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.

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.”

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 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 “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, “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’

  • 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.

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.

Taking Stock of Where We Are

As my recent posts suggest, Kate is on a serious decline. Her rational ability to remember names and places is extremely poor although some things jog her memory. Her photo books and my re-telling stories of family, our marriage, and her own personal experiences continue to be helpful. I don’t believe that she ever remembers on her own that she was an English teacher, school librarian, or church librarian. Even when I mention her degrees and her teaching, she is surprised. She was a volunteer church librarian for 19 years. She does recall that if I give her a little information.

I’ve noticed in recent weeks that she does not ask my name or hers as often as she had done previously. It still comes up, but it appears that she has reached something of a comfort level when she doesn’t remember. Yesterday at lunch, I mentioned something about our having celebrated our anniversary. She asked how many years. I told her, and we talked about how good our life together has been. She can’t recall any specifics on her own, but she talked about our having done so many things. I shifted the conversation and told her she was going to get her hair cut at 3:00. I mentioned the name of woman who cuts our hair. Then she asked her last name. I told her. She had difficulty getting it and asked me to repeat it several times. She said, “I just wanted to know in case I need to introduce her to someone.” I said, “I don’t think you have to worry about having to do that.” I paused and added, “But you might want to remember my name.” She looked as though she hadn’t thought about that and said, “What is your name? I really should know that.” I told her my name. Then she asked her own. She didn’t give any sign of being bothered by not knowing or acknowledging that she didn’t know.

I don’t know that she is actually sleeping any more than in the past, but she wants to rest more often. Resting right after we get home from lunch is common now. Frequently she lies down on the sofa while I sit in a chair across from her. It looks like she spends most of her time pulling her fingers through her hair. She does this every night when she gets in bed. She refers to it as “working” and believes she is doing something good for her hair.

While her rational abilities dwindle, her intuitive abilities shine. Almost every time she passes through the family room, she looks at the flowers blooming on the patio and often asks me to come over to look with her. In the past few weeks, it seems like she has gotten as much pleasure from the flowers and trees around town and our neighborhood as she does from music. I am happy to see that. She has also been looking at a garden magazine I got her a couple of months ago. She wasn’t drawn to it then.

She is more emotional about everything. That includes both happy and sad things. She gets teary far more often. I am more careful about telling her of any news that relates to death. She gets very sad. She also responds more negatively to things that bother her. That includes the heat, sudden noises, and music she hears at some of the restaurants we visit.

She still has moments when she wants to do things for herself. I am glad when that happens. Those moments are becoming fewer, however. When getting dressed, she sometimes asserts her independence and then needs to call on me for help. I feel sorry for her when that happens.

I wonder if this desire for independence is related to something else she has done a couple of times recently. At lunch the other day She said she was going to be taking a trip. I asked where. She said, “I haven’t decided yet.” I asked who she was going with. She said, “I’m not sure.”

Coming back from dinner last week, Kate said, “I’m going to pay attention because I’m thinking about coming out this way sometime. I might bring someone with me.” Another night, when I turned on the car’s air conditioner, she said, “I should be paying attention to this.” If I thought she would have any idea of how to start my car, I might be worried.

What seems most amazing to me is that we still enjoy life and each other. Yesterday was a particularly good day. We didn’t do anything special. We just enjoyed being together. I don’t want these experiences to end. If they do, I will try to remember the good times we have had. We are so fortunate.

Feeling Good About My Decision to Move

Tomorrow it will be two weeks since I made a deposit on an apartment in a local continuing care retirement community. That gives me another two weeks before I either have to back out and get my deposit back or move forward with a full down payment. At this point, I still feel good about my decision and doubt seriously that I will change my mind before the down payment is due.

For ten years, I taught a Sunday school class of seniors that were mostly ten or more years older than I. During that time quite a number contemplated such a move and found it a hard one to make. I understand that, but I have felt quite differently about it. When Kate was first diagnosed, I had my personal preferences regarding her care. I wanted to keep her at home, but I also felt I should keep all my options open. I have not changed that position. After all, there was, and still is, no way I could predict what our circumstances might be like in the years ahead.

