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.

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.

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.

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.

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.

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.

A Tender Moment This Morning

I looked at the clock. It was 5:45. As I rolled over to get up, I heard a soft chuckle. Kate often does this when she recognizes that I’m awake. I think it’s her way of saying, “Hello, I’m awake too, but I’m not ready for conversation.” I reached over and touched her arm. She pulled my arm around her. It was a loving response. She didn’t appear to be afraid. She just wanted to be held. Neither of us said a word. I held her until 6:15 when I got up.

As I was finishing up in the bathroom, she came in. When she was ready to go back to bed, she said, “What do I do now?” I told her it was still early and that she should go back to bed. She said, “Where is it?” I walked her to the bed. She sat down and said, “Thank you.” I said, “I love you.” She smiled and said, “I love you too.” Then, as so often happens, she said, “What’s your name?” This is just another example of the loss of her rational abilities while retaining those that are intuitive. In this case, her feelings for me. Tender moments like this continue to sustain me as her life and mine keep changing in ways I wish I could stop.

In-Home Care

Yesterday someone I follow on Twitter reported a success he has had with a sitter for his wife who had told him, “She’s just like my sister.” I wish I could say the same about Kate and her two sitters. Her relationship with them seems to fall far short of that. It has been one year and five months since I engaged an agency to provide sitters four hours each Monday, Wednesday, and Friday afternoon. On the whole, it has gone better than I imagined, but there have been times when she wanted me to stay with her. That made it difficult for me to walk away. It was very much the way a parent feels when leaving a child at home, school, or a child care center.

Recently, we have had more success, and it involves both of our sitters. We have had to replace three of the Monday sitters. That wasn’t because of any dissatisfaction. Each of them has involved health issues of the sitter or her family. The one we have now has been with us three times. Kate was asleep the whole time she was here on her first visit. Kate has received her warmly the past two times she has been here. The two of them seem to be getting along all right. The first visit they spent the whole four hours watching YouTube videos of musical performances. The last time they watched Fiddler on the Roof. I am optimistic that will continue to go well.

We have been fortunate that the Wednesday and Friday sitter is the same one who started with us. I wouldn’t say that Kate thinks of her like a sister, but she is comfortable with her. Yesterday was a good example. When Mary arrived, Kate had just started looking at her “Big Sister” album. I suggested that she move to the sofa so that she and Mary could go through it together. Kate was happy to do that. When I told Kate goodbye, she didn’t express any disappointment. Her attention was focused on her album. I felt good when I left.

When I got home, they were both in the family room. Mary was watching TV, and Kate was resting in a chair. Mary told me they had spent some time with the album and then they had gone to Panera for a while before coming back to the house. I had left the TV in our bedroom set on YouTube in case they wanted to watch videos, but they hadn’t done so. I was happy that they had amused themselves without my having to structure too much of their activity. They seem to have gotten along well. Kate didn’t say anything that would have made me feel otherwise. I haven’t ask Kate how things went with the sitter in a long time. She never remembers, but I am encouraged that she doesn’t show any signs of bad feelings about Mary. More importantly, when I see them together as they were when I left, I can tell that Kate is quite comfortable with her.

I am still wondering when I might add extra help. Financially, there is no obstacle. We have already met our 90-day out-of-pocket costs for our long-term care insurance. The company will pay the total costs up to fifteen hours a day, but I don’t currently feel the need to have more time away. More importantly, I want to spend as much time as I can with Kate as long as we are able to enjoy doing things together.

I should add that I do sense the effects of the increasing responsibility of Kate’s care. I am discovering things I have left neglected or totally forgotten. One of the things I wonder is whether the greatest help would be overnight or during the day. I am getting up at night with her more than in the past, and I don’t always get right back to sleep. I could easily see that having someone here overnight could be of benefit. That would probably mean our moving to separate bedrooms. I’m a long way from being ready for that, but I know that time will come. I’m not going to worry about it now. In the meantime, I’ll continue with the status quo. I’m happy with it.

A Rocky Start, But a Grand Finish

When I went in to wake Kate yesterday, I wasn’t sure what kind of day it would be. She opened her eyes as I approached the bed and gave me a very warm smile. It looked like a time when she knew me. I said good morning and told her I loved her. Then I said, “I hate to get you up. You look so comfortable.” Her face turned to sadness, and she said, “This isn’t easy.” I didn’t know what she meant and asked what was wrong. She hesitated and said, “It’s hard to put in words.” I encouraged her to help me understand. Then I said, “I want to help you.” She said, “What can you do?” I said, “I can be your friend and comfort you.” She said, “I like that,” but she didn’t say anything more. I let it go. I suggested she get up and take a shower. She accepted the suggestion and seemed all right for the balance of the day.

