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Our Most Painful Moment (Yet)

Yesterday Kate was again up early enough for us to get to Panera and then have lunch before going to a memorial service for a church friend. Later in the day we spent a little time at Panera before going for our weekly pizza.

In previous posts, I have noted that she is asking for help with my name, her name, and our children’s names more frequently than she has done in the past. That was certainly true yesterday. As we left for Panera yesterday morning, she said, “What is your name?” I told her, and then she asked for her name. While at Panera, she asked my name and tried to repeat it back to me. She couldn’t and ask me to tell her again. We did this several times before stopping. It came up again at several other times of the day.

I didn’t think much about it, and we had a pleasant day. As we went to bed last night, this took a different direction. I moved close to her and put my arm around her. Then she asked, “Who are you?” I wasn’t sure whether she wanted my name or that I am her husband and said, “My name is Richard Creighton, and I am your husband.” She said, “We’re married?” I told her we were, and she asked, “Do we have children?” I told her we did, and she asked their names. She asked me where are. I told her Knoxville and that we had lived here 47 years.

Then she said, “My memory is going. I don’t know what’s wrong with me. I can’t remember anything.” That was a moment when I could have reminded her that she has Alzheimer’s. I decided not to do that. Instead I said, “Remembering things gets harder as we get older. I will help you remember.” She said, “I know you will. I’m going to get my memory back.” I said, “We’ve been married for 55 years, and we have always helped each other. I want you to know that you can count on me.”

Then I told her that I had started to write down things to refresh her memory about the things we had done during our 55 years together. She liked that. Then she said, “I want to do just a little bit at a time.” I told her we would take it slow and easy.

We must have talked 30-45 minutes going over the same things. This was not like the anxiety attacks she has had. Except for her words, and, at one point, a few tears, she was very calm and seemed to have a determined attitude about getting her memory back. She repeatedly said, “I’m going to get my memory back with your help.” Several times she also said, “I feel encouraged knowing that you are going to help me. We’re going to do this.”

Until now, I had thought she might not be able to sense how much of her memory she was losing and, thus, would not be disturbed at all. That is the way it has appeared to me even as she has asked me over and over for help with names and places. I am beginning to see her quiet determination to remember things. Last night’s conversation was the most serious one we have had about her Alzheimer’s. Even this one did not involve our talking specifically about that, but it went directly to the heart of her problem – her memory. She recognizes it. It disturbs her, and she is determined to recover.

Everyone talks about the importance of hope in our lives. Last night, she expressed hope that she could get better. I couldn’t tell her she has Alzheimer’s. That could have dashed her hopes of a recovery. I hope I’ve made the right decision.

It is now 9:40. Kate is still asleep. I can’t help wondering how she will feel this morning. Will she remember anything about last night’s conversation? Will we have another conversation like last night. I’ll just have to wait and see. I do plan to show her what I have written to go in her “Memory Book” I started this week. I don’t have much, but I know that she doesn’t like to be bombarded with information. As she said last night, “I want to do just a little bit at a time.”

I believe I have handled the progression of her disease as well as, or better, than anyone might expect. The hardest part is watching her decline. That is even more painful when I see that she is disturbed by what is happening to her. Last night was clearly our most painful moment during this journey.

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Latest Doctor’s Appointment and Opera Night

Kate’s getting up earlier helped to make the day go smoothly yesterday. We spent about an hour at Panera before going to lunch. Then we had just enough time to drop by the house to brush teeth before going a routine doctor’s appointment for Kate. This was an uneventful visit. Dr. Reynolds asked Kate how she was doing and if there were any special things she wanted to report. She didn’t have anything. That, of course, is not surprising. Even if she did, she probably would have been unable to remember it. I did mention that she had been sleeping later in the day but didn’t think we needed to do anything special to counteract that. I told him we had continued to keep up an active schedule. He asked that I drop the Ibuprophen I had been giving her. He doubted that the low dose I was giving her (one tablet in the morning and one at night) made any difference at all. I had also cut back on her acid reflux medication. He said it is best to continue as it was before.

From the doctor’s office we stopped by Barnes & Noble for an hour and a half. Then we came home and changed clothes before going to opera night at Casa Bella. I got Kate’s clothes for her. After I had changed, I went to check on her. She was wearing a pair of black pants I had given her but had not put on the top I picked out. I found it in the bathroom and brought it to her. She put it on. As she did so, I noticed that she had put the black pants on over the tan ones she had worn all day. I decided not to say anything. A few minutes later, I saw her going through a drawer in her bedside table. She took out a small plastic container that had several ball point pens. She also found a glove and put it in the tray as well. She took it with her to the car. We were off to Casa Bella.

