“A Fate Worse Than Death”?

Washington DC

In a recent column in the NY Times, physician-author Danielle Ofri described an incident in which she and another doctor were examining a patient with Alzheimer’s.  “A fate worse than death,” the other doctor murmured.  Dr Ofri, too, felt uncomfortable.

There was something almost shameful in bearing witness to a fellow human being’s profound indignities.

The patient had been a prestigious artist and intellectual and to see him with only a sliver of his former intellectual capacities was, Dr Ofri wrote, “beyond heartrending.” 

It’s also heartrending, however, to be in the presence of a person dying painfully from cancer or of a person with a severe stroke that leaves her immobilized.  These diseases, too, are accompanied by indignities, for instance, having to be wiped clear after defecating.  These other diseases, however, do not create shame.  Alzheimer’s does.  Why?

Dr Ofri writes,

I was embarrassed for him, for how embarrassed he would likely be, if his former self could see his current self. That his current self lacked the capacity to be aware of his state offered little comfort. 

Yes, we are embarrassed because his former self would have been embarrassed.  That doesn’t get us anywhere, though; it still doesn’t answer the question of why he would feel embarrassed.

I’d like to suggest that we feel shame because we are looking at our future self as if we had our full mental faculties and were still behaving that same way. 

After I became aware of my cognitive decline (and believed for a year that I had Alzheimer’s), I did not feel embarrassed for myself even though I had the capacity to be aware of my mistakes.  I was fully cognizant of my memory deficits and the problems it caused, and I was aware of my intermittent confusion.  I had “lost” the $24,000 through no fault of my own but because my cognition was impaired.  I might have been embarrassed if I hadn’t told everyone I knew about my cognitive decline, but we all knew what was going on, so there was nothing to be embarrassed about.    

True, my decline has been minimal compared to what others suffer.  Nevertheless, I do forget names and faces I should remember; I miss appointments, even those I’ve written on my calendar; I have to ask others to take over more complicated intellectual tasks I can’t manage any more.  I’m rarely embarrassed, however, and certainly not ashamed.  It’s not that I lack the capacity to feel shame; it’s that we all know that there’s a good physical reason I’m incapacitated.

I’m not alone.  I’ve communicated with other Alzheimer’s patient (mostly in somewhat more advanced state than I) who also report that they feel little embarrassment or shame.  Of the hundreds of people who have written me, no one has even mentioned embarrassment or shame on the part of the person with Alzheimer’s (and I look forward to some responses to this post).  Why don’t we experience embarrassment?

I can only speak for myself, of course, but it seems to me quite possible that, with increasing cognitive impairment, I will still be unembarrassed.  Also, as Dr Ofri mentions, as the disease progresses, I will become incapable of feeling embarrassed.  So it’s entirely possible that at no point in the course of this disease will I feel embarrassment. 

Perhaps Alzheimer’s is not a fate worse than death.  What would happen if we began to realize that when we get embarrassed or feel shame in the presence of a person with dementia we are really imagining a future we cannot actually imagine?  Perhaps we could stop scaring one another and allow ourselves to relate more naturally to another person’s cognitive impairment.

Surprise!

Washington DC

A week ago Friday, over seventy people crowded into a friend's house for my wife Marja’s surprise seventieth birthday party.  She actually had no idea it was coming and was flabbergasted when we walked in, especially when she saw her brother who had traveled from his home ninety miles north of Toronto.  Two of my stepsisters and a brother-in-law from Cleveland also showed up.  It was lovely, even for me who seldom enjoys parties.

The number of people was staggering.  We’re not part of large communities: our small church of perhaps fifty people, our families, and a few of Marja’s former students.  But Marja means much to so many people, and a large percentage came.  Ten days later both of us are still basking in the joy of that gathering.  Marja still mentions it at least daily

In the two days before the party, we also surprised Marja with the arrivals of our two children who weren’t already in the area.  Laurel flew in from California and Kai from Seattle.  Our younger daughter Karin had returned earlier in the week from her fifteen-month stay in Delhi, and we were still elated by that.  It was delightful to have our little nuclear family together again for a few days.

