedures. That’s hard for caregivers to get that through our heads. Ultimately, I suspect that most of us do give up trying, but that can take a while. I think I am there now; however, there are some kind of situations in which I can’t resist. One of those involves Kate and her puzzles.

She has been working jigsaw puzzles on her iPad as much as six to eight hours a day for several years. In the past few months she has begun to have trouble. Sometimes she forgets what to do after finishing one puzzle or to begin a new one. Sometimes she looks at the scattered puzzle pieces and can’t remember what to do with them. When this happens, she asks for my help. Occasionally, she wants me to put the pieces in place for her. Most often, she wants me to solve the problem for her. That usually means getting her out of the store to buy more puzzles or to bring up the next one. Sometimes she wants help completing a puzzle. When this happens, I find myself giving her instructions. For example, I suggest that she locate the pieces that go along each border. That is difficult for her. To help I tell her to look for the pieces that have flat sides. When I do this, I am trying to teach her. So far, I have had zero success. This makes me feel that she can’t learn, but I was wrong. Here’s how I discovered that.

I’ve been putting drops in Kate’s eyes for the past three weeks. The first week or so Kate was frightened by my doing this. She frequently closed her eyes right before a drop went in her eye. After a successful drop, she usually said, “That wasn’t bad.” Other than those words, she had virtually no response to the actual drops. It was the anticipation that troubled her. I was beginning to dread giving her drops another few weeks when she stopped being afraid. Now when I tell her it’s time for her eye drops she isn’t afraid at all. She has obviously learned that it is nothing to be afraid of.

This does not appear to be tapping into her rational thought processes but her intuitive ones. I say that because she almost always forgets that she takes drops. When I tell her it’s time for her drops, she either asks why or puts our her hand for me to place a pill in it. She still doesn’t remember that she has had the surgery, and I have told her almost every time I have given her drops. This confirms the fact that she can’t learn what requires rational thought or ability, but she can learn things that depend on her intuitive thought or ability.

As I reflect a little more, I believe those who work with larger numbers of residents in skilled nursing and memory care facilities could tell many stories that illustrate this kind of learning. Having spent a good amount of time with my dad during his last 3 ½ years in a skilled nursing facility, I am well aware that there are many routines in places like that. There are regular eating times, times for activities, ice cream treats, and meds. Most residents fall into those routines quite easily.

I hadn’t really thought much about this before. Recognizing it strengthens my belief in the value of music and photo albums for Kate. It makes me think even more about the power of our relationship. I am only now beginning to fully appreciate what we have created together. I’ll give an example of that in another post.

Posted on

A Day of Rest

Normally, I have sitters for Kate Monday, Wednesday, and Friday afternoons. Yesterday was a rare exception. I had an early luncheon meeting across town and arranged for our Monday sitter, Cindy, to stay with Kate from 10:00 to 2:00. I knew when I made the arrangements that Kate might be sleeping when I left, but I hoped she might at least be ready to get up. As it turned out, she was not.

When Cindy arrived, I took her into our bedroom and told Kate that she would be there to help her with anything she needed. I pointed out Kate’s clothes to Cindy and started to leave. She asked if she should try to get Kate up. I told her that she had been up very early yesterday but that she should try to get her up at 11:30.

After my luncheon at 1:00, I checked the video cam and noticed that Kate was not up. When I arrived home, I discovered that Cindy had tried to interest her in getting up at 11:30 and again at 1:00. Neither time did Kate want to get up.

When I went to the bedroom, I found that Kate was awake but still in bed. She was quite relaxed and smiled as I came in the room. I walked over to the bed and asked if she would like to get up. At first, she said she didn’t. Then I told her it was getting late and I thought it would be good for her to get up and get a shower. She agreed and got up without a problem.

I was disappointed that she hadn’t gotten up for Cindy. My suspicion is that she didn’t remember her and, thus, did not feel comfortable getting up for her. I think she felt secure staying in bed the whole four hours. Knowing her memory is so short, I know that she couldn’t have remembered that Cindy was there or that I was gone. I imagine it was one of those moments of confusion for her, and she didn’t know what to do except stay right where she was.