Kate’s diagnosis changed a lot of my thinking. The first was that I immediately began to reinterpret everything she was doing. I finally understood her behavior was result of her Alzheimer’s. That made me significantly more understanding. It also placed her care at the center of my life. That doesn’t mean that I gave up doing all the things l like, but it did mean that everything I have considered doing since then has taken her care into account. Until the past six to eight months, I’ve been able to do that by focusing on things we can do together and engaging a sitter to give me twelve hours a week for myself. As she has declined, I’ve been increasingly concerned about what would happen to her if something happened to me. I don’t have any existing health issues, but Kate and I are at about the same as our parents when they began to show signs of diminished health.

Thus, my decision to explore a CCRC was heavily motivated by a desire to establish a plan for Kate should I experience a major health problem. I am happy to say that I immediately felt better when I put down a deposit. Even though the new building won’t be ready for almost two years, we will have access to other benefits of the community like the adult day care, assisted living, or memory care. In other words, my decision has opened up another set of options that were not previously in place.

But that isn’t the only reason I feel comfortable. For many years, Kate and I have felt we wanted to make life as easy as possible for our children as we age. I believe taking this step accomplishes just that. We had already taken some steps to make them aware of what they would need to know if one or both of us were to die. They have all of our financial, medical, and legal information as well as the contact information they would need. I feel that moving to a CCRC would be an added measure of security for us and for them.

There are several other things that were also relevant. I had already decided I didn’t want to remain in our house after Kate is gone. I don’t enjoy all the things that are required to care for a house and lawn. I can hear my friends saying, “Wait a minute, don’t you already have a housekeeper and people who take care of the yard?” That is true, but they don’t do everything that needs to be done. Besides, I still have to manage everything. I would rather have someone else do that for me even if it isn’t done exactly as I would like it or on my time table. My dad lived to be 100 and was active until his stroke at 96. I, too, want to be active. Having an apartment rather than a house will allow me to focus on other priorities.

I doubt that I would have made the decision if there had been an available apartment when I sought information. As it is, I have time to get ready. It gives me two years to close the home we have lived in for twenty-two years. The fact that the building is two years away also gives me plenty of time to reconsider my decision. I feel secure, but not locked in.

Reflecting on Ken and Virginia’s Visit

Visits with friends and family have always been important to Kate and me. That’s true for most people; however, they have played a more significant role for us since Kate’s diagnosis. I’ve been especially mindful of that during Ken and Virginia’s visit with us the past few days. I hated to see them go. The fact that Ken was diagnosed with Alzheimer’s almost five and a half years ago has heavily influenced our relationship. It’s not that we talk a lot about dementia itself. We don’t do that at all in Kate’s presence since she no longer remembers that she has the disease. I don’t see any reason to tell her. We do, however, have such conversations before she gets up and when she rests.

What is more important is that they have such a clear understanding of what this journey is like. They may have picked up a few things from reading this blog, but most of that comes from their own personal experiences. That makes a difference in our interaction when we are together. When they are here, I have a feeling the three of us are partners as caregivers for Kate. They understand how to relate to her in a way that is difficult for just anyone else to do. I feel a load is taken from me. I still get her up and see that she is dressed and ready for the day, but when we are together, she interacts with the rest of us. The fact that we share a common set of experiences as part of the same family is also important. That expands the range of topics we can talk about in ways that couldn’t happen with even our closest friends.

Ken himself has taken steps to remain close to his sister. One of the best things he has done is to have given her the “Big Sister Album.” With 140 pages of photos covering their lives from Kate’s birth to January 2018, it has provided countless moments of pleasure for Kate since he gave it to her a year ago. We keep in on a coffee table in our family room. The cover photo of her and Ken when they were about four and two catches her eye almost every day.

Because it contains so many memories of their lives including their extended families, Virginia and I have enjoyed letting them take some time just to themselves to go through it. They looked at it for almost an hour yesterday afternoon. After dinner last night, they went through it again. This time Virginia sat across from them. When they had finished, Kate put it down. Then Ken said something about the cover picture. She didn’t know what he was talking about and showed her. She didn’t remember who the children were. Ken told her. She seemed confused about Ken in the photo and Ken sitting beside her. It didn’t appear that she remembered that they are the same person. As they moved to other photos, she did refer to Ken by name. I was never quite sure what she understood and didn’t.

