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Memory is fading away.

As you have probably detected from my recent posts, Kate’s world is changing. Its getting smaller and smaller. As it does, mine changes as well. I am taking charge of things that just a short time ago, she was doing for herself.
This morning I had an example. She walked into the kitchen where I was working on my computer. She was dressed for the day. I got up to greet her. She said, “Don’t get too close. I haven’t brushed my teeth.” I said, “Well, you could do that now while I get your pills ready for you.” She said, “Where can I find the toothpaste?” I told her there should be toothpaste and toothbrushes in each of the bathrooms. Then I said, “Let’s go to our bathroom, and I’ll show you.” This was a first. She has been brushing her teeth in all three of the bathrooms for years. This goes along with her forgetting how to get ice out of the dispenser of the refrigerator or locating the cabinet that keeps her cups that she takes with her when we go to places like Panera.

When we got to the bathroom, she asked me to look at her top to see if it was on backwards. It was, and she started to take it off. I left the room. A moment later, she called for me. When I got there, she was tangled up in her top. She said, “Can you help me?” I took the top and identified the label in the back and then held it up for her to put arms into the sleeves. She took over from there. This was another first. She does have one long night gown that I have had to help her with several times, but this was an ordinary top similar to all the others she wears. Getting into her night clothes is beginning to be a challenge as well. It is not uncommon for her to start to put on her gown and then put on the clothes she was just wearing.

She is also being more careful to ask for my hand when going up or down curbs and stairs. She has tried to retain her independence with respect to that for a long time. She used to be offended when I tried to help her.

Yesterday she asked me more questions than usual. They were almost all the same ones I hear regularly. The difference was that they were repeated so often during the day. They mostly related to the names of her parents, my parents, and our children. Last night she again picked up the photobook her brother Ken had given her in May. She enjoyed it as much as the first time she had looked at it.

Although she doesn’t express any concern or frustration with these changes, the fact that she continues to ask and to look at her photobooks seems like a serious effort to retain some control of her life. I told her the other day that I would be happy to write down the names of our parents, children, and grandchildren as well as a few things like how long we have been married, places we have lived, and a few of the special things we have done during our marriage. She seemed to like the idea, and I have started with a few of the basics.

When I see changes like these, I always wonder about the future. I always have potential plans for things that may or may not come to pass. One of those has been another possible trip to Chautauqua. Last year I was convinced that going this year would be out of the question. More recently, I have thought that we might be able to go for just a few days rather than staying a full week. I have just about decided to stick with my original plan and not go.

This is our year to have Thanksgiving with Kevin and his family in Lubbock and Christmas with Jesse and her family in Memphis. It is too early to make a decision on either one of these. Right now I intend to make both trips, but I will have to see how Kate is doing as we get closer to the holiday season.

I think we should be able to continue day trips to Nashville for the foreseeable future. I might even consider an overnight trip to either Asheville. At the moment, I believe it is best to continue doing what we have done in the past – take it one day at a time.

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More Confusion

Kate got up from her nap right after I uploaded the previous post. She was ready to get out of the house, so we drove over to Panera. On the way, she asked me to tell her my name. Then she asked me her name. After I said Kate, she filled in the rest. Then she asked my name again. She tried to repeat it and couldn’t. When we got to Panera, she asked the name of the restaurant. Several times over thirty minutes she asked again. She also asked my name again as well as her own. Then she asked my parents names. I thought it was strange that she wasn’t working on her puzzles. I always set up the iPad with a puzzle that is ready for her. Apparently, she left the iPad inactive for so long that it went to sleep. After a while, I asked her why she wasn’t working puzzles. She didn’t realize she could. The iPad was sitting right in front of her. She hadn’t noticed or noticed and didn’t remember how to start it. I turned it on for her, and she is working the first puzzle, and we have been here almost 45 minutes.

Although she has asked almost all of these same questions other times, she seems especially confused today. Each time she asks for the same information, I get the impression that her lack of memory is troubling her. I hope we aren’t preparing for another anxiety attack tonight. As I said in my previous post, I hope the evening at Casa Bella saves the day.

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A Slow Start on the Day

Kate was late getting up today. It was a few minutes before noon when she appeared and said she was ready to go. She was dressed appropriately for the day except that she was wearing a bathrobe over her clothes. She was carrying two night gowns over one of her arms. As we walked toward the garage, I told her we were expecting it to be hot and that she might not need her robe. She accepted that without a challenge. I wasn’t going to say anything about the two gowns. Then she started to put one of them on over her clothes. When she did that, I said, “I don’t think you’ll need the night gowns either.” She put both of them down on the island in the kitchen and off we went to lunch.

