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Lots of Unpredictable Things, But There are Daily Patterns

I have come to appreciate the experiences of other caregivers who report the unpredictability of people with dementia. After seven or eight years of a rather steady daily routine, I don’t claim to be able to predict what Kate will be like from one moment to the next. There is one pattern, however, that seems to have emerged. Mornings are the most challenging times. The biggest problem is Kate’s waking and being confused or frightened. Thankfully, this doesn’t occur often, but it is strikingly different and more unpleasant than the way she has been in the past.

My way of making sense out of these experiences is to think how I would feel if I woke up and didn’t know where I was, who I was, or what I should do. Fright seems a natural reaction. It also makes sense to me that after being asleep all night, Kate hasn’t had any external stimulation that would give her a sense of comfort. Once she gets up and is exposed to the house, to me, and our routine, she feels more at ease. This usually occurs before we leave for lunch.

Some days I have to work harder, but very gently, to get her up and oriented. For example, yesterday morning I awoke about 5:00 and quickly decided to sleep another hour before getting up. At 5:45, Kate said, “Who is here?” I said, “I am.” She said, “Who are you?” I said, “Richard.” She didn’t say anything. I asked what I could do for her. She said, “I’m scared.” I asked if she could tell me what had scared her. She said, “I don’t know.” If it were not for our previous experiences and what I have learned about dementia, I might have probed to see if I could identify the problem. As it was, I know that when she says, “I don’t know,” I’m not likely to learn anything by asking questions.

I told her I wanted to help her. She asked my name again. Knowing that this might be a day when she sleeps later than usual, I asked if she wanted to go to the bathroom. She said she did and asked where it was. I told her I would show her. She was unsteady and confused.

When I got her back to bed, I asked if she wanted me to stay with her. She did. I got my laptop and took a chair beside the bed. I also played some relaxing music while she went back to sleep. Then I went back to the kitchen. It was over an hour before I went to the bedroom. I told her I wanted to invite her to lunch and asked if she would like to go with me. She did and got up and dressed rather easily. I think the key was not pushing her. It might not have been as easy for me if she hadn’t gotten up so early in the first place. We had plenty of time. We were the first people to arrive at the restaurant. That was a first.

She is generally all right in the afternoon, but in the past few months, she has experienced more delusions and/or hallucinations. This typically happens after she has been resting a while. I think that while resting she is drifting in and out of sleep and appears to have had a dream. She often talks to someone who is “not there” or to say something to me that suggests I have experienced whatever she has just experienced. The good thing is that she isn’t disturbed at all. Sometimes she is especially happy. That often happens when she believes she has an hallucination involving someone she apparently hasn’t seen in a long time. I say that because of the look on her face and the sound of the voice.

We had an experience yesterday afternoon that is a good example. She had been resting for more than two hours, and I walked into the kitchen for a few minutes. When I walked back into the family room, she got a big smile on her face and pointed to me. I said, “Well, I guess you recognize me?” She said, “Who are you?” I said, “Me.” She asked my name, and I told her and asked if it rang a bell. She wasn’t sure. I said, “I bet I know your name?” She said, “What?” When I told her, she said, “How did you know?”

I walked over to her and told her I knew a lot about her and her family. I don’t recall exactly what she said after that, but she conveyed that she didn’t know the words or how to say what she wanted to express but wanted to learn. She hoped I would be able to stay around so that she could learn from me. I told her I would be happy to teach her. I also said that she had a number of photo books with lots of information about her father’s and mother’s families as well as one her brother had given to her.

By then, it was time for dinner. I told her we could look at some of the books after we got home. As it turned out, she was tired and wanted to get ready for bed. She had forgotten about the books, but we will soon look at them as we do so often.

My explanation for this experience is similar to what I said about her morning fright. She isn’t frightened, but she has gone through a period of time (as long as two hours) when we have had minimal interaction. It’s not quite like the lengthy overnight absence of external stimulation, but it results in a sense of confusion. It’s as though the circuits of the brain have been asleep and need time to wake up.

Our evenings between returning home from dinner and going to sleep are clearly the most predictably happy and relaxed times of the day for both of us. By the time I get in bed, she has been there at least an hour. Except on the few occasions when she is sound asleep, she is always glad to see me. We often comment on having a nice day and express our love for each other. Then we peacefully drift off to sleep.

I believe the predictability relates to the fact that we have no commitments after dinner. It is simply a time to relax. I do try to keep to a routine bedtime for both of us, but that seems to occur without having to work. For at least an hour, I play YouTube music videos on the TV. Then I put on even more relaxing music on our audio system. It’s a peaceful time of the day.