She periodically has these moments of worry or anxiety. When she says things like “This isn’t easy,” I can only wonder if she is talking about her Alzheimer’s. It always sounds like it, but I can’t be sure. I am confident that she no longer knows she has the disease; however, I know she recognizes her memory is gone. She sometimes expresses concern about it. More frequently, she says, “Don’t tell me more. I won’t remember it.” Sometimes she stops working her puzzles when she knows she is not thinking clearly. She says she is tired. Yesterday she had a similar experience with her “Big Sister” album. She can only process so much information. These moments are the hardest ones for me.

I am often amazed at how quickly she can forget. At lunch, she said, “What is your full name?” I said, “Richard Lee Creighton.” She said it and then tried to say it again and couldn’t. She asked me to say it again slowly. After I did, she said, “Now let me say it.” She said it twice, took a slight pause and said, “What is it again?” She had forgotten again in a split second. It’s like turning a light switch on and off.

I don’t know if she knew me as her husband earlier that morning, but I know she did when we returned home after getting haircuts. She wanted something to drink. I told her we had apple juice and water. She eagerly said, “Can I have apple juice?” I told her she could and added, “I only let my best girl friends have apple juice.” She quickly said, “I better be your only girlfriend. We’re married you know.” A quick response like this is not uncommon. I was playing a CD of A Chorus Line. I know that she enjoys the music, but I was surprised at her laughter at the lyrics of one of the songs. Apart from that I had no sense of her listening to the lyrics. I thought it was just the music she paid attention to. There are also moments when she does something that I don’t like. She will say, “I know that bothers you.” Then I say something like, “No, that’s just fine.” She follows that with “I know you’re just trying to be nice.” She is still insightful.

The highlight of the day for both of us was our weekly dinner at Bonefish Grill. As the host was showing us to our table, we passed someone I hadn’t seen in several years. He and my dad were good friends who met in a seniors’ writing class. Dad was 26 years his senior and he (like many others) took an interest in the fact that Dad seemed so much younger than his years. He introduced us to his lady friend and told us that she was moving from New York City to live with him. We chatted a few minutes. Then they invited us to join them. We accepted their invitation and had an interesting time catching up and learning about his new friend. They had been college sweethearts at the University of Illinois in the late 50s and early 60s. They had lost touch since college, and each had married other people. Their spouses had died, and he looked her up and found her. That was several months ago. Kate and I have traveled to New York quite a few times. That and the warmth of the couple enabled her to feel comfortable in participating in the conversation. We had a great evening together and talked about our getting together again when she makes her move in March. At one point while the two women were talking, I had an opportunity to ask my friend if I had told him about Kate’s Alzheimer’s. He said I had and told me that his friend is facing the same thing. It’s just one more reminder of how common this disease is. I plan to stay in touch with him.

It was a week ago yesterday that Kate had her cataract surgery. It is clearer to me that she is able to see more easily now. Her vision is far from perfect, but now I am reasonably sure it is the Alzheimer’s and not her actual vision that is the problem. Yesterday she picked up her “Big Sister” album. The cover photo had caught her as eye as she walked by it in the family room. She thought the picture of her brother was our son, but that is definitely related to her Alzheimer’s. As she leafed through the pages, she tried to read the text. In the past, she has just looked at the pictures. I feel good about our going ahead with her surgery. I am sure it will continue to have a payoff even as she declines further. Our son and his family are coming for a visit during their spring break. Her improved vision should enhance her experience with them. It is difficult enough to have lost memory, but to lose her ability to see could have made a major difference in her quality of life.

Relieving Confusion

Kate seems to be entering a new state of confusion. For months, I have noted that she sometimes forgets I am her husband. In the past few days she has more frequently asked if I am her daddy. I believe this represents a further step along the way to totally forgetting who I am.

It also requires me to think more carefully about telling her who I am. I believe when she asks, she really wants me to tell her the truth. I’m not going to correct her if she calls me “Daddy.” On the other hand, I will continue telling her the truth when she asks unless or until I see any harmful effects. Even though she is usually surprised to find out that we are married, she hasn’t seemed especially disturbed. Yesterday morning she even reacted positively. When I told her I was her husband, she had a funny look on her face. I asked if that bothered her. She said, “No, I like that. You’re a nice guy.” I intend to watch carefully for any change and make adjustments accordingly.

