Report 1: Alzheimer’s & Me: Some thoughts about living with dementia

Was I aware of ALZ while I was growing up? If so, it was only as the disease was generally understood in those postwar years. For example, some elderly people were said to have entered their second childhood. “Senile” was a word I learned, without really understanding what it meant. I do know most people seemed to feel it was something pitiful and maybe even shameful, but it was something I never witnessed. Both my parents died long before their time, but several members of my large extended family may well have had some form of dementia in their older years. This was long after I had left home, however, only to return for short visits, and my interactions with those people were minimal. Over the years, in which I have lived in many diverse communities around the world, I don’t think I got to know more than a few (if any) people as symptomatic as I am now. This is not to say that I didn’t know that, if I managed to live long enough, there was some risk that I would become demented. In fact, being tested for sleep apnea when I was in my fifties gave me a foretaste of what that might be like. This involved spending a night in a hospital to have my sleep monitored. Since there was no separate ward for such a procedure, I was given a bed in what must have been a geriatric ward. As you might imagine, it was a far from peaceful night, but I don’t think it had much of an impact on me at the time. Still, the disease slowly became one of the things I came to dread as I thought about growing old, mainly because several things happened over the years which might well have been its early manifestations.

Forgetting in 2007 that someone I liked, but who I had not seen in a while, had in fact died; losing a car in a very small parking lot; taking early retirement because I was finding it more and more difficult to do justice to my job as a professor; and, after retiring, failing to learn more than a few words of the language of a country where I worked off and on for three years—these are some of the signals that led my wife Bobby and me to take seriously the possibility that something might not be quite right with my mind. Finally, in 2015, I decided to see a neurologist.

I was diagnosed with mild cognitive impairment. This was hard to hear but I could not disagree: a simple word test demonstrated very clearly that, while I could take in and retain a short list of words read to me, I was unable to retrieve the full list, even after multiple attempts. Then in 2018 as I was being screened for a drug trial, I had a PET scan of my brain which produced a definitive diagnosis: late onset Alzheimer’s disease without behavioral disturbance.

I have no regrets about that decision to see a neurologist. I have complete confidence in the doctor I did see and am happy to remain his patient. Still, this diagnosis is not one that is easy to be comfortable with and not a day goes by that I don’t think about it. Alzheimer’s casts its shadow over just about everything and although I am certain we are not obsessed with it, Bobby and I talk about it almost every day.

It’s going on ten years now that I have been living with the certain knowledge that my cognitive ability is waning. Being reasonably bright always has been an important part of who I am, so the steady loss of IQ points takes some real getting used to. Furthermore, it's not just shopping lists or vocabulary items that are difficult for me to remember. A failing memory is also the reason that I am not reading books these days, even though for my entire life I have found great pleasure, and learned enormously, from them. It is not that I can’t comprehend what I am reading as I read, but the next time I pick up that book I am forced to continually look back to ﬁnd things I have forgotten. Fortunately, listening to a book, especially one that has a strong narrative ﬂow and is both well written and well read, still gives me great pleasure. For some reason remembering what I listened to the previous day is simply not an issue. Long early morning walks along the country road on which we live, with our dog on his leash, and a book playing in my ears, is for me one of life’s great pleasures. And yes, I have much to be grateful for.

Bobby, who has signiﬁcant health issues of her own, has been incredibly supportive. With her support I have been able to continue to live a very full and happy life. My neurologist is mazing, and I feel very fortunate to be his patient: he is always willing to explain his thinking, is clear and thorough in his answers to our questions, very thoughtful, patient, and understanding. Our family and many friends have helped me stay aﬂoat with their love and unfailing kindness while also supporting Bobby in many ways as she takes up the burdens my illness entails. And, of course, I recognize that I am very lucky in the slowness of my deterioration.

A failing memory, which is increasingly evident, is not my only symptom. Declining executive function is resulting in an increasing tendency to make bad, or at least far from optimal, decisions. I am also able to do less and less without bringing on a bout of fatigue. On the other hand, over the last few years, and without going on a diet, I have shed 30 unwanted pounds. Who knows why? Could it be that this unplanned return to a healthier weight is because my brain has been working overtime trying to cope, thus burning through body fat? In any case, an unintended consequence is that I can now wear some of my favorite (if perhaps a little retro) clothes. And an even more positive outcome of losing that weight is that I no longer have apnea symptoms.

Turning now to some of the accommodations we have made in our lives in response to my diagnosis, I guess the most dramatic is that Bobby now does all the driving. Like all such decisions this is something that we talked out thoroughly between ourselves and with my neurologist. Several years ago, and because of that diagnosis, I had to pass a road test to renew my driver’s license. I was absolutely stunned when the examiner announced that I had failed. Over 60 years of driving, not all of it perfect perhaps, but still. Then followed a few weeks driving with a learner’s permit with Bobby as the adult driver in the passenger seat and me as the nervous teenager. Once I successfully renewed my license, though, nothing happened while I was behind the wheel that led me to think I should stop driving. (In fact, some part of me still feels that I can continue to do so safely.) Nevertheless, I was skeptical enough of my ability to make rational decisions that I opted to accept the fact that the odds were against me. I quit in two stages: ﬁrst restricting my driving to destinations within our immediate neighborhood, namely our local post office and dump and then (just recently), giving it up altogether. The impact of this is considerable because we live a good distance from town and up until then I had done considerably more than half the driving. So now we try to complete as many errands as possible when we go in while avoiding as many single errand trips as we can. I just ride along in the passenger seat and try to keep my driving tips to myself. I still do most of the cooking and a good share of the housekeeping chores and outdoor work. I am more and more reluctant to take on highly complex or physically demanding projects, though. This means that we eat simpler meals and spend more money paying someone else to do things I might well have done myself in the past. I still do most of the grocery shopping but do so now from lists we have made together in advance. I can no longer carry even a very short list in my head. The decline in my executive function has produced several spectacularly bad decisions so I now run any potential decision past Bobby and always defer to her judgment. In other words, my self-confidence is not what it was, and rightly so. But I can say that I have accepted the reality of my condition and have more or less made my peace with it.