After we ordered, she seemed tired and confused. She asked me to tell her my name. Then she asked me her name. That was followed by asking if we have children. I told her about them and their families. I pulled out my phone and showed her several pictures taken with them in the past few months. As we went from one picture to another, she kept asking me who the people were. Some of that is related to the size of the photos on the phone coupled with her eyesight. Her vision in one eye is 20/60. She also has cataracts that are affecting her sight as well. I’ve been in conversations with the ophthalmologist about surgery. We had decided to wait until her next appointment in January. I am beginning to rethink that decision.

On the way home, she said asked if she could take a nap. I told her that would be fine. She didn’t waste any time getting into bed. It is now 4:15, and she is still in bed. I woke her 25 minutes ago, but she hasn’t moved. Tonight is jazz night at Casa Bella. We’ll be leaving for that at 5:30. She always enjoys the musical nights. I hope this perks her up, but then I wonder about getting to sleep tonight.

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I shouldn’t be surprised, but I am.

We were at Panera a little over an hour this morning when Kate wanted to leave. It was a little early for lunch, so we went home. As we left our table, we chatted briefly with a group from a nearby Catholic Church who meet at Panera several mornings a week after morning mass. As we walked out the door, Kate said, “What are our names?” I must have looked puzzled. She added, “You know, what people like the people we were just talking to would call us.” I told her both of our full names.

This is not the first time she has asked our names although she has always done it one at a time before. Nonetheless, I am well aware that she is beginning to lose the connection between us and our names. Why then, should I be surprised? The only thing I can figure is that so much of Kate’s behavior is quite normal that I don’t expect this kind of question. Thus, it continues to be somewhat jarring when I hear her ask our names.

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Our Sunday

We had a nice day yesterday despite Kate’s appearing to be a bit more confused than usual. A couple of times I was concerned that it might evolve into the kind of anxiety she experienced this past Wednesday evening. Fortunately, that didn’t happen. She got up unusually early, just before 8:00. She was walking slowly down the hall from our bedroom wearing her robe as I went to check on her. I asked if she had just gotten out of the shower. She said she was just going to take one.  Then she asked, “Where should I go?” She was standing right outside the guest bathroom. I told her she could go there are to the one off our bedroom. She said, “I’d like our bathroom. Where is it?” She uses several towels, so I got a couple of extras from the guest bath and walked her to ours.

We surprised some of the regular customers at Panera. They are accustomed to our coming later. Yesterday we got there before a group from a nearby Catholic church. We had gotten there before they did. While we were there, Kate asked me to tell her where we were (both the restaurant and the city). She also asked about her father’s name as well as those of our children and grandchildren. This occurred again at lunch and at dinner. Asking these names is not unusual. It’s just that I sensed a bit of concern on her part about not remembering them. I may be overly sensitive because of her experience the other night.

What she remembers and forgets sometimes surprises me. In the car yesterday, she said, “Nineteen thirty-six” and nothing more. I guessed correctly that she wanted me to tell her the significance of that year. I said, “That was the year my parents moved to West Palm Beach.” She said, “That’s the year my parents got married.” She was absolutely right. She surprised me.

Yesterday afternoon, I asked if she would like to look at some of our old pictures. She said yes, and I picked out pictures from a trip to Spain and France that we took in 1973 when our children were 4 and 2. We were gone six weeks, and our son was still in diapers. I should add that they were cloth and Kate washed them by hand every day. When I mentioned the trip, she immediately said, “People thought we were crazy, but it was great.” That is something she has said many times when we bring up the trip. It is obviously embedded in her memory.

Then I reminded her that she and our daughter had seen Julie Andrews and her daughter at the Jeu de Paume in Paris while I was taking care of our son. She has talked about this experience many times over the years. Kate described how no one else was in the room but the two mothers with their daughters. Kate was careful not to invade their privacy but took great interest in how Andrews was explaining the art to her daughter. Kate wanted to tell Jesse that was “Mary Poppins,” but that was before she had seen the movie. Yesterday, when I re-told the story to Kate, she didn’t remember a thing about it. Three or four years ago, we had seen Andrews and her daughter at Chautauqua talking about a children’s book they had co-written. She enjoyed reliving her original experience with the two of them in Paris. Even that more recent encounter wasn’t enough to overcome the changes that Alzheimer’s brings with it. I was crushed.

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Facing Reality

Yesterday began pretty much like most days. Kate’s sleeping pattern has been somewhat erratic. I started to wake her up just before 11:00 so that we might have lunch before the sitter arrived at 1:00. It took her longer to get out of bed than usual, but I didn’t think much about that.

I decided to go to Panera for lunch since we were a little late getting away. I called the sitter to meet us there. As soon as we sat down, Kate said, “Does this place have a name?” That, too, is not unusual. Then she asked, “What’s the name of this town?” I told her Knoxville and that we had lived here 47 years. She was as surprised as she usually is. She asked the same question several more times.