So far I have been encouraged by my ability to lead her out of confusion. This morning’s events are a good example. I didn’t see or hear her when she got up at 7:30 to go to the bathroom, but I heard her say, “Hey.” I found her in a hallway where she had just come out of the bathroom. She asked me what she should do. I wasn’t quite sure what to say. Except for her reliance on me to tell her what to do, she seemed much more alert than usual. It looked like it would be easy to have her take a shower and get dressed. The fact that it was so much earlier than she usually gets up made me think she should rest a little longer. I suggested she do so. When I pulled the covers over her, she said, “What do you want me to do now?” It didn’t sound like she was ready to go back to sleep. I decided to get her up for a shower.

She got up right away and wanted to know where to shower. I walked her to the bathroom. In keeping with her previous line of questions, she wanted me to tell her each step to take.

After her shower, she went back to bed and fell asleep. I got her up shortly after 11:00 so that she would be ready by the time the sitter arrived at noon. Since she was waking up from a sleep, I wasn’t surprised that she was just as confused as she had been earlier. I went to the family room and brought back the “Big Sister Album” Ken had made for her last spring. She took one look at the cover picture of her and her brother. She smiled and commented on the smiles of the two children. She loves that picture. She asked if that was a picture of her. I told her it was. She wanted to know who the boy was. I told her it was her brother Ken. Then I suggested we go to the family room, and I would show her pictures of her mother and father. She liked that.

As we looked through the pictures, she seemed to gain a better sense of who she is. She still had trouble remembering the people in the pictures, but she recognized some of them. As she did the last time we looked through it, she recognized her grandmother, calling her Nana. In contrast, she repeatedly asked me her parents’ names.

This experience and others like it have made think once again about rational and intuitive abilities. Looking at the pictures didn’t help her identify the people (rational ability); however, it did eliminate her confused feeling (intuitive ability). She seemed to have a sense of connection to her family that was calming. She is especially sensitive to the smiles in all the pictures. As we move from picture to picture she says things like, “Oh, look she’s smiling,” “She’s not smiling,” or “Look at his smile.” The smiles have a real impact on her and bring smiles to her face.

My original intent was to let the sitter take Kate to lunch, but I didn’t have Rotary and decided to go with them. That gave me an opportunity get a little better acquainted with her since this was her second time. I had the same good feeling about her that I had last week. Kate did as well. Before leaving, I put in a DVD of Fiddler on the Roof for them. When I returned they were watching.

Kate was tired and wanted to rest a while. When she got up, she wanted to know what she could do. I told her she could work puzzles on her iPad. She didn’t know what an iPad was. She forgot the name of the iPad quite a while ago and often doesn’t know what it does when she sees it. I got the iPad and gave it to her. She sat down and asked me where we were. I told her we were in Knoxville. She said, “Good. I thought we were in New York.” I said, “I thought you loved New York.” She said, “I do, but I like it here. We come here a lot.”

An hour later we left for dinner. Friends we met at Casa Bella had invited us to dinner at an Italian restaurant near their home. We’ve gotten together several other times and enjoyed being with them. We had a good meal and pleasant conversation. As usual, Kate handled herself quite well.

It is becoming increasingly difficult for her to follow conversations. A number of times she stopped one of us to explain something she missed or didn’t understand. I think the problem occurs with the shift of conversation from one person to the next. It’s just too fast for her.

I’ve noticed other things like that. Increasingly, she wants me to simplify things I tell her. It’s confusing to say, “Here are your clothes. Put on your top and pants.” When I do that she says, “Tell me one thing at a time.” When looking at photos, I might say, “Look at this picture of your daddy.” It takes her a while to locate her father even if my finger is on the picture. It’s as though she sees a vast array of stimuli and doesn’t know where to look.

From the time the sitter arrived until we went to bed, Kate didn’t show any unusual signs of confusion. I don’t mean that she didn’t experience any confusion. For example, she never knows where she is and usually doesn’t know my name or hers. What I mean is that she didn’t show any signs of being disturbed by her memory problems. I didn’t specifically ask, but I think she knew I was her husband. I know that sometime during the late afternoon or at dinner she mentioned our two children. Her day was highlighted by her “Big Sister Album” and having dinner with friends. It was a good day.