As Kate started to get out of the car at the restaurant, I noticed that she was about to bring the pants she had brought to the car earlier in the day. I told her I thought she could just leave them in the car. She accepted that without a question. It has been a good while since she has expressed any reservation about following any suggestion I make. I feel this is further evidence of increasing sense of dependence on me to know what it best.

The evening went well. A new couple sat with us and the couple we always sit with. We had a good time getting acquainted. At one point, the wife asked Kate about her work. She said she was retired and had been a teacher. The husband asked her where she taught. She was stumped and said, “Around Tennessee.” I interjected and gave the names of the schools. The wife asked her what she taught. She was unsure what to say. Once again, I spoke up for her and said that she had been an English teacher and school librarian. The rest of the evening went smoothly. It had been another nice day.

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An Interesting Experience while Donating Platelets

While the sitter was with Kate yesterday, I donated platelets. I’ve been donating platelets for about three years following many years of whole blood donations, so I am acquainted with most of the people who work in that section of the department, and they know me. That makes the donation time a bit of a social occasion as well. Yesterday I got a bonus.

About an hour after I had been there, a woman took the chair (lounge?) next to me. Since my last visit two weeks ago, they have added individual TVs at each chair. I decided to pick out a DVD of Seabiscuit to pass the time instead of reading. It turned out the person getting me hooked up couldn’t get the TV working. I put the DVD beside me on the chair. The woman noticed the title and said it’s a good movie.

That led to a very pleasant hour of conversation. Because she had asked about Seabiscuit, I asked if she was “into” horses. She answered affirmatively, and we were “off to the races.” I didn’t mean to imply that I know much about horses and the culture surrounding them. I know next to nothing. I recently read Motherhood: Lost and Found by Ann Campanella. That may seem like an unlikely book for me, but it is her story of being a caregiver to her aging parents at the same time she was trying unsuccessfully to have a baby. So where do horses fit in? Well, it turns out that she has a passion for horses. She weaves stories of her and her horse along with her own story about her mother’s Alzheimer’s. As you can see, and Kate would confirm, I digress. I just wanted to say that was the extent of my knowledge of the horse world.

While I don’t know anything about horses, I do enjoy learning about the variety of things to which people devote themselves. So it turns out this woman, Irene, I believe, has been involved with horses most of her adult life. I had one question after another, and she had one informative answer after another.
It turns out that she is a fox hunter though retired for two years. She opened up a whole new world. I knew nothing about fox hunting clubs, the procedures followed on a hunt, that the people who run the clubs know where the foxes live, and that the foxes become accustomed to being hunted, and especially that some clubs don’t even use foxes at all but the scent of a fox to attract the dogs. I asked some dumb questions like “Do you actually kill the fox?” They don’t. (You probably knew that.) I found the conversation to be fascinating.

Beyond her interest in horses and fox hunting, she has owned her own construction business. Most recently, she has been a subcontractor in the construction of a power plant. I was glad that the TV was not working. This conversation was much more interesting.

As I left, I couldn’t help thinking of my dad. He would have enjoyed this conversation himself. He, too, was fascinated by such things. I might add that my brother, Larry, has similarly broad interests. The Creighton boys are easily entertained.

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Up Earlier Today

Just as I was about to think I would have to wake her again this morning, Kate walked into the family room dressed and ready for Panera. We arrived ten minutes ago, and she is well into her muffin. This should be about perfect timing for us to get to lunch around 11:45 and still leave us a little time before leaving for her doctor’s appointment at 2:00.

When she met me in the family room, she was carrying a pair of black pants, black socks, and an almost completely used roll of toilet paper. She brought all three with her to the car. She asked me to wait a minute before I back out of the garage. She was holding the toilet paper and said, “I want to put these on.” She had obviously thought the toilet paper was a pair of socks. With a puzzled look on her face, she put it down and picked up the black socks. She is wearing dark tan pants and shoes that are a light tan, almost yellow. I could tell she didn’t like the idea of wearing black socks and asked her if she would like me to get her another pair of socks. She said yes, and I went back in the house.