As Kate continues to decline, there is another aspect to visits like this. Will this be their last visit together? None of us expects this to be the last, but we don’t know. Ken and Virginia are planning to return in the fall. How will Kate be getting along then? She won’t be the same . How will that affect our time together? Like so much of this journey, we just don’t know. All four of us are living in the moment. One step at a time. That has served us well thus far. I trust that it will in the future. In the meantime, I will savor the memories of a very pleasant visit. I wish Kate could do the same, but she enjoyed the moments.

The Fickle Nature of Memory

The other night at Casa Bella I saw a woman who has been a regular the entire time we have been going to their music nights. For the first time she was without her husband. I saw her afterward and asked about him. She told me he is now in memory care. I was surprised. I’ve seen him about once a month for the past four or five years. How could I have missed that?

By now, I should know. It’s not really hard at all. Even at this late stage, Kate can get along quite well in short-term social encounters without anyone’s suspecting. The nature of most social interactions is so superficial that it’s easy to miss a “disability” that has so little or no visible signs.

As Kate’s husband, I have far more opportunity to observe the many signs that others can’t see. That makes me think of something that can be hard for others to understand. That is the surprising way in which she can switch from “knowing” to “not knowing.” One of the best examples is the issue of her “knowing” me. In a couple of months it will be a year since she first asked my name. It would easy to think that she had “forgotten” my name, that it was completey forgotten it. That wasn’t so, and it isn’t so with other memory problems.

All of us have similar experiences. We forget one moment, but we remember in another. We don’t think much about it. I believe that is why people don’t ordinarily think they may have dementia in the early stages. As time passes, the memory problems become more frequent and enduring. That’s when they take on new meaning, especially for the person herself and those close to her.

My experience with Kate has made me realize how little I knew about my mother’s dementia. I was with her a lot, but not nearly enough to understand the full extent of her problems. My father said very little. That meant I was largely ignorant of what was really going on.

Living with Alzheimer’s through Kate has opened my eyes to many things. One of those is how memory comes and goes although the trajectory is always in the direction of less ability to remember. Kate is at a stage when her memory doesn’t usually last more than a few seconds. Even then, her memory is inconsistent. What I mean is that at one moment she can remember a name. In another, she forgets it, and quickly thereafter remembers again.

Last night she put down her iPad. Suspecting that she might have gotten frustrated with it, I asked if she would like to look at one of her family photo albums. She liked the idea, and I brought her the “Big Sister Album.”

As I handed it to her, she noticed the cover photo of her and her brother. She loves that photo and almost always comments on their smiles. This time she didn’t say anything. She took a moment to look at it. Many times she recognizes both children. Other times she doesn’t. She said, “Is that me?” I told her it was. She pointed to her brother and said, “Who’s that?” I told her it was her brother Ken. Then she looked at the photo more carefully and did comment on the smiles. She was hooked.

I was about to take a shower and thought this would occupy her until I got out. I discovered, however, that she had difficulty reading the text and couldn’t recognize her family. She wanted me to help her. It wasn’t a complete failure to recognize her parents, her brother, or grandmother. Sometimes she did. Sometimes she didn’t. That could relate to the photos themselves. Some are sharper than others, and sometimes people can look a little different from different angles or when they are in different contexts.

In this case, I don’t know exactly why. I do know that her vision is affected by her Alzheimer’s. I also suspect that her memory of faces is becoming more limited as well. I also know that the loss of her rational ability prevents her from making connections that would help her guess the people in many of the photos. You and I would understand that the odds are pretty high that they would be of her parents, her grandmother, her brother, or herself. She doesn’t appear to recognize that.

I did get in a quick shower, but we spent about forty minutes going through the album. I recorded about five minutes of that time. Here are a few examples.

Richard:        “That is your Nana, and look who she’s with.”

Kate:              “Me.”

Richard:        (Pointing to Ken) “Who else is there?”

Kate:              “And who’s that?”

Richard:        “That’s Ken.”

Kate:              (Very excited.) “That’s Ken? My brother.”

Richard:        “Yes, your brother.”