Looking to the future, I suspect there will be a time when we start having lunch at home and, perhaps, separately. Doing so would prevent rushing her. Right now, I believe it is more important for us to maintain our active lives outside the home. In the meantime, I will continue to make the mornings as free of stress for Kate as I can. That means waking her gently and offering her comfort when she needs it.

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Reflecting on Our “Good Days”

At this stage of Kate’s Alzheimer’s, I think a lot about the amount of quality time we have left. I don’t mean that I bask in sorrow. I don’t, but I recognize she is in the last stage when we are likely to make more adjustments to our lives than we have done before.

At the moment, however, I am particularly struck by the “Good Days” we have. It not only surprises me; it keeps my spirits up. We had two of those days this weekend. I would like to be able to take credit for them, but I think the fundamental cause was Kate’s mood. She was in very good spirits both Saturday and Sunday.

I might also expect that her good mood was accompanied by a lack of confusion, but that isn’t so. Saturday, she appeared to be rather clear-headed except for wondering where she was. I don’t recall her asking my name. That happens off and on. Sunday morning, she was very confused. She didn’t know my name or hers and couldn’t remember them well enough to repeat them. What made me feel good was that she didn’t seem disturbed at all about not knowing. I am thankful that is typical.

In addition to her good mood, our time together seemed special. Our obligations were minimal. The only official commitment was our dinner reservation Saturday night. She was up earlier than usual both days. We didn’t have to rush. That kind of schedule is the best for her and, thus, for me as well.

We also had a couple of special moments on Saturday. Both occurred after resting in the afternoon. One of those was my reading her a portion of a book about her family’s wedding veil. I’ve read it to her multiple times in recent weeks, but she is always taken with it. She did get tired and wanted to rest before we got well into it.

The second experience was after her second rest. She commented on a few things in the family room that led me to suggest that I show her some of the other rooms. On the way to the back of the house, we passed several photos and stopped to look at them while I told her a little about each one.

The next stop was our guest bedroom. Of course, she had no recollection of it at all and liked what she saw. She got tired of standing and asked if she could sit in a rocking chair. I saw a photo album of our children during their earliest years. We spent quite a while looking at it and never got to another room.

When we finished, it was time to get ready for dinner. This was the only moment in the day that could have become a problem. I had planned a nice Valentine’s dinner at one of the restaurants we usually visit for lunch. I suggested we change clothes and had picked out exactly what I wanted her to wear, but she didn’t want to change. I told her we were going out for a nice dinner, and I was going to put on something a little nicer. She was fine with that but wasn’t going to change. I didn’t push her.

A few minutes later after I had changed, she asked what I wanted her to wear. I told her I would get something and brought her the clothes I had picked out. She had apparently forgotten the conversation we had just had a few minutes before. I helped her change, and we were off.

The dinner itself went as I had hoped. We were welcomed by the manager, our server, and another server who sometimes works as a hostess. They had selected a corner table that was perfect for the occasion. The meal itself was quite good. In addition, a couple we know from our music nights at Casa Bella were seated at the table next to us. I don’t recall our talking about Valentine’s Day at all or anything else especially romantic. We just had a good time together.

Kate was up early Sunday morning. We spent a little less than an hour at Panera before returning home where she rested an hour before leaving for lunch. The restaurant was unusually busy. Consequently, it took longer to be served, but we had a good time. I haven’t said anything in a while about her asking Sinatra’s name when she looks at his mug shot, but that hasn’t let up. She is well-aware that she repeatedly asks and wonders why she can’t seem to remember it, but she doesn’t appear to be very disturbed.

She rested after we returned home with music playing as usual. She awoke about an hour before dinner. I suggested we take a look at a few things around the house. We began with some photos in the family room. As often as she has looked at them, I am amazed and happy that she enjoys them just like it was the first time to see them.

From there we went into the living room and dining room where I showed her a number of things that came from her parents’ home. I enjoy telling her the stories behind each of the items, and she was entranced. It was another special moment.

We are both fortunate that repetition has not diminished the pleasure for either of us. She can’t remember, so it is always new. I like telling her things she can’t remember and seeing her reaction as I tell her. I read a lot about other caregivers’ experiences and know that many of them are bothered by so much repetition. I wish I knew how to help them. My experience is different. Whatever the reason, we have been able to maintain a relationship that has been important in helping both of us adapt to all the changes we have had to make. She feels dependent on me and is normally responsive to the things I want her to do. I want to deserve her trust and work hard to make her life as happy as I can. One of the ways I can do that is to answer her questions and do the things she enjoys so much. I believe each of us loves the other more now than at any other time in our marriage. I think that carries us a long way.