As we did with driving, both of us continue to learn how we can accommodate the continuing decline in my cognitive ability by learning new ways to manage daily life. And we talk openly and often about Alzheimer’s and its ins and outs—from Bobby (aka my external hard drive) reminding me to take my medications, to long discussions about how the brain works and especially the tactics and strategies best suited to our situation. Bobby lives with a long-term illness, too, and until recently our lives were organized around that. Until my diagnosis, I always assumed that I would take care of her. Now both of us need to accommodate and be accommodated to, but we live with the knowledge that whatever happens, we will continue to be there for each other.

Here I need to say that one of the reasons I am writing all this now is that I find myself increasingly forced to pause so that I can search my mind for a word I want. And sometimes that search is unsuccessful. I am coming to fear that sooner or later I could totally lose the ability to use words meaningfully.

“Talking only makes it worse.” This sentiment was written on a small slip of paper, which was handed to me long ago by an old man who up until then had never responded to the greetings I offered every morning as I walked past. This struck me as an inscrutable sentiment. I didn’t take it personally, after all that note did not read “talking with you” but I just couldn’t understand what he meant by it. “Worse,” how? Then to my surprise the other day while sorting through some old files I came across that scrap of paper and now I think I might have a clue to what he was getting at. It seems to me that constantly having to pause to search my brain for the specific word I want to say or write might eventually become such a struggle that I just don’t want to do it anymore. Already, and to my chagrin, writing a set of coherent sentences expressing what I think or feel is becoming more and more difficult. In fact, were it not for Bobby’s fine editorial eye, this piece would never have seen the light of day. For now, though, I am still willing to enter into conversation with anyone who is willing to talk. To tell the truth, I fear that I am closing in on actual garrulousness, increasingly unwilling to cut a long story short, but always willing to make that long story even longer. The language retrieval problem, first made clear to me by my neurologist, is now showing up not just in my inability to repeat a small set of words read to me a short time ago, but also in my inability to immediately find words I have known forever when talking, writing, or even just thinking. For example, early the other morning I was thinking about the pros and cons of adding yoga to my life only to burst out laughing when I realized that instead of “yoga” I was using the word “judo.” And spelling? Well, I won’t go into it, but Miss Lyla G. Woods, my grammar school teacher, would spin in her grave if she knew just how bad it has gotten. (Spell check flagged five misspellings in the previous paragraph!)

I do not want to paint too dark a picture here. Even though there are occasional late-night bouts of sadness, regrets, doubt, and questioning of my self-worth, there is much in my life that I find rewarding and meaningful, and for that I am very grateful. I deeply enjoy long telephone calls with good friends and family, not all of which are restricted to medical issues or the details of daily life. In my opinion at least, I am still able to make a reasonably funny joke now and then and continue to enjoy the ones I hear. And every once in a while, a few phrases of one of the several languages I knew but no longer speak come back to me when I am talking with a native speaker, and I can drop them into the conversation. Being able to continue throwing on the potter’s wheel is a particular pleasure. Working with ceramics, a long-term hobby, is something I value because it is, for me at least, very much a right brain pursuit: no words, no paper, just clay, music and muscle memory, and I am finding it increasingly important as a form of self-expression. Common sense though, has led me to give up trying to fix my ancient electric kiln.

I ‘ve been told more than once that I have a tendency to be overly self-critical, but lately I am getting to the point where I occasionally am willing to give myself a pass. Alzheimer’s brings with it an increasing probability that you will do (or say) something wrong such as sending your cell phone through the wash. Well, when I recently did just that I realized that my diagnosis is a kind of “get out of jail free” card. If it had been someone else’s phone, I would never have mentioned that excuse.

And of course, I am doing what I can to push back at this disease. This includes daily doses of memantine and donepezil which I have taken for some time now. Late last year I began receiving bi-weekly infusions of Leqembi (lecanemab) (a drug that has been shown to slow the progression of Alzheimer’s damage). Unfortunately, this spring an episode of atrial fibrillation raised the risk of stroke to an unacceptable level, and I was unable to continue with the infusions. Now, however, following a bit of surgery to place a device (called Watchman!) in my heart, I am looking forward to getting back on Leqembi in a few months. I try to stick to a Mediterranean diet, to walk 3 or 4 miles a day, and spend some time each day on challenging (for me at any rate) puzzles, in hopes that I can slow down my mental decline.

We plan to remain in our home as long as we can and hope never to have to leave it. This is a goal made practical by our great good fortune in being able to offer a rent-free home on our property to a young couple who are very good friends of ours. In fact, the four of us are one family in almost every meaningful sense of that word. They are a great help to us now and we’re sure they will continue to be so in the future.

The arrival of Leqembi and similar drugs raises the hope that Alzheimer’s is perhaps beginning to yield to the huge effort going into developing treatments and therapies. The Alzheimer’s Association is a key partner in this crusade. Bobby and I were inspired by last September’s Walk to End Alzheimer’s which took place in Hilo’s beautiful Liliuokalani Gardens. This was our first experience as part of the Alzheimer’s community and we found it extraordinarily supportive. There were just so many good people, from so many different backgrounds, each with their story as a patient, or family member or friend, or caretaker, and all committed to doing what they can to move the needle on this very difficult disease. We are looking forward to this year’s walk and hope you will join us, in person if possible, in spirit if not.

Peter Black, Honohina, Hawaii, 2024