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“This is not my best day.”

Kate was up a little earlier yesterday. That gave us time to spend an hour at Panera before leaving for lunch at Andriana’s. Other than the time she got up, Kate seemed pretty much the way she usually is, perhaps a little less groggy. After we took our seats at Panera, I discovered something that established a pattern for the rest of the day. Here’s an excerpt of our conversation.

Kate:              “What’s my name?

Richard:        “Katherine Franklin Creighton.”

Kate:              (Looks puzzled) “Creighton? Where did I get that?”

Richard:        “From me.”

Kate:              “Are you my father?”

Richard:        “No.”

Kate:              “Who is my father?”

Richard:        “Charles Franklin.”

Kate:              “Charles Franklin. Who is he?”

Richard:        “He’s your father.”

Kate:              “Is he married?”

Richard:        “Yes. He married Virginia Franklin.”

Kate:              “Wait. Tell me that again.

Richard:        Your parents are Virginia and Charles Franklin.”

Kate:              “Do they have any children besides me?”

Richard:        “Yes. You have a brother.”

Kate:              “What’s his name?

Richard:        “Ken Franklin.”

Kate:              (Now on overload) “Stop. You’ll have to tell me again, but later.”

In some ways this conversation was no different than others we have all the time. What struck me about this one was that nothing I said appeared to spark the least sign of recognition. Normally, upon hearing her father’s name, she might say something like “He was a nice man.” In this conversation she was always searching for something that sounded familiar and not finding anything. She just kept asking questions until she couldn’t process any more.

From Panera we went directly to lunch at Andriana’s. She continued to have memory problems. The big surprise was the first time (of many) that she pointed to the mug shot of Frank Sinatra and asked me who he was. I fully expected her to say, “I don’t like him.” She has been saying that or some variation the past few years we have eaten there. This time she didn’t say anything. It was about the third time she asked that she said, “Is he a nice guy?” I tried to get around this by saying that he was very popular. She pushed a little harder, and I told her that his ex-wives and girl friends might not think so. She didn’t pick up on that. Subsequently, she just asked his name, and I told her without her expressing any evaluation. That is a big change from the past.

Before we got our food, she asked about her name and mine. That led to asking about our relationship. When I told her I was her husband, she was surprised. She couldn’t understand how that could be, but she did believe me. It was one of those times when she was glad to know we were married. Despite her confusion, we had a very nice lunch and conversation.

As soon as we got home, she wanted to take a nap. She rested about an hour. Then she came to the family room and started work on her iPad. It wasn’t long before she saw the “Big Sister” album on the coffee table. She picked it up and started to go through it. I was seated across from her with my laptop. She spent about twenty minutes before asking if I could help her. I took a seat beside her on the sofa. She asked me to tell her all the names of the people in the photos. She didn’t mean on a single page or several pages. She meant all the people in all the photos in the book. Most of them are of her, her brother, her mother and father, and occasionally other extended family members. She never appeared to recognize them from one photo to another. Each time I said, “This is your Daddy” she said, “What’s his name?” The same was true for her mother. Frequently, one photo was beside the other. I still needed to tell her their names. We hadn’t gone through more than four or five pages before her brain was on overload. That’s when she said, “I think we should stop. This is not my best day.” Once again, I was struck by how well she understood that she was not having a good day. I should add that she didn’t display any sense of frustration, confusion, or anxiety. She simply recognized her brain was not working as well as it should. She was right.

I suggested we leave for dinner. She said, “Maybe that would help.” She sometimes says the same thing before taking a nap. On the way to the restaurant, she asked, “Are we in Texas?” I told her we were in Tennessee. She said, “Where is TCU?” I said, “In Texas.” She said, “I know that, but where is it around here?” She hadn’t remembered I had just told her we were in Tennessee.

We had a nice time at dinner. We didn’t talk a lot, but we did converse off and on throughout the meal. She had salmon and talked about how good it was. When she had almost finished, she said she was getting full and wanted to know if I wanted the rest. I took a small piece, and she said, “It’s all right but not really that good.” This change in evaluations is not unusual. This happens frequently and makes it difficult to know if she really likes or dislikes things.