The most beautiful aspect of the party for me was the several weeks before as I combed through our photo albums and loose stacks of pictures to find photos of Marja from different phases of her life.  Especially wonderful for me were the pictures from her adolescence and early adulthood.  I’d forgotten how beautiful she was.  A gentle yet powerful spirit emanates from those pictures.  I kept thinking: How could a woman so beautiful have been interested in me?  I don’t remember realizing at that time the depth of her spirit, so the pictures were my own surprise party.  I scanned the pictures into digital images and sent the files to Laurel.  She created a beautiful slide show that looped continuously throughout the party.  Every time I looked, there was a cluster of people gathered around the monitor.

I suppose we become used to the beauty that surrounds us and it ceases to be startling or, too frequently, even apparent to us.  Marja and I have been together almost forty-five years, and so often I forget the beauty between us.  Every once in a while, though, it will suddenly break through.  Each time it comes as a wonderful surprise, although never so powerfully as when I was selecting those pictures for the show.

My ongoing wonder—at both the numbers that showed up and at Marja and my relationship—reminded me again how much my cognitive decline has opened me emotionally.  I doubt that this depth of joy could have broken through to me before.  Oh, I’d been intermittently aware of and grateful for the gifts I’ve been given.  Intellectually I would have known the importance of the party and recognized its joy.  I would not, however, have experienced it so intensely.  The depth of the joy has been a miracle.

Elderly at 69?

Washington DC

 It’s not just my mind that makes me feel old.  It’s my body, too.  For the last several years I’ve had a permanent numbness in my feet caused by a neurological condition known as “peripheral neuropathy.”  It makes it difficult for me to sense anything on the skin of my feet.  It’s as if I were sensing through a thick piece of cloth, as if I were wearing socks.  

Fortunately, it’s not a progressive disease and mine has been stable for a number of years.  The worst part is that the nerves responsible for telling my brain just where my foot bones are in relation to each other (the proprioceptive nerves) are also affected, so I don’t quite know where my feet are, which means I stumble constantly and lose my balance easily.  I don’t know if the worst part is falling into somebody I’m talking to or swinging wildly for a couple of steps as I regain my balance.

So in addition to this declining memory, I feel physically unsteady, too.  I sometimes feel elderly, especially when the person I’m talking to reaches out and steadies me or when I stumble over nothing.  (Marja and I hold hands on our evening walk.  It’s not just cute; it would also protect if I tripped.)  Just to be clear, I know I’m not elderly in either my mind or body.  Marja and I backpack into high mountains, carrying our supplies as we hike for a week.  Despite the city traffic, I still bicycle everywhere I go (my overall balance is fine; I just can’t find my feet).  I do over thirty push-ups most mornings, and so on. And I still teach, lecture and lead groups well.  But in a society that seems to value youth over everything else, it’s a struggle not to feel less-than.

Mostly it’s the same old problem: I’m still hanging on to a picture of myself from twenty years ago when I was an athlete and could calculate most everyday math problems in my head.  As I’ve written in this blog several times before (here, here and other places), however, a sure path to unhappiness is to hang on to the self I used to be. 

I’m sixty-nine, my memory is shot, I’m confused from time to time, and I stumble over cracks in the sidewalk.  And unless I think I’m supposed to be different, I’m fine with it. 

Life-Long Teachers

Washington DC

My wife Marja is an adult educator.  Almost thirty years ago, she and another teacher founded Academy of Hope to provide high-school-equivalency education for those who had not finished high school.  They started with four students in the former guard’s room of a low-income housing building.  They earned the $50 monthly rent with bake sales.  Academy of Hope has now expanded into the largest adult education program in the city.  Several years after the founding, Marja handed over the administration of the school so she could devote her time to her real love, one-to-one teaching and tutoring.  After her retirement several years ago, she has continued to volunteer as a tutor at the school.

Marja still gets called back to deliver lectures “from the founder” to occasional groups.  She’ll be speaking at Georgetown University next month.  Public speaking is not her favorite activity, and she usually has to go through her own personal hell to prepare a lecture.  What she comes up with, however, is a reflection of her own self: straightforward, simple, humble and meaningful.