She seemed to recognize me from the time I walked in. She didn’t ask my name or how we were related at all. When she was dressed, she was ready to eat. That was no surprise. By then, it was 3:00. I took her to Panera for a muffin and half a sandwich. She was very cheerful and talkative when we entered the restaurant. I don’t remember doing this before, but we both walked to the counter where I placed our order. I said hello to the young woman employee. Kate said, “My name is Kate, and this is my uncle.” I said, “Are you sure?” She said, “You are, aren’t you?” I told her I was her husband. Then she said, “If you say so.” She left to get her drink. Then I asked the woman who is a new staff member if she knew that Kate has Alzheimer’s. She didn’t. I didn’t have to go any further she understood the situation.

I was eager to see if she had picked out a table and, if so, which one she chose. She never remembers the two tables where we typically sit. When I reached her, she was standing at a table where a young man was working on his laptop. She was talking with him. When she saw me, she said to the man, “This is my uncle.” I didn’t contradict her. I began to open the puzzle app on her iPad and place on the table across from the man. She continued talking with him. He was trying to ignore her. He kept on working. We left after forty minutes for her to get her hair shampooed. This was the first time I have taken her just for a shampoo. I did so because I don’t think she is shampooing regularly at home. As we were walking out, she stopped to talk to a young boy about seven or eight who was seated across the table from a man I believe was his tutor. The boy’s backpack was sitting on a chair between the two of them. Kate thought the backpack was a baby and asked the boy if that was his brother. They quickly cleared up the mistake. The man was black and the boy white. Then Kate looked at the man and said, “You must be his mother.” Of course, the man said he wasn’t. Before we walked away, I pulled out one of “My wife has Alzheimer’s” cards and slipped to him.

From there we went to the hair salon. When Kate was finished, she walked to the front with her stylist and said, “She’s really good.” Then she looked at the stylist and said, “What’s your name?” She told her, Kate repeated it. Then she asked her again. After that she said, “You may have to tell me again.” The stylist has long known about Kate’s Alzheimer’s and handled the situation perfectly.

We had a nice dinner experience at Casa Bella. This wasn’t a music night for us. We sat in the front section where we have eaten for years until they started having music nights on Thursdays. We’ve been eating there for almost forty-seven years, but she forgot the name of the restaurant sometime during the past year. Last night she probably asked the “name of this place” seven or eight times.

She talked a good bit about feeling glad to be with me. She specifically mentioned that she wouldn’t know how to get home. I discovered in the process that she was interested in knowing the name of the restaurant in case she were to get lost. She would be able to tell someone where she had been.

Soon after we had ordered, she wanted to go to the restroom. I took her and waited outside the door for her. I told her not to lock the door that I would make sure no one else went in. When we returned to the table, she thanked me and said she would never have been able to find her way back. It’s only when she says things like this that I get a grasp of the fact that she still recognizes her own disabilities.

Near the end of our meal, a couple we know from Broadway nights were seated in the booth next to us. We had a nice conversation with them for a few minutes. It was another of those brief social encounters that enrich so many of our meal times.

Off and on throughout dinner, Kate said she was tired and wanted to get to bed early. She often says this but doesn’t follow through when we get home. As usual, she worked on her iPad for a while but was tired and called it a day shortly after 8:00. That is at least an hour earlier than normal. She was still awake when I got in bed at 9:45. It was a very short day for her but a happy one.

Posted on

A Note on Conversations

One of the things that caregivers of spouses say they miss most is everyday conversations with their loved ones. I understand that. Even in the early years after Kate’s diagnosis, conversation became more difficult. That’s because so much of our conversation involved specific pieces of information about other family members, friends, events, and other personal experiences we had shared recently and in the past. Because of her memory loss, Kate had less to talk about. One additional problem was how much more slowly she could process what I said. It required my repeating almost everything. I suspect that extra effort may have led to my talking less.

As recently as a year ago, I would have thought we might not have conversations at all. The truth is that we spent a lot of our time together in silence. Since then Kate has talked considerably more than she did before. That is closely linked to the time she stopped taking Trazadone. So many changes take place over the course of this disease, I can’t be sure that the change in her medication is responsible for her talking more. It does remain a possibility. I can say that her talking more has significantly changed the quality of our lives, and I am grateful for that.

There is another possible explanation for the increase in her talking. It was shortly after eliminating Trazadone that I read The Dementia Handbook in which the author, Judy Cornish, presents her ideas about rational and intuitive thought processes. She argues that caregivers need to focus on what people with dementia can do (things that involve intuitive abilities) rather than worrying about what they can’t do (things that involve their rational abilities). If you are a regular follower of this blog, you are well aware this has had a big impact on the way I approach caregiving. It helped me understand why Kate and I have gotten along so well. We had followed her advice without even knowing about it.