I came back with a pair of lightweight, beige socks that are a little heavier than hose. She approved. Teasing me, she said, “I didn’t think you could do it.” Teasing her, I said, “Aren’t you worried about hurting my ego?” She responded, “Your ego could use a little of that.” I get a kick out of her playfulness. She was never like this before Alzheimer’s. This kind of interaction has been beneficial to us in the past few years.

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A Day of Names

Kate frequently asks me to tell her my name and the names of our children and grandchildren. Yesterday was different in that it occurred so much. I suspect if we hadn’t had a sitter in the afternoon she would have asked me more times. As we left for Panera yesterday, she said, “What is your name?” She asked again at Panera. She also asked, “Where are we?” That is something else that occurred more often than usual. I often answer, “Knoxville where we have lived for 47 years.” She always expresses surprise about the number of years. This happened several times yesterday. A few times were so close together that even I was surprised she had no recollection of how long we had lived here. She also asked me where she was born.

When we got into bed last night, she said, “Do we have children?” I said, “Yes.” She said, “Two.” She asked me to tell her their names. It was said as if she were testing me and not seeking information for herself. It was clear as we talked that she really couldn’t remember. In a few moments, she asked me to tell her the names of our children again. Then again in another few minutes. When I tell her, she almost always follows that by saying how proud we are of them.

She asks the names of our children far more than any other names. As I have noted before, I take that as a measure of a mother’s love. She loves them dearly and is trying to hold on to their names as Alzheimer’s ravages her brain.

Perhaps because she has slept late recently, she has been quite talkative once we got into bed the past two nights. Her conversation (as it does during the day) focuses on the things she can remember – her mother and father, our marriage, and our children. She finds comfort in talking about these things. She talks mostly about our marriage, about our being well-matched, about our being meant for each other, that she would marry me again if she could, and that we have been so fortunate. I share her feelings. It makes me think of my parents and her parents. It was the same with them.

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I see the coming of a new morning routine.

Once again, I had to wake Kate this morning; however, it was a little easier to get her up than yesterday. Once again, to save time we went to Panera for lunch and got back just before the sitter arrived at 1:00.

Up until now, I have thought of her sleeping late as erratic. In fact, that’s what I said in the message to her doctor just yesterday. It now looks like we are in the process of a fundamental change in our normal routine. I have a feeling of regret about this. I feel for her as I know this signals a new stage of her disease.

I also feel for myself because it means reducing my own social contact. It’s been over two weeks since I saw one of my favorite acquaintances at Panera. For the past two or more years, he and his wife and Kate and I have shared a few moments of conversation almost every morning. He and I are quite different politically and religiously, but we both enjoy social contact and conversation. Both of us like to talk, but each gives the other a chance to speak. I miss him.

In some ways, I wish I had a sitter for the morning rather than the afternoon. The problem is that neither of our sitters is available for those hours. In other ways, it’s probably a good thing for me to have a block of time to myself. There are household responsibilities that I could take care of. I know I won’t have any problem finding productive ways to occupy my time. As time goes by, I might very well see that simply relaxing would be a productive way to take care of myself. Of course, I will also increase our in-home care. When that happens, I will be freer to get out.

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Another Slow Start

At the moment, I am at Whole Foods where I am waiting for Kate who is getting her monthly facial. I always schedule these appointments at 2:00 to give her plenty of time to get ready. Today that was almost not enough. After getting up earlier than usual yesterday, she slept late again today. At 11:45, I tried to wake her. She was not eager to get up but not cross. She mostly just ignored me. I put on some music in the bedroom thinking that might provide a gentle wake up. By 12:15, she was still not up, so I reminded her of her appointment and that I wanted to make sure she got lunch first. That did the trick. She was up, but she didn’t move any more quickly than usual.

We went to Panera since it is close to both home and the spa. We arrived there at 1:25. I decided to save time by just getting her a muffin that she would be able to start eating right away while they prepared a sandwich and salad for me. I got sliced apples with my order so that she could have them. By the time we both finished what I had gotten, it was time to leave. We arrived at the spa at 1:59. I was glad that I never really had to push her. As she was getting dressed, I explained that we would have very little time for lunch and that she needed to get dressed if we were to eat at all. She responded very calmly and never changed her speed.

Earlier this morning, I sent an update on the patient portal for her doctor’s medical practice. Kate has a 1:45 appointment with him on Thursday. I conveyed the change in her sleeping habits although I am not expecting him to make any changes in her prescriptions. I definitely don’t want her to go back on Trazadone. That would probably exacerbate the problem. I hesitate to call this a problem, but it is a bit of one for me. It would be nice if I had a better idea of when she is going to get up. I had thought I was pretty safe making appointment for 2:00. Now it looks like that may be a little too early.