Kate:              (Chuckles with excitement like a little child)

Richard:        “Now who do you think these three are?”

Kate:              “I don’t know.”

Richard:        “Those are you.”

Kate:              (pointing) “That’s me?”

Richard:        “Each one of those is you.”

Kate:              “That one too?”

Richard:        “That’s you on a tricycle.”

A Page Later

Kate:              “Oooh. That’s wonderful.”

Richard:        “Who do you think those people are?”

Kate:              “My daddy and me. . . Look each one is happy, especially me.”

We moved further through the book. We saw many more pictures of her father and her mother. Early on, she asked me their names. Each time she would repeat them. Sometimes the very next picture was her father. She would say, “Who’s that?” I would tell her, and she would ask, “What’s his name?” I would tell her, and we would go to the next picture and repeat the same questions. Not always, but sometimes. It makes me wonder what triggers memory and what causes it to disappear as rapidly as it appeared. That’s something I’ll probably never know.

I see these kind of things a good portion of every day. The servers we see in restaurants or the friends we bump into or almost anyone else we encounter on a daily basis would never know. In fact, there is much I don’t know myself. For example, I wonder how long Kate was struggling with my name before she finally asked me. I suspect she might have had some hesitation the first time. Now it is as natural to ask her name or mine as breathing air.

I believe there is something else captured in the conversation above. That is how happy she is. It is obviously saddening to see her stumble over names, but the excitement she experiences as she goes through her album offsets the sadness. I hope she is able to maintain this spirit for a long time. I know that I’m going to do everything I can to help.

Kate’s Feelings about Things that Require “Rational Thought”

I have commented many times about the fact that people with dementia lose their rational thought processes. They gradually lose their memory of names, places, and procedures. On the other hand, they retain their intuitive abilities. They are able to enjoy music, beauty in nature and art, eating favorite foods, and socializing with friends and family. Kate and I have gotten along happily by focusing on her intuitive abilities and have minimized the importance of the rational ones that have diminished so greatly. Over time, I have begun to notice an interesting intersection of rational and intuitive thought and have been struck by this connection. Let me give you a few examples.

At lunch earlier this week, Kate and I talked about a friend of mine. She asked where he lives. I told her Columbia, South Carolina. She was curious about the name and wondered about its origin. I told her it was named after Christopher Columbus. She said, “Who is he?” I explained that he is often thought of as the one who “discovered” America. She was puzzled. That led to my trying to explain his attempting to find the East by sailing west. I mentioned that people used to think the world was flat. As you might expect, she was quickly overwhelmed by information and asked me to stop. Her rational thought processes were unable to absorb what I was telling her.

We had a similar experience another day this week. She said something funny. We both laughed. Then I said, “You can really be funny. I’ll be your straight man. We could put this show on the road.” I got a puzzled look. I could tell she didn’t know what I meant by “straight man.” Then I tried to explain it. I didn’t get very far at all. I told her about comedians who worked in pairs and that one would appear to be more serious and would say things to prompt the other person to respond with something funny. Then I foolishly mentioned Abbot and Costello, George Burns and Gracie Allen, and Dean Martin and Jerry Lewis. Naturally, she didn’t remember any of them. I told her we would look at some YouTube videos to help her understand. That diverted her attention, and we went on to something else. The important point is that she has an intuitive sense that leads her to want to know the answer to a question her rational thought can’t handle.

The jigsaw puzzles she works on her iPad represent the most relevant example in our lives. She loves working her puzzles. She often asks me what she can do after we come home from lunch, dinner, or other outing. I give her the same choices almost every time. No matter what options I give her she almost always chooses the puzzles. Once she starts them, she inevitably runs into a problem. Every problem arises from a failure of her rational ability. One of the most frequent ones is getting stuck in the store to buy more puzzles. There is a small green button with a shopping cart in the upper right-hand corner of the screen. She frequently touches it instead of the button that will take her to select the next puzzle. Similarly, when she is on the screen with the choices for her next puzzle, she often forgets that all she has to do is touch the puzzle she wants to work. She often asks me how to get to the next puzzle. Other times, she chooses the “Store” button instead.