I continue to be mindful of the pleasure she and I can experience through her intuitive abilities. I like to think this is something from which other caregivers could benefit to make their loads lighter. At the same time, I recognize the likelihood that many of them are facing other challenges that we have not faced. Among those would be health and financial constraints. I feel for them and am grateful that at this late stage of Kate’s Alzheimer’s, I see little, if any, loss of pleasure that comes from music, beauty, and associations with family. How long will this last? We will see. I am hopeful that it will continue for some time.

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Alzheimer’s is Making Its Presence Felt

As if I needed further confirmation, yesterday was another time when Alzheimer’s seems to be taking over our lives. It was Monday, my Rotary day and the day our sitter arrives at noon. I turned on some music to gently wake Kate around 10:40. That should have given us plenty of time to be ready, but that was not to be.

She was still asleep when I went to wake her at 11:00. She smiled and was in a good mood, but it was also a morning when she didn’t want to get up and didn’t recognize me. I explained that Cindy was coming to take her to lunch and that I would be glad to help her get ready. She said, “I’ll get up.” This is what she said repeatedly the day before and on the few other occasions when she didn’t want to get up. I tried not to push her because she is then defiant and isn’t going to comply.

I tried some music that she liked. We even sang a couple of songs together, but she wasn’t going to get up. I accepted the fact that she wasn’t and got her a breakfast bar so that she would at least get something in her stomach.

When Cindy arrived, I briefed her on the situation. I also took her to the bedroom to show her the clothes I had laid out for Kate. I told Kate goodbye, and she was quite accepting of my departure.

I had intended to go directly to the Y after Rotary. Instead I put in a call to Cindy to see how things were going. She didn’t answer. I decided to drop by the grocery for a few breakfast items and then go home to check on Kate. When I arrived, I discovered that Cindy had gotten her up and dressed and had given her a breakfast bar and a Dr. Pepper. We chatted briefly, and Kate seemed back to normal. She didn’t express any great enthusiasm to see me.

Cindy still had another hour and a half before she was to leave. I was encouraged by how Kate was doing and decided I would leave. I told Kate I had a few more errands to run and would be back a little later. She very adamantly said, “You are not.” At the time, she was eating a breakfast bar. I remembered that it was the last one and told her I forgotten to buy more (which was true) and needed to go back to the grocery store. She accepted that. I went back to the store. Then I dropped by Starbuck’s for a while before returning home. This was a time that I really appreciated the break and wished there had been time to go to the Y.

After Cindy left, we had about an hour before we would normally go to dinner. I suggested that Kate and I look through one of her family photo books. She liked the idea. We sat on the sofa and started to go through one of them. She was interested, but, within five minutes, she said, “Would you mind if I . . .?” She didn’t finish her sentence. I knew she was tired. She wanted to lie down for a while. I told her that would be fine. She must have been very tired because she actually went to sleep. An hour later, I asked if she was hungry, and we went to dinner.

She was tired when we got home. I put her in her chair in the bedroom and gave her the iPad. Then I turned on the evening news while I put fresh sheets on the bed. I soon noticed that she was just staring at the TV and hadn’t used her iPad at all. I asked if she would like to get ready for bed. Then we went through the routine of getting her teeth brushed and into her bedclothes. She was very cooperative. I put on some YouTube music videos that she likes, and she was asleep very shortly. That is unusual. I was especially surprised after she had gotten up so late and taken a nap just before dinner. She must have been very tired.

It was two weeks ago yesterday that we had our first experience like this. That was the day I thought she was depressed. None of the subsequent experiences made me think she was depressed. One or two times she just seemed tired. Saturday it seemed like a combination of being tired and being dehydrated and, perhaps, experiencing low blood sugar. Yesterday, it seemed to be a simple case of being tired.

I should add that almost simultaneously she has been unsteady on her feet. I say almost because she has experienced mobility problems for a while, but she has been particularly uneasy walking during the past two weeks.

I have reflected more on her symptoms. It seems like her body is in the process of shutting down. That is to be expected with Alzheimer’s and other forms of dementia. Part of the problem for me these past two weeks is my desire to continue living as we were. I plan to adapt to the current changes by accepting the fact that we may not be able to go out for lunch and, perhaps, not dinner on a regular basis. There are a variety of other ways that I can arrange to take care of meals.

The bigger issue for me is the loss of social contact. That has been very important for both of us; however, that is also something we should be able to manage. It is no surprise to me that we are facing this issue. At the time of Kate’s diagnosis, I never imagined that we would be able to live so “normally”  for so long. Of course, it hasn’t been normal at all, but we have been able to stay active. The suddenness of the recent changes has led me to respond as though this might be something that passes as quickly as it came.