When Mary arrived, Kate seemed perfectly normal. When I left, she didn’t show any reservations about my leaving. When I returned home, Kate was in the back of the house. Mary said Kate rested a little while I was away. Although she had plenty of sleep the previous night, I wasn’t too surprised about that.

After Mary left, Kate was ready to go as well. We went back to Panera for about 30 minutes before going to dinner. When we got out of the car, she asked, “Where are we?” During dinner, she must have asked another five or six times. As we left the restaurant, she asked again. I told her again, and she said, “So, we’re not in Fort Worth?” I said, No, we’re in Knoxville. We’ve lived here 47 years.”

The previous night we had watched half of the movie South Pacific. We had enjoyed it. All the music was so very familiar. We watched the second half last night. Kate started out working puzzles on her iPad but became engaged in the movie. She put the iPad down.

When it was over, I started to get ready for my shower. A moment later, she had a look of concern on her face. She called my name, and I went over to her. She said, “I don’t know what’s going on. I don’t know who I am or where we are?” I’m unable to find the words to adequately express her emotion. It was a look of puzzlement or fear. This was different from simply asking her name which has happened a few times recently.

I said, “Let’s take some time to talk. I think I can help you. I could show you some pictures of your family. Would you like to stay here in the bedroom or go to the family room?” She wanted to go in the family room. We sat on the love seat. On the table was a photo book that her brother Ken had made with photos of their father’s family. I picked it up and showed her pictures of her grandparents. She didn’t remember them at all. She has gone through this album many times. I might have thought the photos themselves would have jarred her memory. They didn’t. A moment later, she said, “Why don’t you show me tomorrow when I am thinking more clearly.”

I put the book down. I looked at her and said, “Can you tell me how you are feeling?” She said something like, “I don’t know. I just don’t know where I am and what’s going on.” I said, “Are you afraid?” She said, “No.” I asked if she was confused. She said, “Yes. I just don’t know what’s happening to me?” At that moment, and right now as I write, tears welled up in my eyes.

We haven’t spoken about her Alzheimer’s in years. It isn’t something she has wanted to talk about. Recently, I have wondered if she even remembered that she has the disease. Over the years, I had decided there was little reason for me to bring it up. Faced with this particular situation, however, I said, “What you are experiencing is caused by Alzheimer’s. It’s a natural part of having this disease.” Very calmly, she said, “I knew I had it, but I haven’t thought about it in years. I had forgotten.”

I didn’t go on to say any more about Alzheimer’s. Instead, I said, “I want you to know that I will always be here for you.” She said, “I know that. I’ve never doubted that.” She went on to say how fortunate we are to have had such a good marriage. As she often does, she also said how fortunate we are that our children have turned out so well.

I reminded her that we have been married 55 years and said, “During that time we have had so many great experiences.” She asked me to tell her some of those experiences. For the next fifteen minutes or so, I talked about the places we have lived and the special things we have done. We both enjoyed having this moment of reflection. It wasn’t that we don’t reflect. We do that a lot. In that moment, however, it seemed more special than usual. When we finished, seemed seemed more relaxed though probably still confused. I think we both felt comforted by our conversation.

Over the course of the past six months or so, Kate has been on a gradual, but noticeable, decline that is a sign of what will be the hardest part of our journey. Her experience last night brought the harsh reality of Alzheimer’s to the forefront of our lives. We have lived as if this day might not come. I knew it would, but it’s painful to watch someone you love go through it.

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Surprising Memories

Kate’s memory has declined so much over the past few months that I am surprised when she remembers almost anything. That happened twice yesterday. The first occurred on our way to lunch. Only minutes after asking me the city we were in, she said, “Madison (WI) changed my life.” I was surprised for two reasons. First, that without my saying anything to prompt her, she remembered Madison where we had spent three years while I worked on my PhD at the University of Wisconsin. Second, that she was able to express a truth about our time there. It changed both our lives in significant ways. The first two years she worked as a secretary to the director of graduate admissions in the English department. He was an outstanding scholar, and Kate had an undergraduate degree in English and had completed all but her thesis for her master’s in English. She came in daily contact with professors that were well-recognized for their contributions to English literature. She was in heaven.

The other memory occurred after lunch. At Carla’s we have a single scoop of salted caramel gelato each week. We love it. For Kate each week is like the first time she’s ever eaten it. That was true again yesterday. She raved over it while we were enjoying it and after it was gone. Time passed as we got our check and paid it. Then as we walked toward the car, she said, “That was the best ice cream.” That may not seem unusual, but it really surprised me. She’s never commented like this about anything we’ve eaten before. It obviously made an impression on her. When we were almost home, she again mentioned “the ice cream.” I was doubly surprised and happy. It is very special when things like this happen.