She’s plans to speak about the “life-long learner,” a concept familiar to anyone in adult education.  We don’t stop learning just because we’ve completed high school or college or graduate school.  Our formal education can continue indefinitely or pause for a while and then resume.  At Academy of Hope, adults from their twenties to eighties continue their formal education.  For some it’s wanting to be able to help their children with homework, for others it’s a matter of qualifying for job advancement, and for still others it’s the simple desire for knowledge.  For all it’s a source of deep pride.

But we may not recognize that we are also “life-long teachers.”  We teach specific skills to our children and other adults, too.  We teach from our experience.  We teach from our presence.  We teach from wisdom gained over years.  Most of us are not aware of the teaching we do.  None of us really knows its long-term impact.

In this blog, of course, I’m teaching in a more formal sense about cognitive impairment in order to bring it out of the closet and into the light.  I also teach in my writings, lectures, and seminars.  But much of my teaching is less formal, although, perhaps, more important.  People have told me that just talking openly about my impairment cuts through some of the stigma attached to the disease.  When I remain active within my community and take on whatever responsibilities I can handle, others learn that Alzheimer’s or any cognitive impairment is a gradual process during much of which the impaired one can still participate in daily life.  Others begin to recognize that one can live with this diagnosis without fear. 

In the same way, each of you who reads this blog, or is cognitively impaired yourself or cares for a person with cognitive impairment, each of you teaches others about Alzheimer’s or other cognitive impairment.  The teachings may be very specific, for instance, passing on some medical knowledge you’ve gained or the availability of a website or an Alzheimer’s organization.   

Or the teachings may be less well defined.  The willingness of you who have an impairment to “out” yourself neutralizes some of the embarrassment and shame that makes people afraid of the disease.  Your participation in the regular activities of daily living gives others a more realistic picture of what it means to live with Alzheimer’s and reduces some of the fear.  Your willingness to talk with another person who is worried about his or her own cognitive impairment can be very important. 

The readiness of those of you who are caregivers to join support groups helps other people who are earlier the journey.  When you dare to ask others for help, you teach about community and diminish the anxiety that others may have about the isolation they fear.  And when you include even your moderately demented loved one in activities she or he enjoys, you teach people to be less afraid.

Those of us who are in the middle of the struggle with this disease may forget that we have learned a lot that we can teach others.  We are a relatively small group of people.  We have wisdom and unique expertise that is profoundly important in our society.  In a culture in which Alzheimer’s is still deeply misunderstood, the education we provide is a vital piece in the effort to dispel longstanding ignorance and shame.

A Spirituality of Weakness & Vulnerability

Washington DC

I recently visited the Michigan State medical school to lecture about the “Spirituality of Weakness and Vulnerability.”  I’ve lectured many times to medical students, but this was a new topic for me and I was quite anxious: It’s not easy to write about human vulnerability; we don’t have good language for it.  Because of the long train/bus trip, I came in a day early to be able to rest.  I also needed to tweak the lecture I’d prepared.

First panic: I discovered that my talk was on the wrong subject … at least different from what I had told the organizer.  This was actually the second time I’d forgotten the subject matter.  The general topic was “Spirituality and Medicine.” I’d been asked last summer when both the organizer and I believed I had Alzheimer’s, so I was going to talk about that.  In January, after I’d discovered I didn’t have Alzheimer’s but only a stable cognitive decline, we decided I would talk about my history of working as a physician in economically oppressed areas and its impact on my spiritual life.

I wrote back with a proposed outline of my talk.  He responded that he didn’t see any reference to spirituality in the text.  Sure enough, I’d completely forgotten the general spirituality theme.  So we settled on the “Spirituality of Doing,” ie the deepening of my spirituality that had come from my work as a physician in Washington DC.  When it came time to write the lecture, however, I forgot what I’d told him and prepared the lecture on vulnerability. 

Second panic: Re-reading the lecture, I realized it was terrible: Simplistic, full of platitudes, and boring with no new, interesting perspective.  It was a ghost of what I thought I’d written.  I hadn’t articulated what I knew in my spirit: integrating my human brokenness into my spirituality was essential to being a good doctor.  So I tried to fix it.   