I think it is good for caregivers to know what we can and cannot change. I have already accepted many things that are beyond my control with Kate’s Alzheimer’s. This may be one more change to which I will adapt. If this isn’t the time, it won’t be long until it is. I am ready to accept that.

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Art Appreciation and Kate

Many times I have given examples of Kate’s interest in “things of beauty.” Most often, this has involved all the “green” (principally trees, but also shrubs) she sees wherever we are, at home or on the road. It also includes the paper doilies she occasionally brings home from one of the restaurants we frequent. She keeps them in several places in the house. About half a dozen are on her bedside table where she enjoys them when she wakes up in the morning.

I have been able to appreciate what she sees in each of these things, but once in a while she surprises me. She did that just before the sitter came yesterday. I was seated across the room from her when I heard her say, “This is beautiful.” I thought she might be talking about the orchid plant on the table next to her. When I looked, I discovered that she was entranced by the remote control for the TV.

For years, I have had a periodic discussion about art with my two email friends from college, Tom Robinson and Bruce Morton. Tom is a retired philosophy professor, and Bruce started on his PhD in philosophy before developing other interests, one of which is photography. Our discussions revolve around the same question. “What is art?” I have always held the position that art, like beauty, is in the eye of the beholder. I know mine is a pretty loose definition, but it seems to work for me given the variety of creations that are officially called art and displayed in the world’s finest museums.

The beauty Kate saw in the cable TV remote was something of a stretch even for me, but I hold to my position. In fact, I think it’s an excellent example. Most, if not all art, seems to possess qualities that involve color, shape, texture, and subject matter. When I took a more careful look at the remote, I began to consider these qualities. I could see how she looked at it as a thing of beauty. It has forty-four individual buttons of different shapes, sizes, and colors and organized around different functions. The mount on which these buttons are located is a reasonably attractive shape and presents a contrasting color for the buttons themselves.

Yes, I think the remote is, or could be called, a work of art. I am sure that it’s designers would agree. They no doubt spent a long time working to make it both functional and attractive . It’s really an iconic symbol of our time. If someone like an Andy Warhol were to have painted a “portrait” of one in much the same way he painted the Campbell soup can, surely many would see if as art. I know I’ve seen stranger things at museums like MOMA in New York.

Of course, I am just playing fun and games with this topic, but there is a serious side to it. That involves the ability of people with dementia to see and appreciate things that most of us overlook. Kate’s life is filled with those. Wherever we go, she sees things that catch her attention. It is usually for something more understandable than a remote control, but also something that I was about to walk by without appreciating. Increasingly, I have come to believe that in the absence of her rational abilities, her ability to sense the world around her has increased to compensate for that loss. There may be a lesson in this for all of us without dementia. It’s a wonderful world, especially when we stop and consider the little things we take for granted. They may be of greater value than we thought.

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Reflecting on our Son’s Visit

Since I first informed our son, Kevin, and our daughter, Jesse, of Kate’s diagnosis five years ago, Kevin has made a point of visiting us for long weekends several times a year. I am sure that he has benefitted by making the most of his time with Kate. It has also given me a lift and provided Kate with much pleasure as well.

During his recent visits, her memory of him has faded. That means she hasn’t had the pleasure that accompanies the anticipation of his coming. She does, however, enjoy his presence and connects with him as though she recognizes him as her son in the same way that she relates to me when she doesn’t remember that I’m her husband. She is very at ease with him.

During each visit there are special moments. Their time together on the afternoon of his arrival was one of those. They spent about two hours looking through one of her family photo books. It was the kind of experience I had hoped might occur after I informed both children about Kate’s diagnosis five years ago. I went to the grocery store when they first started. When I returned home, I let them continue this personal time to themselves but joined them a little later.

Of course, life isn’t a constant stream of such moments. Our lives consist of many routine activities that, by themselves, don’t mean anything special. When they are shared with people you love, however,  they are special in their own way. Kevin’s visit was a good example of that. He was here for his high school class reunion, so that was a highlight for him. His time with us, however, was spent going through our activities of daily living.

As Kate’s care partner and Kevin’s father, I am glad that he was able to catch a glimpse of what our lives are like. Since he lives almost 1200 miles from us, it’s hard to know what is really going on. He actively reads this blog, but I felt even that might not fully convey what living with Alzheimer’s means for us.

You might ask why this matters to me. It goes back to the time when my father was caring for my mother who had dementia. The last eight years of my mom’s life, my parents lived right here in town. I was with them a lot, but I didn’t know as much as I should have. I have only realized that as I have cared for Kate. Dad never shared much about his life as a caregiver or Mom’s as a person with dementia. I want our children to have a better understanding of our lives. That was a major factor in my starting the journal that eventually became this blog.