More than that, I think I am bothered by its altering my schedule. Since I get up early, I am ready to eat about 11:30 or noon. Waiting until 1:30 or 2:00 means we don’t have much time between lunch and dinner. That, too, is my problem. Kate is not at all affected by this. If this is something that becomes a regular pattern, I will probably make sure that I have something at home to tide me over until she can get up. Adapting to change is not something new. It will work out.

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The Interplay of Kate’s Rational and Intuitive Abilities

There are many things that Kate has forgotten. Most of those involve her rational thought processes.  I’ve often mentioned that the names of people and places probably top the list. This doesn’t mean that they are permanently forgotten. That depends on how well she has known the people or places before and how often she is still in contact with them. Names of people she hasn’t see in a while are gone though she often recognizes the names when I bring them up. She doesn’t always remember our children’s names or that we even have children. As I have said before, she sometimes forgets my name and her own. The same goes for all of the restaurants we visit on a weekly basis. We have eaten at Casa Bella for at least 45 years, but she usually fails to remember the restaurant’s name. She no longer remembers that we live in Knoxville. The same is true for her hometown of Fort Worth.

As I said in a post a few months ago, forgetting a person’s name doesn’t mean that one has forgotten the person. People with dementia continue to hold many of the feelings they have for people. Our emotions, which arise from our senses, continue to guide us in situations where we can’t remember the associated names. This involves intuitive abilities. I recall my mother’s telling me she didn’t have a family. I asked about her son. She told me she didn’t have a son, she responded to me in just the same way she always had. I can hear her now when she said, “You’re such a nice boy. You always were.” You may be thinking, “This doesn’t make sense.” I would say there is much that doesn’t make sense from a rational standpoint.

Despite the weakness in her rational thinking, Kate still thinks at least some of it matters. For example, several months ago when I mentioned the film Darkest Hour., she wanted me to tell her about it. When I said it was a WWII movie in which Churchill played a major role, she wanted to see it. She loved the movie, but I know she couldn’t have understood much of it. I am equally sure that she was able to experience feelings about it. She knew it was about the war. She still has strong feelings about historical events and people even though she would never remember the names or events without any prompting.

Last night while I was watching the PBS Newshour, she worked jigsaw puzzles on her iPad. Late in the show they had a segment on sex trafficking. As they talked with parents about their daughters who were victims of this crime, she audibly reacted with disgust. She wasn’t even watching the TV. She was sitting across the room eyes focused on her puzzle. Her ears picked up the audio, and she understood enough to react to it.

Another way in which she seeks to stay in touch with rational thought occurs on a daily basis. She asks me to tell her the names of people and places. She feels it is important to remember. She rehearses them, but they are quickly gone. When I have the news on in the car, she frequently asks me to explain what they are talking about. This is a big challenge because most of my explanations are delivered in more than a sentence. Before I get to the point at the end, she forgets what it was that came before. Thus she doesn’t understand what I am saying. Then that I do what I should have done to begin with. I try to express in a single, simple sentence what the issue is. That takes care of it. My point is that she still has an interest in things that are happening in the world and around her. She tries her best to understand and remember. I feel that that she can’t ever achieve her objective. Fortunately, she doesn’t appear to experience much frustration over it.

She is trying very hard to be more organized. Most of this involves getting out the clothes she is going to wear. Often this occurs before she gets ready for bed as she did last night. She walked into the bedroom with pants, two tops, and a pair of shoes. I noticed that she didn’t have a night gown and asked if she would like me to get one. She did. When I brought it to her, she put it in her arms along with the pants, tops, and shoes. Then she asked in a whisper, “Are we staying here tonight?” She has asked this question quite a few times before. It illustrates a breakdown in her rational thought. At the same time, she is working to be more in control of her life which requires her rational abilities. It is common for her to take the clothes to the bathroom where she takes her shower and forget she has done so. Then she goes to her closet and gets something else.

A related example is her desire to create photobooks of our family like the ones her brother Ken has done. She hasn’t done any actual work on a book in more than two years. On the other hand, it is not uncommon for her to tell people she is working on them. Frequently when I mention something that we have experienced during our marriage, she will say, “Remember that. It goes in the album.” It is something she remembers and has a strong desire to do. It also requires a lot of rational thought to accomplish that task. She will never make her album, but I think she gets some satisfaction by thinking of it as an ongoing project of hers.