Third panic: About 6 PM I realized I wasn’t improving the lecture, which comprised four stories describing different sides of weakness and spirituality.  But I couldn’t tie them together … especially the story about my “Alzheimer’s,” which—while still about weakness—had not been painful like the others.

Fourth panic: I choked.  My anticipation of the next day’s embarrassment and disappointment overwhelmed me emotionally.  I could hardly think straight.  I wasn’t going to be able to do this.

I took a long walk and returned to the hotel, hoping to continue writing.  Still nothing!  In desperation I called Marja.  She’d read the draft before I had left DC and said, without much enthusiasm, that it was ok.  I wasn’t terribly hopeful she was going to be able to help now. 

Story, story, story! she reminded me.  It’s the stories that people remember, not all the philosophy/psychology explaining it.  From my previous writing, I knew this to be true, but in this case I just didn’t trust my naked stories.  Marja recommended letting the stories speak for themselves, hosever, without trying to talk about them too much.

I felt a glimmer of hope and went back to writing.  It took me until 4 AM to get it done.  I got up at eight to make sure my middle-of-the-night thinking was still coherent, made some small changes and was picked up a little later.  The organizer wasn’t really upset about the subject change … what could he do, after all?

I was still more anxious than I'd ever been before giving a lecture, but the approximately 100 students and faculty paid close attention …even though it was after lunch.  I can always tell when my audience is with me.  They asked lots of good questions, and the organizer and his group were very appreciative.  It was a wonderful experience for me.  (You can read the lecture here.)

Sharing stories of my brokenness gave people in the audience permission to look at that broken part of themselves, to recognize their dark sides, to acknowledge that they aren’t always the strong, confident people they show the world.  Recognizing our weak and vulnerable sides can bring us closer to our true selves and to our core values. 

Only later did I understand that the whole process—forgetting the agreed-upon lecture subjects, not recognizing the unsatisfying lecture until almost too late, all the panics, and, in the end, acknowledging my dependence on Marja—was itself an experience of my weakness and vulnerability. 

There’s a brief sentence in the New Testament: “Be ye perfect as your Father is perfect.”  The word translated into English as “perfect,” however, doesn’t mean doing everything right; it means being whole, living out of one’s complete self, expressing one’s deepest values.  And in each one of us being whole includes being aware of and acknowledging our weakness and vulnerability.

Bus Schedules

Washington DC

Between a viral infection that has knocked me about the last several weeks and preparing for a lecture at the Michigan State University medical school, I haven’t been able to blog.  Fortunately, I did feel better enough for a few days last week to take the train/bus combo to Michigan and fulfill my responsibility to give the lecture, but even on the way back I started to feel weak and sleepy again.  It’s gotten a little better, but it’s time to see a doctor other than the one looking out at me from the mirror.

I’ve wondered two or three times whether the fogginess and weakness that has accompanied the other flu symptoms is a result of some further damage to my brain.  I doubt it, but I can’t help thinking about it.  The most likely cause of my cognitive decline is vascular (those little strokes), so—although it’s unlikely—any sudden change in my mental status could signal a sudden worsening of my cognitive decline.

Even without the current fogginess, the impairment seems to be worsening slightly over the past several months.  Last week I was trying to make a set of bus reservations.  Megabus can certainly make travel inexpensive, but you can only make reservations online.  They also make you figure out your own connections if you have to change buses.  I was trying to make reservations to travel from here in Washington to New York City then transfer to a bus to Albany NY and make the return trip a week later.  I had to:

a) figure out my desired arrival time in Albany,

b) figure out the needed departure time from New York to Albany, and

c) then go back and figure out the Washington departure time to get to New York on time for the Albany bus.  

d) Then I needed to reverse the process a week later.

It sounds a little complicated when I write it out like that, but this kind of task has never been difficult for me.

I just couldn’t do it.  I would get the day of the week confused, the arrival and departure time in NYC confused, forget when I wanted to leave or when I wanted to get there.  Several times I had all four reservations about to finalize but then I double-checked and one of them had the wrong time or even the wrong date.  Then even those that were right started to look like they were wrong, and I had to go through the entire process in my head to double-check it.  I should have written it all out on paper, I suppose, but I got so frustrated that it didn’t even occur to me.  After forty-five minutes, I finally got the trip from Washington to New York right and the trip from Albany back to NYC right, but I couldn’t get the other two.  I finally had to ask Marja for help.