Once I became aware of her ideas, I began to apply them with greater intentionality. Now, I look at almost everything she and I do with a conscious effort to pick up on her intuitive abilities. As many people say, I try to “live in her world” not mine. What that means for conversation is that I support Kate’s ability to talk about feelings as opposed to facts. This narrows the range of things we talk about, but I find it rewarding to be able to converse with her again. I have every reason to believe that she is enjoying herself more because she is playing a more active role in our conversations.

So what do we talk about? Well, the kinds of things I have reported previously. They fall into several categories. She has strong feelings of respect and admiration for her parents and her extended family. She talks more about her mother than anyone else. She also has feelings of gratitude about her life with her family growing up and her life with me. She has feelings about others who have been less fortunate than she has been. She is kind-hearted, something that seems to have increased since Alzheimer’s entered our lives. This leads her to say more good things about people she encounters, friends and strangers alike. Our conversations are like a litany of expressions of these feelings, and they occur over and over again.

As I reflect on what I have said, I believe that almost all of the special moments we share involve these kinds of conversations. I like seeing her happy, and she is very happy when she expresses her feelings on these topics. That is why we have so many good days. The feelings she has are strong feelings. They endure. It makes me hopeful that we will be able to continue our conversations for a good while longer.

I suspect that those who haven’t spent time with someone with dementia might think it strange or boring to engage in conversations like this. I look at it the way most of us do when talking with young children. Parents and grandparents normally love to enter the world of a child. I feel the same way about entering Kate’s world. Thus far, it doesn’t involve a lot of “make believe.” Almost all of our conversations relate to real feelings about real people and experiences. More importantly, I share Kate’s feelings, and I believe the expression of these particular feelings are healthy, even therapeutic, for us. They maintain our focus on all the positive things in our lives and not the negative and help turn what is ordinary into something special. That is one reason I say we have so many good days.

Yesterday was another one. Her memory wasn’t much better than usual. The key was her engaging in conversation with me. We had a very simple lunch at Eggs Up. She had a chicken sandwich, and I had a Greek omelet, but it wasn’t the food or the ambiance that made it special. It was the simple pleasure of a husband and wife talking about little things that mean a lot to us.

Posted on

A Very Good Day

My video cam continues to help me monitor Kate in the morning. About 7:30 yesterday, I saw that she was about to get up and went to the bedroom. When she saw me, she said, “Do I have a meeting I have to go to?” I told her she didn’t. She asked if I was sure. I assured her she had no obligations and could rest a little longer. I took her to the bathroom and then back to bed. She asked again if she had a meeting. She must have had a dream that she did. She was glad to be able to return to bed.

About 9:30, I saw that she was getting up again. When I got to the bedroom, she said she wanted “to get out of here.” I helped her up and to the bathroom and turned on the shower. Before getting in the shower, she said, “You’re really nice to do this.” I said, “I’m glad to help you whenever I can. I love you.” She hadn’t said anything that would indicate that she remembered my name or that I am her husband, but I felt that she did.

As she was getting dressed, she joked with me about something. I said, “You have quite a sense of humor.” She said, “So do you.” I said, “I guess that’s why we’ve gotten along so well.” Then I asked if she knew how long we had been together. She guessed fifty years. I told her we had been married for fifty-five years. Then I added “Fifty-five great years.” She didn’t express any surprise and said that we had done a lot of great things. Before walking out of the bedroom, she saw a wedding photo of our daughter and asked who she was. I told her that was our daughter. Again, she didn’t act surprised.

We had a little time before a lunch and dropped by Panera for a muffin. In the car she said, “What is my name?” I told her. Then she asked my name. After I told her, I asked, “Do you know how we’re related?” She said she didn’t. I told her we were married. She said, “When did that happen?” I told her it was fifty-five years ago. She found that hard to believe. I told her we had a daughter who is fifty and a son who is forty-eight. She didn’t respond with any alarm or elation. After we were seated, she asked me to tell her my name. I gave her my name and told her I was her husband.She expressed surprise. I said, “Does that bother you?” She said, “No, I’m glad. You’re a nice guy.”