In addition, our son is a care manager. His whole career has involved caregiving. It seems appropriate that he should be fully informed about his parents’ situation. Not surprisingly, he has taken a genuine interest in staying in touch as Kate’s Alzheimer’s has progressed.

Although not in a career that deals specifically with caregiving, our daughter, Jesse, works a lot with seniors and takes a great interest in their lives. I also want her to know about us.

That said, Kevin’s visit was an especially good one because he got to see a very representative snapshot of how Kate is doing and the way in which I care for her. During past visits, her symptoms were much less noticeable. She has changed significantly since he was last here in March. He saw how much her memory has faded. He also was here when she didn’t want to get up in the morning and her desire to rest in the afternoon. What is more important to me is that he could tell how much we still enjoy life and each other.

Because Kate slept late while he was here, he and I had an opportunity to talk about our mutual observations. I am often concerned that my blog posts don’t adequately express what our lives are like. I was pleased to hear him say that he thought there was a pretty good match between what he had read and what he observed for himself.

Since his career is in eldercare, I was eager to hear how he thought our own experience compares to that of other couples living with Alzheimer’s or another form of dementia. My personal impression is that we have been exceedingly fortunate compared to most others. He confirmed my impression.

We were also able to talk about the future. We discussed my plans for a move to a continuing care retirement community in another year and a half. I also told him my own desire to work closely with him as well as Jesse as I get older. My exposure to the caregiving memoirs of children caring for the parents has sensitized me to the problems that can arise. In particular, parents often share very little about things their children will need to know when the parents require help. I would like our relationship to be a smooth one with as few surprises as possible.

Considering all these things, Kevin’s visit was a very good one. His attentiveness both in phone calls and visits has strengthened our relationship and set the stage for a bright future.

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Noticing the Signs of Dementia

Earlier this week I saw the following tweet from Dr. Oz.

I recently found out that my mom, Suna, has Alzheimer’s disease. Hearing the official diagnosis was devastating. But just as painful for me was the realization that the signs were there all along. I had just been overlooking them.

His tweet caught my attention because I believe his experience is very common – and with good reason. My mom also had dementia, but I have no idea how long she had experienced the early signs. She and my dad lived in South Florida while Kate and I lived here in Knoxville. They made their decision to move here in 1993. At the time I knew they were experiencing aging issues common to people who are eighty, but it never crossed my mind to suspect that she might have dementia. I don’t even recall the time that I recognized it for myself. I know it was earlier than 1998 when her doctor’s social worker gave us the results of her routine memory test. She was very careful in the way she told my dad and me. She didn’t want to shock us. She needn’t have worried. We were not surprised and told her we were aware of the problem.

She died in November 2002, just four years after the diagnosis. Looking back, and given what I know now, I believe she was at Stage 7 of the 7-stage model of the progression of Alzheimer’s at least a year or two before her death. I am sure that Dad must have known the problem before their decision to leave Florida even if he didn’t recognize it as dementia. He never said a word to me before the diagnosis and very little afterwards. What I knew came only from my personal observations. I had arranged for their purchase of a condo that was near our home, and was with them a lot. Yet, when the doctor suggested it was time for hospice a few months before her death, I was surprised. How could I have been so blind?

I have a better understanding now that Kate and I have lived with the disease 13 years since we noticed her first signs. I believe there are two interacting reasons. First, it makes a big difference to be with a person for an extended period of time and even better if you live with the person. That is particularly true in the early stages when so much of a person’s behavior is normal. Second, changes are gradual so that it is difficult to recognize them until the behavior becomes obviously abnormal.

I am pretty sure that I missed the early signs of my mother’s dementia because I wasn’t with them very often. They were still in Florida. When they moved here, I wasn’t looking for them and still wasn’t around her enough to see anything but a memory problem. I attributed that to aging. I recall my mom’s saying, “I don’t know what’s wrong with me. I can’t remember anything anymore.” My standard answer, even after the diagnosis, was “Everyone forgets things now and then. That’s especially true as we get older.” Sometime over the two or three years after their move to Knoxville, I could tell that her problem was more serious than simple aging.

Kate recognized her Alzheimer’s symptoms before I did. For several years, she periodically said, “I think I have Alzheimer’s.” I responded the way I had with my mother and suggested it was part of aging. Over time, I began to realize she was right. That was about five or six years after the first signs.

I have heard others say they were as surprised as I when medical authorities suggested hospice for their loved ones. I believe that, too, is also understandable. It is easy to adapt to patterns of behavior, and not be sensitive to the progression of the illness. My mom had been uncommunicative for a period of time before the doctor mentioned hospice, and I didn’t notice any signs of the end. The doctor, a gerontologist, could see what I couldn’t.