Before my cognitive impairment, it would have been humiliating to tell Marja I couldn’t do it, but at least that is no longer true.  We both know what the trouble is, so she was happy to finish the task.

Having to hold several related things in my mind while working on each separately is the most frequent manifestation of my cognitive decline these days.  Something similar happened trying to compare two almost identical copies of my speech; there’s a not-very-complicated automatic procedure for that exact thing in Microsoft Word, but it took me the longest time to get the correct documents in the right order and then—as I went through the combined document—I kept getting confused about which option from which document was the one I needed.

It frustrates me:

• I can’t tell whether my confusion is really getting worse or it just seems so. 
• Almost every time I try to describe something like the ticket episode above, the other person will say, “Well, I’d get confused, too.”  I just nod my head.
• And then I remember my intention to let these kind of useless comparisons go.  I’m not scared of the future, so why let myself get worked up about minor changes?

In September 2012, when I first received the diagnosis of “almost certain” Alzheimer’s, I would have been extraordinarily grateful to know that in April 2014 I’d be worried about such minor problems as these. 

I could just remain grateful and take each day as it’s given.

Depression and Alzheimer’s

Washington DC

A reader left a comment on a recent post pointing out that depression is also a relatively common cause of cognitive impairment.  Because of childhood trauma, he’d also experienced anxiety and PTSD, and I suspect they belong on the list of potential causes, too.  People sometimes ask me if depression makes a person more susceptible to Alzheimer’s.

The question is important.  There is certainly an association between the two, but the cause runs the other way: Alzheimer’s (or any other cognitive impairment) can cause people to be depressed, but there is no evidence that depression causes Alzheimer’s or even makes it more likely. 

So depression must be on the list of the causes of mild cognitive impairment.  If medical evaluation has ruled out the most obvious of the others, then depression moves higher in the list of possibilities.  If a person is seriously depressed, one can see how the depression might affect her ability to think well.  

Usually depression is obvious, but not always.  There is (or, at least, was) a stigma around the disease and people don’t want to acknowledge their inner pain.  They need to cover it up and mask it with a smile.  Even family members may not know how much the person suffers. 

In some cases the people themselves don’t even know they’re depressed.  I’m an example.  I now know that I was depressed for the first half of my adult life, but at the time I didn’t recognize it for what it was.  I didn’t have the usual symptoms: sleeping too much, being dysfunctional at work, thinking of suicide, and so on.  But I was almost always dissatisfied with my life, feeling I should be doing better, hyper-aware of my mistakes despite having what might have appeared to be a perfect life as a successful small-town doctor.  I was mostly miserable.  I thought my misery was caused by the difficulties of medical practice or my unreasonable expectations of life.  The possibility of depression never entered my mind.  It was more than a decade later, after I’d begun adequate anti-depressant medication and was beginning to experience how a non-depressed life felt, that I recognized I had depression. 

So, when faced with a person who has dementia of no discernible cause, a doctor must keep the possibility of depression in mind, even if the patient vigorously denies being depressed.  Having her doctor repeatedly return to the question of depression, however, can be frustrating for a patient who is convinced that she is not unusually depressed.  It can raise doubts about her own perceptions of her emotional state, especially if she does have minor bouts of mild depression.  It may also seem as if the doctor is trying to dismiss the seriousness of her complaints by pushing them off onto emotional causes. It’s a frustrating experience for both patient and doctor that can endanger mutual trust.

Mild cognitive impairment of no obvious cause is difficult enough an experience.  The confusion around depression can make it worse.

My Grandchildren Get It

Napa, CA

 My confusion when trying to perform multi-step tasks continues.  It seems a bit worse than it used to be and certainly more frequent. 

My granddaughter Madeline was mildly ill Friday, so we canceled our plans for an excursion into San Francisco and she, her brother, and I spent much of the day inside playing board games, one of which was Yahtzee, which was new to me.  If you know poker, however, the rules are not complicated.  One of them involved the conditions under which you could roll the die additional times during your turn, and the kids tried to explain it to me.  After a while, it became clear that I wasn’t getting it.  Madeline, nine years old, looked at me brightly and said, “That’s okay, grandpa, we can explain them to you as we go along.”