From Panera, we went to our church where the seniors were having a Mardi Gras luncheon. The entertainment was a saxophone player playing music closely identified with New Orleans. She enjoyed it. About mid-way in the program, she tapped me on my shoulder. I leaned toward her so that she could whisper in my ear. She said, “What’s your name?” A few minutes later, she said. “Where in the world are we?” When I told her we were at our church, she gave me a strange look. I quickly realized she didn’t think it looked much like a church since we were in our fellowship hall that used to double as a gym.

We both enjoyed seeing people we know but hadn’t seen in a while. The seniors meet once a month, but I somehow forget to make reservations. This time someone called to remind me. The highlight for Kate came when the saxophonist played some Dixieland music, and his wife led a conga line around the room. Only fifteen or so participated. I was one of them. Kate got a real kick out of seeing me dance around the room.

Later, as we walked to our car that was parked in front of the sanctuary, she asked, “What’s the name of this church?” I told her. She had no recognition. Then I told her this was where she had been the volunteer church librarian. At first, she didn’t remember. Then I told her what a good job she had done there. That jogged her memory, and she mentioned a few things she had done in that position. On the way home, she said, “I love you.” She followed that by asking my name. She was remarkably at ease during each of these moments her memory failed her.

It had been over a month since her last pedicure. I was beginning to feel a little guilty so I made an appointment shortly after getting home. It was no surprise that she didn’t remember anything about the procedures involved. I helped her into her chair. She commented on the water. I left her in the hands of the attendant but waited in an area where I could watch her. She hadn’t been seated long before I heard her say, “What’s the name of this place?” The woman attending her answered. Then she asked what kind of place it was. As I watched, it looked like something she must have enjoyed. When I asked her afterwards if she had enjoyed it, she shrugged. I suspect by that time she didn’t remember even though we were just outside the door to the salon.

We went back home where she rested in the family room for an hour. Then she picked up a photo album of her father’s family. She had not looked at it recently and was taken with it. While she had to ask me the names of all the people multiple times, I felt the major problem was not her vision but the Alzheimer’s impact on here sight. She seemed to have a keen recollection of most of her family except some of those who had moved away from the Fort Worth area.

The best part of the day occurred when a childhood friend from Fort Worth called. Kate was quite alert. A few minutes before the call I told her the friend was calling, but I didn’t expect Kate to remember her. If she didn’t remember, she fooled me. She handled the call with poise. I sat beside her during the call and chimed in from time to time. The biggest surprise was when she remembered the name of another childhood friend.

In addition to being so “with it,” she was unusually expressive in her appreciation to me. That was true even for things I had nothing to do with. One of those involved the photo album of her family. She gave me credit for everything I had done. I told her I hadn’t done it, but she said I had assisted in getting it done. Actually, I had nothing to do with it. It was put together entirely by her brother Ken.

The rest of the day went smoothly. She was in a good mood all day. Except for the various questions she asked about names and places, no one would have ever suspected she is into her ninth year of Alzheimer’s and what I estimate to be the middle of Stage 6 of the Seven-Stage Model of the Progression of Alzheimer’s. How lucky we are.

Posted on

Morning Confusion Again

Once again, Kate was quite confused yesterday morning. It seems like this is becoming a regular pattern. Let me repeat that forgetting where she is, what my name is, and that I am her husband are not new. Two things are different. First, it is becoming more typical than before. Second, it seems like she is in a deeper state of confusion. At least, that is the way I interpret her facial expressions as well as things she says. Yesterday she repeated her questions about my name, our relationship, and her name multiple times very close together as if she didn’t even hear me the first time (second time, etc.). She was apparently “feeling” a sense of confusion or disorientation that disturbs her. Normally, when she asks my name, she does so very naturally without any special emotion. She doesn’t seem disturbed at all.

I realize “disturbed” doesn’t provide a very precise way of telling you how she felt. I use it to convey a feeling that goes from only “mildly” disturbed to “seriously” disturbed. Last summer when I first saw her this way, she was “seriously” disturbed. What I saw yesterday morning was mild compared to that. It might be better described as “puzzled.” She knew something was wrong and couldn’t understand why, but she was not distressed. This was neither a panic nor an anxiety attack. The fact that I was able to relieve her discomfort so quickly is a good indication the situation was not as dire as it has or could have been.