As I hope you can tell, there is still much about Kate that is like it was in the past. She wants to live as she did before, an impossible challenge.

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Some things disappear. Others show up. Kate’s esthetic ability is still working.

It has been seven and a half years since Kate was diagnosed. Over the past four years or so, a lot of things have disappeared. Some things have re-appeared. Others have never turned up. Occasionally, things that have been intentionally stored away have suddenly appeared. That happened just yesterday.

Late in the afternoon or after we returned from dinner, I noticed that there was a display of old catalogs on the table next to my side of the bed. I should have recycled all of them originally, but I had put them in a drawer of the table and quickly forgot they were there. Previously, I had a clock radio on the table. It had broken, and I disposed of it. The table looked pretty bare. It was obvious to me that Kate had gotten into the drawer and found the catalogs. She didn’t look at them as something to be thrown away. Instead she thought of them like magazines one might display on a coffee table in a family room.

As I was leaving the room, I noticed something else. She had found a basket of Christmas ornaments and put them beside a bench in our bedroom. She must have found them in a closet and was attracted by them. She wanted them where she could see them. That made me think of a couple of other things that have shown up recently. One of those is a change purse decorated in needle point. It has nothing in it, but she found it somewhere in the house and has been keeping it on the table by her bedside. Sometimes she takes it with her in the car. She found another one and does the same with it. I may have mentioned that she found a book that she must have liked. I know that I have seen her looking at the book cover, and she has taken the book in the car before.

This caused me to think about The Dementia Handbook once again. You may remember that the author distinguishes between our rational and intuitive (via our senses) abilities. Her main point is that we should deal with people with dementia by de-emphasizing the loss of their rational abilities and focus on their intuitive ones. The latter last much longer and provide the person with much pleasure.

This makes me look differently at her collection of things that have been in closets and on shelves. She still has much of her intuitive abilities. She appreciates beauty, and I think she sees beauty in lots of little things around her. Some of these are things that she purchased in the past. She is reconnecting with them. There is often little practical benefit to her now. She doesn’t carry money or ID to put in a change purse. She just thinks it’s pretty. That’s enough. She derives her pleasure from holding it, looking at it, and having it around. Although there are still mysteries as to why she was digging around the house for different things in the first place, I think I understand why she picks out some things. They are things for which she has a special feeling. That comes from her intuitive side.

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Another Day Without Panera (And we survived. )

As I reported in my previous post, Kate was slow to get going yesterday. We skipped Panera and went straight to lunch. We didn’t arrive at the restaurant until 1:50. It was after 3:30 before we got back home. We spent almost an hour relaxing in the family room when she said she want to rest a while. Shortly after that, our son, Kevin, called. I went in the bedroom to see if she would like to take the call, but she wanted to rest. That’s just one more change that is taking place. In the past, she would have jumped on the phone right away. Kevin and I must have talked 45 minutes or so. She continued resting another thirty minutes.

When she was up, it was already an hour past our typical time for dinner. I didn’t think that was a problem since we had eaten lunch so late. By the time we got home, it was 8:15. I decided not to watch another musical. We just relaxed a short time. She surprised me by putting away her iPad and going to bed right after 9:00. I had been afraid she would not be able to go to sleep after sleeping so late and then taking a late afternoon nap. I was wrong.

I wasn’t sure what to expect this morning. Not surprisingly, she was up early and was ready for Panera at 8:45. Most of the time she isn’t even up by that time. So here we are. That makes me happy. We should have plenty of time together before the sitter comes. We should not have to rush our lunch. I suspect, however, that she is likely to get tired and want to go home in another hour. That would be close to the time I would get her lunch. We’ll see what happens.

Upon arrival, I noted another change that is occurring. Typically, I set up her iPad at our table and then go to the counter to order and pay for her muffin and our drinks. She goes directly to the drink dispensers and returns to the table. I wait near the table until she has her drink before going to the counter. Otherwise, she doesn’t know which table is ours. Today she approached me and said, “Where do you get ice?” This is something she has been doing for years. Once again, I shouldn’t have been surprised. Recently, I had noticed some confusion when she was at the dispenser. I thought it was just trying to decide what drink to get. Now I think it must be all the all options she has. Like most dispensers, the ice is right among the various drinks. It can be confusing, especially to someone with Alzheimer’s. On one or two occasions, she has given her cup to me to get ice and her drink. This may become our new normal.