Madeline had noticed my inability and frustration but showed no hint of surprise, condescension 0r impatience.  She just decided to comfort me: “That’s okay, grandpa.”  We proceeded with the game and, indeed, we had no problems. 

A similar difficulty occurred in a cooperative game Laurel, her husband, the kids and I were playing yesterday.  Each player gets four “actions” in each turn, but the other players can help figure out which actions should be taken.  Needless to say, everyone contributes their ideas one on top of each other, but a consensus usually arises quickly.  I’d played the game with them before and knew the rules.  Nevertheless, I just couldn’t follow the discussions.  Once we got beyond the first or second action, I couldn’t keep them all in my head simultaneously, nor could I figure out how one suggestion was better than another in helping us win the game.  It was like trying to follow scientists discussing a new and complicated theory; I was in over my head.  But this was a conversation the children easily understood about a family game.  I could only sit and watch, a new experience for me.

Trying to make simple calculations in my head has gotten difficult, too.  How many tablespoons are in a cup?  There are three steps:

1. I know that there are 15 milliliters [ml] in a tablespoon and 240 ml in a cup.
2. I don’t know without a pencil and paper how many times 15 goes into 240, but I do know that 30 (twice 15) goes into 240 8 times.
3. Multiply 8 by 2 to get back to tablespoons and you get 16 of them.

It seemed simple to me. On paper it took me perhaps fifteen seconds.  But I just couldn’t keep all three steps in my head at the same time.

The impairment is annoying, but, fortunately, I don’t feel embarrassed or get angry with myself.  Although I don’t have Alzheimer’s, I know that the chances of my cognitive decline worsening are high (see here).  If I don’t dwell on how much I’ve lost compared to my past and if I don’t dwell on what’s coming in the future, things are just fine. 

Most religions seem to recognize the same truth, for instance,

Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.  Matthew 6:34

I’ve always known this intellectually, but my intellectual impairment seems to have inscribed it in my heart, too. 

It’s a wonderful gift.

How Did I Do That?

Napa CA

I’m visiting my daughter Laurel and her family in Napa CA.  I’ve been doing this regularly for the past several years during the grandchildren’s spring vacation so that they’re able to stay at home without Laurel having to make special arrangements.  At 9 and 11 years old, Madeline and Otto are getting to the place where they need less babysitting than they do a simple adult presence.  As I write, they’re quietly entertaining themselves as they usually do in the morning.  In the afternoon, we’ll ride our bikes downtown to visit the library.  Other days we’ll go for a hike, go bowling, visit a museum in San Francisco, or stay home and play board games.  I have never enjoyed younger children, but I certainly seem to be enjoying my grandchildren as they grow older.

Laurel said last night that she hadn’t noticed that my cognitive impairment causing any problems, and, as she said, “You know I’d tell you if I did.” 

But I’ve noticed it.

Otto has a soccer game this Saturday, and I told him I’d be sorry to miss it since I’m starting my three-day return train trip on Friday.  Laurel interrupted and said she thought I was leaving on Sunday.  Knowing better than to trust my memory, I checked my calendar and, sure enough, she was right.  I had reserved my train tickets to leave Sunday morning and arrive in Washington next Wednesday.  But, somehow, for the last several weeks, I’ve had it in my mind (and have been telling Marja and my friends) that I’ll get home on Monday.

Because weekends are special family times at Laurel’s, however, I always try to stay in Napa through most of the second weekend while I’m here.  So I would never have planned to leave on Friday without exceptionally extenuating circumstances; I was bothered by having to leave on Saturday but I never thought it through enough to notice my mistake.  It just didn’t occur to me.  Furthermore, I have no idea why I hadn’t noticed my error since the correct schedule is plainly written in my calendar on both my phone and computer and I check them at least daily.

To make matters worse, I had scheduled a lecture to a well-established community group for next Wednesday morning.  But the train isn’t scheduled to arrive in Washington until Wednesday afternoon.  That meeting, too, was on my calendar and must have been there when I made my train reservations.  I have no idea why I didn’t see the conflict.