She wanted to remain in bed, but I suggested that she might feel better if she got up. I told her she was often groggy when she wakes up but soon recovers. I also mentioned that she has photo books of family that I thought would help her. I had no trouble getting her up, but I needed to help her every step of the way. She was almost helpless. One notable exception occurred when I started to help her to a standing position beside the bed. She said, “I can do that myself.”

Once she had gone to the bathroom and dressed, I took her into the family room. I picked up the “Big Sister” album and showed her the cover picture. She smiled immediately and commented on the smiles of her and her brother. I asked if she knew who they were. She said, “He’s my brother. <pause> What’s his name?” I told her and said, “And who is that with him?” She said, “Me.” I directed her to the sofa and suggested we look through the book.

She opened the first page with the introduction to the book and started to read it. She struggled, so I read it to her. She continued to try to read it herself but asked me to help her with most of it. This is another case of knowing that her difficulty must be from her Alzheimer’s and not her actual vision. I would say she spent at least five minutes on that page. I reminded her that this was a gift her brother had made for her. She got tears in her eyes. She has looked at the book many times before. I don’t recall her getting that emotional and so quickly. At this point, the only photo she had seen was the cover picture.

When she turned the page, she was able to see photos spread across two pages. She must have spent ten minutes looking them. She revisited each picture several times. Almost every time she asked me to tell her who the people were.

As I suggested in a previous post, seeing the pictures didn’t improve her ability to remember names and faces, but it very quickly alleviated the “sense” of confusion. All of a sudden she was focused on the pictures, not on how she felt about not knowing where she was or who she was. It was obvious that she was getting a sense of connection to her family even if she was unable to consistently identify each person. She seemed to feel “grounded.”

The sitter came in while she was on the second page. I suggested to Kate that they look at the album together. She liked the idea. When I said I was about to leave for Rotary, Kate wanted me to stay. She somewhat grudgingly relented but without a fuss. I’m sure she was engrossed with her the pictures as soon as I was gone.

At 3:30, I had an appointment with my ophthalmologist, also Kate’s. I asked Cindy to meet me with Kate at the doctor’s office. That worked out well. From there we went home for a short break and then to dinner. Kate was doing perfectly fine. We closed out the day at home watching a YouTube video of a BBC PROMS concert celebrating the music of Rogers and Hammerstein. It was one more successful day after having to address an emerging problem in the morning. I know this won’t last forever. We’ll enjoy it while we can.

Posted on

Unusually Alert Yesterday

Kate was a little more alert when she got up yesterday. She seemed to know me and didn’t express any confusion about where she was. She was very consistent in her failure to know where the bathroom is. I don’t mean to suggest that she can’t find it but that she doesn’t know which direction to go in to find it. She consistently asks me where it is in the morning as well as most other times during the day. There are sometimes when she gets there on her own. In those cases, I doubt she knows in advance exactly where she is going. I think she remembers the direction. As she gets closer, she recognizes how to get the rest of the way.

Several times during the morning, she asked my name and our relationship. Each time I   told her I was her husband. It was hard for her to grasp, but she believed me. I don’t recall her asking again the rest of the day.

She continued to have trouble remembering Frank Sinatra’s name when we were at lunch. I won’t hazard a guess as to how many times she asked his name. She specifically commented about her inability to remember his name. She thought it was strange that she has to keep asking me.

For some reason that makes me think about something else I haven’t mentioned before. Even though she doesn’t drive, she sometimes talks about the way to get home from wherever we have been. She says she needs to be sure how to get home if she were driving.  She says this as though she is still drives even though it has been over five years since she has driven a car.  Similarly, she talked about working on her computer last night although it has been at least three years since she gave that up. I’m not sure why she does this, but I think it is good that she senses that she is involved in things that have long since dropped out of her life.

I gave out another of my Alzheimer’s cards last night. As we left the restaurant, a man stopped us and introduced himself. It turned out that he is a member of our church. He and his wife were just finishing up their dinner. We talked with them about ten minutes before moving on. During our conversation the topic of colleges came up. The man asked Kate where she had gone to school. She blanked. That is somewhat surprising because one of the memories that seems to be the strongest is her connection to TCU. I stepped in and told them a little about her family’s history with the university and that our grandson is the 60th member of the family to attend. We talked about several other things before we started to leave. That’s when Kate wanted me to tell them about her family and TCU. She had forgotten my having told them a few minutes earlier. I gave them a brief review of what I had said. I also got a card out of my wallet and placed it on the table in front of the man before we walked away. I was never sure that I would find an occasion to use them. I’ve had them about a month and given out six or seven during that time. I suspect I’ll use more in the future. They are handier than I had expected.