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There ARE humorous moments.

In the car on the way to lunch today, Kate said, “What city is this?” I said, “Knoxville, Tennessee.” A couple of minutes later, she asked again. I said, “Knoxville, Tennessee, where we have lived for 47 years.” She was surprised as she always is when I tell her this. She said, “I guess that means I’m old.” Though I am only six months older than she, I said, “Think about me. I’m 78.” With a smile on her face she quickly responded, “Well, you’re ancient.” She still has her sense of humor.

While we were at lunch, she asked me at least three more times where we were. One of those times was immediately after I had told her. A similar thing happened on the way home after lunch. She asked me to tell her my full name. Right after I said it, she said, “Say it again.” I did and then asked her to say it. She got the first name but was stumped on my middle and last names. She didn’t express any frustration. She just laughed. I laughed with her. Of course, it’s really sad, but it feels good to laugh, especially when she initiates it.

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A Mother’s Love

I got in bed last night about thirty minutes after Kate. That’s rather typical. Sometimes it’s a little longer. She was still awake and said that she had been waiting for me, wondering what I was doing. I had been reading in my chair right beside the bed. Until the past few months, I had been going in the family room and reading so as not to disturb her. When I discovered that left her feeling alone, I started reading in the bedroom. Since I read from my iPad, I have no trouble reading in the semi-dark room. Even though I am nearby, I find that she feels better when I finally get in bed with her.

After snuggling up close to her, she said in a very childlike way, “Tell me about our children.” I did. We talked a few minutes more and she again said, “Tell me about our children.” It was like a child who wants her mother to tell her favorite story once again. Over the past 4-6 months, I’ve grown accustomed to her asking me to tell her our children’s names or sometimes asking “Do we have children?” This was the first time, however, that she has asked in this way, and it opened my eyes to a reinterpretation of her asking.

She asks me other people’s names continuously throughout the day. That almost always occurs when I have said something like “Today we are going to see the Robinsons.” Her typical response would be “What are their names?” When she asks our children’s names, it isn’t usually prompted by anything I’ve said. For example, we may be driving in the car, not even talking, when she says, “What are our children’s names?”

At first, I interpreted her questions as a simple request for information. I also wondered why she seemed to ask about our children’s names as much or more than other people’s names. She should have been able to remember them much longer than those of others.

Last night when she said, “Tell me about our children,” I don’t think it was because she is simply forgetting their names like those of everybody else. It’s precisely the opposite. Her many unprompted requests for their names is because they do matter so much to her. She loves them dearly. They are precious to her, but their names are slowly slipping away. It’s her “mother’s love” for her children that is prompting her questions.

In addition to forgetting their names, I am sure she is forgetting most of the things about them. She hasn’t forgotten her feelings for them, however. She is doing her best to hold on to the last memories she has of them. I intend to do my best to help her.

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Update on Sitter

Last Monday, Kate didn’t seem eager for her sitter. When I got home, Anita told me that Kate had been very quiet and not herself. Since I knew she was fine during the morning, I was concerned that we might have a problem with the relationship between Kate and Anita.

Kate got up late this morning. I had to wake her in order to get her lunch before leaving for my Rotary meeting. As I have done at least once before, I gave her the option of staying in bed and having Anita take her to lunch or going with me. She wanted to go with me and got up quickly. She met me I the kitchen when she was ready and asked how I was doing this morning. I said, “Just fine now that you are here. I love you.” Using her hand signals, she conveyed that she felt the same way about me. As I backed out of the garage, she said, “Tell me your name.”

We were running late, so I asked Anita to meet us at Panera. When I saw her walk in the front door, I told Kate that Anita had arrived and that I would be leaving for Rotary. She gave me a concerned look and said something that I interpreted to mean that she didn’t see a need to have someone stay with her. Then Anita walked up to the table, and Kate greeted her warmly.

When I returned home, everything seemed fine. They were both in the family room. Anita had the TV on. Kate was on her iPad. I walked Anita to the car and asked how things had gone. She said Kate was fine today. When I walked back inside, I asked Kate the same question. She also thought things were fine.
I did point out a photo album that Kate’s brother Ken had made for her. Anita said she had not seen it. I suggested that next Monday she have Kate show it to her. I felt better today than I did last week but will continue to be sensitive to any potential issues that arise.

As usual, Kate was ready to leave the house after I came home. Before leaving, she asked, “Where are we?” I told her we were at our home in Knoxville. She went to the bathroom. She asked the same question again. She asked again before we got in the car. She asked another three or four times before we got to Panera where I got her a bagel.

She was very tired at dinner and immediately got in the bed and under the covers when we got home. I let her rest for almost an hour. Then I suggested that she might get up so that she would be able to get to bed at her usual time tonight. She got up quickly and is now working on her iPad.