When we stood up to leave the restaurant, she said, “I want you to know I’ve enjoyed being with you. You’re a nice guy.” It sounded like I was her boyfriend, and she was about to dump me. I said, “Thank you, I enjoy being with you too.” In the car I mentioned something about our son and his family’s being in town next weekend. She said, “What do you mean our son?” I explained that we are married. She gave one of her most common responses, “How did that happen?” I told her and said, “Are you unhappy about that?” She said, “No, I’m glad. You’re a nice guy.”

Back at the house she picked up her iPad and worked puzzles for the balance of the evening. That is not to say it was easy. She ran into problems working puzzles all day. At one point last night, she closed the iPad and put it down. I could tell she was a bit frustrated and asked if she would like to look at one of her photo albums. She said she would. I brought her the “Big Sister” Album. She expressed only mild interest in the cover photo that she loves so much. In a few minutes, she said, “What do I do now?” She had never opened the album. I went over to her and opened to the first page of photos. She didn’t express much interest. I couldn’t believe it. I told her who the people were, but that didn’t make any difference in her response. She said, “What do I do now?” I told her she should just look at the pictures. I started to step away when I noticed that she was pressing a photo. She was treating the album as though it was her iPad with jigsaw puzzles. She thought when she pressed a photo, it would scatter the pieces so that she could put them back together. She was confused when nothing happened. I told her they weren’t puzzles but pictures. She was disappointed and said, “Then what do I do with it (the album)?” I told her she could just look at the pictures and enjoy seeing her and her family. She must have had it so deeply imprinted on her mind that it was an iPad with puzzles that she couldn’t relate to it as a photo album. I said, “It sounds like you would rather work puzzles now.” She nodded. I picked up her iPad and gave it to her.

While she was working on her iPad, I played a variety of YouTube videos starting with Tony Bennett and Diana Krall. She expressed only modest interest until I pulled up a Julie Andrews concert. She enjoyed that so much that she put her iPad down and watched. That led automatically to a portion of a BBC PROMS concert from 2010. It featured the music of Rogers and Hammerstein. She was fully engaged. Once again, music made a difference.

She was so engaged that she didn’t want to go to bed. She finally did and slept until 1:45 this morning. She sat up in bed. I asked if she wanted to go to the bathroom. She said yes and asked, “Should I go to my bathroom?” and pointed to our bathroom. She seemed rather alert and got up on her own and walked to the bathroom. I was afraid I might go back to sleep before she returned to bed, so I got up. After using the toilet, she spent about ten minutes brushing her teeth and cleaning her face.

I walked her back to the bedroom. As she was getting into bed, she said, “Well, we did it. <pause> Once again.” I didn’t ask what she was talking about. I just agreed that we had done it again. Once we were in bed, she laughed and said, “If we told our friends about this, they wouldn’t believe it. <pause> I almost don’t believe it myself.” She repeated this several times before we went to sleep. She is still sleeping. I wish I knew what she was talking about.

Given all these things, how do I assess the day? Clearly her memory was worse than any other day I can recall. In that respect, it was a bad day. To make matters worse, I know that this is part of a transition to even greater memory loss. I don’t like that. For the most part, Kate’s decline has been very gradual. The most striking changes have been since last spring. I know from others that people with dementia sometimes have sudden changes. Should I expect to see more of this in the next few days? Weeks?

On the other hand, she was happy all day except for a little frustration with her puzzles last night. We had a good time together. For that reason, I think of it as a good day. I really mean that. It reminds me of a professional and Facebook friend whose child has Down’s Syndrome. I know she is troubled by her daughter’s diagnosis and wishes she weren’t disabled in this way; however, she relates to her daughter as she would do with a normal child and enjoys her immensely. It’s much the same with Kate and me. Having Alzheimer’s is the worst thing that has ever happened in either of our lives. I find it especially difficult to watch her lose more and more of her abilities, but I try to look on the positive side (what she can do and what we can do together) and be grateful for those special moments we experience together.

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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.”

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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.

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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.

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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.