I am also reminded of the passing of Kate’s mother. The day before she died neither Kate nor I had any thoughts about her having only a day to live; however, the caregiver on duty that morning told us she had begun the process of dying. By that afternoon, we could see that she was right. She died just after 8:00 the next morning.

I see how Dr. Oz failed to recognize his own mother’s dementia. It’s not that hard to miss unless you are around the person a lot.

I should make one other point. It makes perfectly good sense for people in their seventies or older to think that their memory problems are normal. That is usually correct, but about one in every seven people over the age of seventy has some form of dementia.

I did not sense a great need to get an official diagnosis for Kate. I knew there wasn’t a cure and felt that it would not change anything we were going to do; however, once we had the diagnosis, we became much more intentional in making the most of our time together. I know that has paid off for us. We are still living well almost nine years later.

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Just Wondering

Yesterday morning I was happy to see Kate smile when I woke her for lunch. I told her it made my day to see that smile, and she beamed. Then I told her I would like to take her to lunch. As she started to get out of bed, she wanted to do it on her own without any help from me. Once she was on her feet, she had second thoughts. She extended her hand for me to guide her to the bathroom. It was the kind of moment I felt as though she knew my name and our relationship. Then she asked who I was. I gave her my name and said that I was her husband. She didn’t believe I was her husband, and I said, “Well, let’s say we are friends, very good friends.” She liked that. The balance of the day there were moments when I was sure that she knew me as her husband but many when she did not. She responded to me the same way regardless. In addition, she continued her expressions of appreciation for my taking care of her.

As I reflect on the day, I would say it was a very good day. She was just as confused as ever, but she was happy. What’s more I was happy along with her. I know, however, that many people would not understand this. For example, before Kate got up yesterday, I made up a Rotary meeting I had missed two weeks ago. As I watched from my computer, one of the club members gave an update on several older members and noted that one of them was “suffering with Alzheimer’s.” That is a frequently used way to say that  someone is “living with Alzheimer’s” or simply “has Alzheimer’s.” I know the speaker is probably not in touch with how the “Alzheimer’s community” (all people with dementia as well as those who are caregivers or professionals in the field) is beginning to talk about the way we refer to the disease. Many of those with dementia as well as professionals advocate our dropping the word “suffering” when we say that someone has the disease because it can be very misleading.

Speaking for myself, I find “suffering” not to be a good descriptor of Kate’s experience. There is no denying the changes in our lives that I wish hadn’t happened. Most of all I hate those moments of anxiety, fear, or panic that she has sometimes experienced. I feel similarly about all the moments when she recognizes that “something is wrong” with her. I wish she had never had Alzheimer’s, but that is clearly out of my hands.

The only thing that she and I can do is make the best of it, and I believe we have done that. We have kept our focus on what I call our Happy Moments. We take great satisfaction in them and try to put aside the sad ones; therefore, describing our lives as “suffering” doesn’t seem accurate at all. I do, however, wonder about the future. I’m not at all sure exactly what it holds for Kate or how I will respond. I am encouraged by the fact that each of us has been able to adapt thus far. I also know that my father managed well and took care of my mother to the end. He experienced a good bit of stress, but my load is and will continue to be easier than his because I have help and plan to increase it as needed.

Even if this last stage brings with it more sadness than happiness, I believe that saying someone is suffering from Alzheimer’s is not an accurate generalization. I think the emphasis on suffering can be discouraging to those who are recently diagnosed at a time when they need encouragement. The truth is that it is possible for a couple to live happily for years before they encounter the most challenging aspects of the disease. Based on the accounts written by other caregivers, I suspect that some of them may have received the diagnosis late in the disease. That left them with a shorter period of the “almost normal” years. During those years they no doubt realized they were happy but not that they were living happily with Alzheimer’s.

Lest I be guilty of making my own inaccurate generalizations, I should acknowledge that there are a variety of different types of dementia. Each can have different symptoms and time frames. In addition, there are differences from person to person within each type. I suspect suffering with dementia can occur among all types, but I think it is not usually an accurate description of the whole journey for those living with dementia. Furthermore, there are individual differences among caregivers in terms of how we perceive our situations. I admit to being the kind of person who sees the glass as “half-full” rather than “half-empty.”

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Kate and The 4 A’s of Alzheimer’s

Last night was pizza night for us. When I told Kate I was going to take her out for pizza, she beamed. That was no surprise. She and I always enjoy pizza. Less than an hour later, we were sitting at the restaurant where our server had just delivered it to our table. I served Kate and then myself and said, “You and I love pizza, don’t we?” She gave me a puzzled look and said, “What is pizza?” I said, “That’s what we are eating right now.” She said, “It’s good.” It was just like her first time to have it.