Yesterday was a beautiful day weather wise. We enjoyed the weather and our time together. Life is good.

Posted on

Our Trip to Nashville to See Ellen

Yesterday we paid a visit to see Ellen Seacrest, one of our longtime friends who lives in a memory care facility in Nashville. It is now three and a half years since she had stroke. It affected her mobility and her speech. For a while the speech improved, but it has been much worse since having a couple of seizures a year ago. During our last two visits we could only understand about 25% of what she said. Yesterday it was even less. For the first time, that may have had an impact on Kate’s response to her.

We met in the activities room. Kate noticed some jigsaw puzzles on a shelf and brought one to the table where we were sitting. She never opened it, but she never seemed as engaged in the conversation as she had been in the past. It also seemed like Ellen directed more of her comments to me. That could have made Kate feel less involved. On our next trip, I think I will make more of an effort to excuse myself for a few minutes and let them have some private time. I am sure Kate would take more initiative if I were not in the room.

After we were there about an hour, I brought out my iPad. Ellen was enthusiastic about viewing musical performances as we have done for the past eight months or so. Apart from her career as an ETV producer, Ellen directed her church choir for almost forty years. I selected videos of the Wartburg College Choir in Lincoln, Nebraska, thinking that might be of special interest. I was right. She loved it. What’s more, Kate did as well. They were seated side-by-side with eyes fixed on the iPad. It was hard for Ellen to express her feelings except by the expression on her face, but she did convey that she liked the pageantry of some of the videos. Several of them featured the choir’s entry as they marched down the center aisle to the choir loft. Several of the pieces were accompanied by a small orchestra. I don’t think she has been to church since her stroke, so it was an especially meaningful experience for her. I am glad we got to share it with her.

After we left, we went to dinner. I was reminded of how closely I need to watch Kate when we are out. We were seated near the restrooms, but I always walk her to the door and often open it for her. Then I wait near the door for her to come out. As usual, it took quite a while for her to finish. I noticed others who had entered and come out. I went to the door and pushed it open enough to see Kate was standing at a sink washing her hands. A woman and her daughter were at the sink beside her. I closed the door assuming she would be out shortly. The mother and daughter came out, but Kate didn’t. I went back to the door. This time I knocked and slowly opened it. Kate was walking to the door. I don’t know what happened, but she apparently didn’t remember where the door was. She thanked me and showed no sign that anything had happened. It reminded me of times when I have lost and found her. She was very calm.

When we got to our table, I showed her where she had been sitting. That seems a simple thing, but she never knows where to sit. She often doesn’t understand when I show her. As she started to sit down, she said, “Where is my husband?” I said, “Right here.” She looked at me and realized she hadn’t known I was the one ushering her from the bathroom to her seat.

After dinner, I was leading her to the exit when I got too far ahead. I looked back. She was about fifteen feet behind and looking for me. I walked back and led her out. She looked at me and said, “Where is my husband?” I looked at her, and she realized again that I was the one holding hand to the car.

In both of these instances, I was struck by two things. First, was the fact that she said “my husband.” She is far from completely forgetting that. It is simiar with my name. She still occasionally calls me Richard when she needs something. Most of the time she just says, “Hey.” (That reminds me that the sitter told me that on Friday, Kate asked, “Where is my daddy?”) Second, these were clear instances of a problem with her sight that relates to her Alzheimer’s and not to her cataract. We know that she can now see out of both eyes. When she misses things, it can’t be a problem with vision.

I sense that we are going through another transition when she wakes up. I’ve previously noted that she is often confused, but the past few days she has seemed more confused than usual. She hasn’t remembered my name or relationship. It is not unusual for her not to know that she is at home, but that has been more puzzling to her when I tell her. It’s like she is in a deeper fog than usual.

I am settling into telling her I am her husband if she asks about our relationship, but I am not intending to dispute her if she thinks I am her daddy. I just don’t want to create any unnecessary problems for her. She is still alert enough to recognize that she should know she is in her own house and that I am her husband. Sometimes it can be difficult to know exactly what to say.