And to make matters even worse, last Friday when I became of aware of all of this, I wrote an email to the sponsor of the event canceling my presentation without really thinking through whether I had any other options.  I have previously committed myself to a smaller environmental foot print when I travel so I haven’t flown in years, but I can certainly bend my principles and fly home in time for to offer the lecture.  Fortunately, my email to the sponsor didn’t get through and I was able to make new travel arrangements without panicking her.

These are the sorts of little personal indignities that come with my cognitive impairment.  Friends tell me that they have memory lapses like this all the time; it’s normal for them.  But it wasn’t normal for me before this impairment.  On the other hand, the major impact of my lapses is that usually, they only embarrass me.  It’s not a big deal.  I can live with it.

Better?

Washington DC

Ever since I announced that I don’t have Alzheimer’s but some other form of cognitive decline, I’ve had friends and acquaintances say something like: “I heard the good news!  I’m so happy that you’re better.”  In one way, they’re right, of course.  Having a stable cognitive decline of uncertain cause is better than having inevitably progressive Alzheimer’s disease.  If “better” means “back to normal,” however, then I’m not better.  I have by no means regained my cognitive losses. 

I notice my impairment in three areas: difficulty in finding the right word, forgetfulness, and occasional confusion.  The word-finding problem probably annoys me the most.  I was an intellectual.  I still do some teaching.  For me, communicating has always meant finding the precise word to express myself.  If I want to tell you I’m feeling “frustrated,” synonyms won’t do it.  I don’t mean I’m “irritated,” or “upset” or “disturbed.”  I mean I’m frustrated.

Forgetfulness: I can’t count on my memory anymore.

•  Have we met before?  It’s my first question on meeting a new person in church.  I just can’t remember.  So I ask.
• What did we decide at the last meeting?  I have no idea.  If I hadn’t written it down or reviewed it before today’s meeting, it’s disappeared.
• What did I agree to do before Sunday?  I don’t remember agreeing to do anything.  Everything has to be written down and reviewed.
• Without my calendar I have no idea what my week looks like.

It’s the intermittent confusion, however, that’s the most bothersome.

• I was downtown earlier this week and got off the bus to walk the four blocks to my doctors office.  I wasn’t lost; I knew exactly where I was.  I knew where the office was.  DC is laid out in a grid, so there’s no confusion about how the streets go.  I ordinarily have a good sense of direction.  This time, however, I got completely turned around and got to the office only by guessing.
• Several days ago I was helping a friend.  She was working 21 hours a week and getting paid $900 a month.  What was her hourly wage?  This is not college calculus.  She’s working three hours a day for thirty days in the month, which is $10 an hour.  But I got into multiplying 21 hours by four weeks (84 hours per four weeks) and then trying to estimate the fraction of the fifth week in every month; soon I had to get my pencil out and even then I got confused.

None of these is a big deal.  My impairment isn’t getting worse.  I’m enjoying myself as much as I ever have.

But I don’t want people to think that I’m cured.  I can’t quite explain that, but it has something to do with wanting an honest relationship between us.  Whatever.  In a longer conversation with anyone who’s actually interested, of course, it’s not difficult to describe the situation more fully.  What bothers me is how to respond to someone in the elevator (see here and here) or when meeting each other at the checkout counter.  I think the answer is to suck it up.

It occurs to me that my situation is not that different from many older people with arthritis in their knees, bladder problems, generalized weakness, or widespread aches and pains.  Most of the time, when I ask those older folks how they are, I don’t really want to know!  I’m not interested in hearing their “organ recital.”  I want to express my happiness with their recent successful surgery or hospital discharge or express my concern for them.  What I want from them is a smile and “Oh, I’m doing as well as can be expected.” Or “It’s going okay.”  “Or, yes, I’m happy the surgery went as well as it did.”  If they’re smart, those aching older people will make very sure I want to know before they tell me the truth.

It’s no different for me.  Usually people want to hear I’m okay, that my life is going well, that I’m relieved about not having Alzheimer’s.  They would prefer, at least for the time being, not to enter into my pain.  I can deal with it.  Mostly.