Kate’s vocabulary has been declining for several years, but I am still surprised when she forgets some of the most common words like pizza and black olives. Like everything else, forgetting in this instance doesn’t mean she won’t remember “pizza” the next day, but it is one other sign of the progression of her illness.

She has a related speech problem that has also been getting worse. She wants to say something but can’t recall the word she wants to say. Sometimes she seems to remember the word, but she mispronounces it. The only example that comes to mind at the moment is “shoes.” When she is getting dressed, she asks, “Where are my shows?” She usually recognizes her mispronunciation and tries again. When she still misses, she says, “You know what I mean,” and I usually do. Sometimes I don’t.

These speech problems are collectively referred to as “aphasia” which is common among all forms of dementia. Kate’s good friend, Ellen, has aphasia that is the result of a stroke and several subsequent seizures. Her problem is similar to Kate’s mispronouncing words. The major difference is the severity of the problem and that the words that come out of her mouth are “gibberish” while Kate’s are an approximation of the word she is trying to say.

I haven’t said anything about aphasia before. I only mention it because Kate’s problem is more noticeable now. Her failure to remember “pizza” led me to Google aphasia and dementia. According to the website of the National Aphasia Association it commonly begins as a subtle disorder of language, progressing to a nearly total inability to speak, in its most severe stage. The type or pattern of the language deficit may differ from patient to patient.

As I browsed through the results of my Google search, I ran across the website for verywellhealth.com. It describes the 4 A’s of Alzheimer’s. I read it in an effort to get a better grasp of where I might place Kate on the 7-stage model for the progression of Alzheimer’s. That confirmed my prior belief that she is in Stage 6 and, perhaps, in the latter part of that stage though still not approaching Stage 7. I should add that there are no clear guidelines about the length of the various stages. They can vary widely from one person to another.

The remaining three of the 4 A’s of Alzheimer’s are amnesia, apraxia, and agnosia. Amnesia requires no explanation. That is the loss of memory we most commonly associate with the disease. Kate has clearly experienced that problem, and it is very severe at this point. The other two terms are generally less familiar to those who haven’t dealt with dementia.

Quoting from verywellhealth.com “Apraxia is a deficit in voluntary motor skills.” Kate experiences many of the symptoms. Her biggest problem is walking. She recognizes that and is careful when she walks but occasionally stumbles over things. She also has trouble sitting down and getting up. She is very slow in getting into chairs or booths when we eat out. There are a variety of other signs. For example, she has difficulty holding on to her pills when I hand them to her. That is mostly because she tends to hold her hand sideways, and the pill falls out. It is also a problem eating, especially something like ice cream. The way she holds her fork or spoon is often tilted so that whatever she is trying to eat falls or drips on her lap or clothes. Something else that I am just recognizing is that she doesn’t do a good job washing her hands.

Quoting again from verywellhealth.com, “Agnosia is the impairment of the ability to receive or correctly understand information from the senses of hearing, smell, taste, touch, and vision.” I would say that agnosia is the least of Kate’s current problems. The few signs I see are in her lack of critical ability in differentiating the things she senses. For example, she has a tendency to think all of the musicians she hears are superb. The same is true for the actors and overall performances of the various theatrical events we attend. Even in her perception of the beauty of nature, she sees almost everything as beautiful. We have some plants that are looking rather “bedraggled.” They still look beautiful to her.

Here are the symptoms of Stage 6 of Alzheimer’s from the website of Alzheimer’s.net.

  • Confusion or unawareness of environment and surroundings
  • Inability to recognize faces except for the closest friends and relatives
  • Inability to remember most details of personal history
  • Loss of bladder and bowel control
  • Major personality changes and potential behavior problems
  • The need for assistance with activities of daily living such as toileting and bathing
  • Wandering

Of the seven symptoms, only two are not applicable to Kate, major personality changes and wandering. Bladder and bowel control are not too serious at this point.

So I continue to believe Kate is in Stage 6. I would like to postpone Stage 7 as long as possible, but that is not under my control.

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The Interaction of Kate’s and My Moods

Yesterday afternoon I read the following tweet posted by Chuck Fiello Jr. (@OrangeChuck).

When mom isn’t feeling well, she can’t tell me she’s sick anymore so I have to watch for clues. Is she eating less but more tired? Is walking more difficult? When mom eats, she won’t say she’s hungry or full…she just stops eating/slows down or starts to fall asleep.