Posted on

Thoughts on Pixels and Kate’s Confusion

On any given day Kate may express confusion, clarity, sadness, and joy. My own emotions vary a lot as I observe each of these things. That was true on Thursday of this week, but, overall, it was another good day.

Kate has always been a little slow to wake up. As her Alzheimer’s has progressed, she has been more confused. As we move through each day’s activities, she improves. I often find that she is at her best in the afternoon and evening. I have a thought about why. I have been using the pixels on a computer screen as a simile. When we look at pictures on the computer they look beautiful. That’s because all the pixels are working as they should. Let me explain how I apply that to Kate’s behavior.

Let’s take a step back. Remember tabula rasa (the idea that we begin life with a blank slate)? Upon birth babies immediately begin to fill that blank slate. The more experience and education we get the more we fill the space. To me that’s like adding pixels. For many reasons, some people have more pixels than others just like our electronic devices. The “pixels” in the brains of people with dementia are damaged. At first, it’s just a few that are not working, but ultimately virtually all of those pixels that relate to our rational abilities fail to work as they did before.

If I extend that idea to Kate’s behavior during a day, I would say that upon waking many of those pixels are not working well. As she wakes up and engages in more activity and conversation some of those pixels begin to work again. They may or may not work perfectly, but they work sufficiently to enable her to function reasonably well. Toward the end of the day they work best although she sometimes experiences overload. When that happens, she is confused again. With this in mind, let me take you back to Thursday.

I got up with her a few minutes before 6:00 to go to the bathroom. She went back to bed, and I got ready for the day. She got up again at 9:45 and went to the bathroom. I thought she might want to get up, but she wanted to return to bed. At 11:00 when I went back to see if she would like to get up, she was awake. This time she was ready to get up. As I was helping her dress, she asked if I were her daddy. I said, “Would you like that?” She smiled and nodded. I said, “I’m your daddy.” Then she asked, “Where is my mother?” I said, “She’s in Fort Worth.” She asked her name. When I told her, she said, “She was a nice lady. People liked her.” I agreed. I can’t say what was going on in her head at the time, but she was confused. It seemed like she must have been wondering why her father wasn’t with her mother or where she was if her mother was in Fort Worth. That made me wonder if I was wrong about telling her that I was her daddy.

Just before leaving the house for lunch, she said, “Yes, Daddy” when I told her I needed to put some drops in her eyes. I didn’t say anything. Once we were in the car, she said, “Are you my daddy?” I hesitated a moment and said, “Would you like me to be your daddy?” She said, “I can see you’re not going to tell me.” Then I said, “Would you really like to know?” She said she would, and I told her I was her husband. She is frequently surprised at this news, but this time she appeared shocked. My immediate thought was “Richard, you’re causing more problems than solutions.” It reminded me of what I’ve heard so many times. “Once you tell a lie, it leads to other lies.” I felt the deed was done and didn’t back away. I told her that we had met at TCU, fell in love and married in 1963. She remained confused for a couple of minutes (maybe less). Then she had forgotten. She called me daddy one more time before we got to the restaurant. After that, I had a sense that she knew that we were married. In fact, one time she said something about our being together a long time.

Once we were home, I picked up one of her family photo albums. This was one that focused on her mother’s family. It had been a while since she had looked at it, and she responded enthusiastically. I looked over her shoulder as she went through a large portion of the album for almost an hour. I was pleased with two things. First, it seemed like she was showing less confusion as she went through the album. It was as though the accumulated impact of seeing the large number of pictures of people and places from her past was rekindling the connections in her brain. To me it was like lighting more pixels, but not all the connections came back. It was mostly her feelings and not the facts. For example, she still had trouble remembering people’s names and recognizing them as we went from picture to picture.

That night we went to Casa Bella. It was an unusually good night of music from Broadway. She loved the music and the two singers and expressed her pleasure audibly. This was one of those times when I wonder if anyone finds her audible reaction unpleasant. I don’t think so. They were noticed, however. At the end of the evening, the man seated next to me said, “This was a really good night for Kate.”

It was not just her pleasure that I thought was striking. She also seemed quite alert and happy. She didn’t seem like the same confused person she was earlier in the day. It was like all those pixels were charged up and working well. Of course, they weren’t. Alzheimer’s has damaged her brain so much that at this point there is never a time when everything is working, but I am thankful for those moments when it appears to me and to others that they are.