This can be frustrating for her. She wants another puzzle, but she can’t remember how to get it. In other words, her intuitive thought exhibits a feeling of desire for a puzzle, but her rational ability doesn’t function well enough to do it consistently.

Another incident illustrates this intuitive desire to know without the rational ability to remember. Not long ago, she couldn’t remember my name. I said, I said, “That’s not important. You know who I am.” She quickly responded. “It is important. I should know your name.”

Now let me return to my comment about an intersection of rational and intuitive thought or abilities. It has been almost a year since I first read The Dementia Handbook in which the author, Judy Cornish, defines these concepts and explains their relevance for people with dementia and their caregivers. When I first learned about these concepts, I thought of them as completely independent abilities unrelated to each other. I am now discovering that is not so.

My error was failing to recognize an important intersection between the two. Our intuitive thought leads us to get the answers to questions or problems. That’s something every parent and school teacher observes on a daily basis. Very early infants and toddlers use their intuitive abilities to explore the world. Think about a young child who picks up an object, looks at it, puts it in his mouth, and/or bangs it against the floor. In each case, he is learning something about the world around him. The curiosity of children always intrigues me. Everything is new. They have very little in the way of rational abilities and want to learn about everything. Our rational abilities develop over a lifetime, and much of learning involves our intuitive thought that tells us this learning is important or interesting or both.

Kate was an English teacher for three years and a librarian for the balance of her career. Like other educators, learning (and this means a lot of rational thought processes) is something she values highly. She admires and respects people who have achieved high levels of knowledge in any field of study. Even at this late stage of her Alzheimer’s, this feeling about knowledge is strong. She expresses it when she overhears a report on the evening news and wants me to explain it. The sad part is that she is no longer able to learn the way she did before. The surprising thing is that she isn’t frustrated all the time.

Thoughts on Living Normally

A couple of days ago, I read a Facebook post by a friend whose 8-year-old-daughter has Down syndrome. She and her daughter were in Nashville to make a pitch to the legislature not to overlook children with special needs when it comes to the education budget. She talked about the importance of providing special needs children with as many “normal” educational experiences as possible. I am not an expert with respect to those with special needs, but what she suggests makes sense to me. That has been my approach to care for Kate.

Right after her diagnosis, we talked about how we wanted to spend our time. We agreed that we wanted to focus on the kind of things that were important to us before Alzheimer’s. We didn’t think of it this way, but what we wanted was to lead normal lives. We wanted to remain active for as long as we could. That involved travel, attending live performances, dining out, and maintaining contact with friends.

It has been eight years since Kate’s diagnosis, but we continue to be as active as possible. I suspect we spend less time at home than many people our age. We are reasonably active in getting together with other people for meals and outings like our trip to Flatrock Friday night. Just the social engagement we have with our servers at the restaurants we frequent provides a source of social contact and support. I am sure they would never imagine the contribution they make to our lives.

I wish I knew a way to assess the impact our social engagement has had on us. I am sure it has enhanced the quality of our lives and probably helped us maintain a positive outlook on life even at the present stage of her Alzheimer’s. My best guess is that Kate is just past the mid-point of Stage 6 of the seven-stage model. Life is changing, but we are still active and happy.

Over time, we have had to modify our activity. Our last international trip was four years ago in May. We love Chautauqua, NY, in the summer. We’ve spent at least a week there in each of thirteen summers, ten consecutive years until our last one in 2017. The past two years we have rarely gone to any evening events that start later than 6:00. Thus, we no longer attend the Knoxville Symphony. We have been able to continue going to live theater performances because they all have Sunday afternoon matinees. We rarely attend church on Sunday because it is difficult to get Kate ready in time. As I have frequently reported, we no longer make our daily trip to Panera for Kate’s muffin in the morning. We usually go straight to lunch. That has cut down on our social contact. Until ten-to-twelve months ago, we often spent more than six or seven hours a day away from home. That is now four to six at the most.

My background in sociology has made me sensitive to the variety of environmental factors that can affect us. That leads me to believe that my friend whose daughter has Down syndrome is making a good point that the value of living a normal life is good for her daughter and other people with special needs. To the extent possible, Kate and I have tried to live as we did before Alzheimer’s. I believe it has worked.