I replied that I felt the same way about Kate. If you regularly read this blog, you will recall that I have said many times that “When Kate is happy, I am happy.” That doesn’t mean influence of mood moves in only one direction. I make a difference in her mood as well. Recently, I have cited occasions in which I have been able to make her happy with music, family photo books, or simply talking with her gently about her family, our marriage, and/or our children and grandchildren.

It is very clear that there is an interaction of our moods. Once again, the writings of Judy Cornish (@theDAWNmethod) have drawn my attention to something I hadn’t fully appreciated before – the power of caregivers to influence the moods of those for whom we care. More specifically, she has talked about the sensitivity of people with dementia to pick up on the moods of their caregivers. Thus, when a caregiver is feeling tense, frustrated or depressed, that mood can cause their loved ones to feel similarly.

Until day before yesterday, I had never written about ways in which my negative mood and actions led to that same reaction from Kate. Before that, I always reported on ways in which I was able to turn her around if she was confused, frustrated or depressed. That is mostly because I think of myself as being rather even-tempered and upbeat. That wasn’t the case two days ago. I was tense and frustrated as I tried to get her up, dressed, and to lunch before I left her with a sitter so that I could get to the Red Cross on time for a platelet donation.

There was an obvious interaction of our moods. I don’t know exactly why, but she was unusually slow in getting ready even with my help. Looking back, I think she may have been more confused than usual though she didn’t express it verbally. That’s how I normally would recognize it. (Her difficulty understanding how to wash her hands should have been a clue.) I was frustrated and became tense because I was on a time schedule and wanted to follow it, something she can’t do. I tried not to show it, but she can read my emotions quite well. I found that we weren’t working together in the positive way we usually do. Both of us were frustrated. That continued through lunch. As usual, I finished my meal long before Kate. The difference was the tension I experienced in my effort to get home and then to the Red Cross. Nothing I said (the words, that is) should have conveyed the way I was feeling; nevertheless, I suspect she sensed my mood because she was not her happy self.

It wasn’t until the sitter came that she seemed to be more normal. This was a time she didn’t balk when I said I was leaving. She was probably happy to spend some time with the sitter. When I got home, she and Mary were having a good time looking at one of her family photo books. I was happy to see that, and the rest of the day went well.

Yesterday was a more typical day. We had no obligations before 3:00 that afternoon when we had hair appointments. She awoke unusually early, about 7:50. She was a bit groggy, but not in a bad mood. I told her I was glad to see her. She said she was happy to see me as well. We were off to a good start. Of course, we started that way the day before, but it didn’t last.

I thought she just wanted to go to the bathroom but soon discovered that she was ready for the day. She took a shower, and I got her clothes ready for her. When she was finished, she wanted to lie down again. That is not unusual, and since we were under no time pressure, I told her that would be fine. I said, “I’ll be in the kitchen. Just call me if you need me.” About forty-five minutes later, I heard her say, “Hey.” I went back to her and found that she was ready to get up and wanted her clothes. For the past couple of months, I have been laying them out at the foot of the bed on the side that is close to the bathroom. I do that so that she might notice them after her shower. I don’t think she has ever seen them. She asked where they were and I said, “I’ve got them right here.” And pulled them closer to her.

I remained with her the whole time she dressed. She wanted to do everything by herself but needed my help with every item of clothing. In contrast to the previous day, I wasn’t tense or frustrated at all. We had plenty of time and no time constraints. She was even glad for me to help with her hair. That is becoming increasingly frequent. I think she likes it. I know she likes it when I blow dry her hair.

After her morning meds, we were off to Panera arriving before 10:00. We were both relaxed when we got there. She took a few minutes to enjoy the flowers in a couple of large containers beside the door. I didn’t push her to move on any sooner than she wanted, as I did the previous day. We were there an hour while she worked jigsaw puzzles on her iPad, and I checked email on my laptop. Then we stopped by the house for about thirty minutes before going to lunch. We had established a leisurely style and a corresponding relaxed mood that lasted the rest of the day.

Very early after Kate’s diagnosis, I learned that she is very uncomfortable when I rush her. On several occasions, she had panic attacks when we were running late to an event that had a specific start time. That is when I first started experimenting with soothing music to calm her. Music has served us well since that time, but it is only more recently that I have focused on my own mood. I am generally even-tempered so I have thought of my mood as being helpful. I am, however, very sensitive about punctuality. I know she is able to sense the tension I feel when we run late. She has said as much on many occasions when I felt she was misreading how I felt. I thought I was disguising it. Now I am being more thoughtful about my own mood and its impact on Kate. My experience of the past two days shows what a difference mood can make. I know there will always be situations that produce tension for one or both of us, but I will be more mindful of its impact and do my best to control it more effectively.