If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiographyand all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.
It’s starting to sink in that these episodes are,
indeed, getting more frequent.I’m
beginning to get some sense now of what it might be like to be confused much of
the time and, even more difficult, not be able to snap out of it on my
I have a baseline level of mild impairment that I’m
used to: I lose things constantly.I
frequently can’t find the right word.I
not only forget to keep appointments but, when reminded, forget I ever made
them.That baseline level of impairment
is slowly increasing certainly but very slowly and only over a period of
The episodes of confusion are completely different:
One minute I’m at baseline, the next minute I’m bewildered by what’s happening
around me; and five minutes later I’ll be just fine again, even curious about
what just happened to me.The episodes always
seem sudden; they come out of the blue with no precipitating events. I’ve never noticed myself sliding gradually into
one.By the time I notice, the confusion
is full-blown.Returning from the deeper
confusion to baseline, however, seems to take a bit longer, perhaps a few minutes.
I’m getting used to these spells and they haven’t bothered
me much so far.But as they get worse, I
wonder if it won’t be much more difficult for my family, friends or caregivers
who will have to relate to me and respond to me without being sure of my level
of confusion. This variability in symptoms
is a hallmark of Alzheimer’s.So if you were
to experience me during one of my episodes, you’d have a tendency to relate to
me the next time as if I’m always so confused. On the other hand, if you experience me only
at my good, baseline times, can you be prepared for my cognitive level suddenly
dropping through the floor?Can you trust
me to handle money or the finances or to take the vacuum cleaner apart to fix
it?The underlying question will be: Do
you treat me and trust me as if I were at my day-to-day level and, if so, how do
you factor in the fact that I may become suddenly more confused?Life together may be a real roller coaster.
In this context, think of the decision about when to
stop driving; it may be the most difficult one in the entire illness,
especially for men.Right now, I’m a
competent driver; people are comfortable riding with me and no one would think
to suggest giving up my driver’s license.But what if I’m in the middle of traffic going 70 mph on the Interstate
when I have an episode of confusion and I don’t know quite how to handle
it?Should I be evaluating my driving
ability on the basis of my baseline impairment or on the basis of how I am at
my most confused?All logic tells me to
that I should evaluate myself for driving as if I were at my worst.
That’s a scary thought!!But maybe I need to face it without flinching.
A few days ago, I was doing our laundry in the
basement of our small apartment building.After washing one load, I put it in the dryer, filled the washer with a
second load, and went back to our apartment.I came down an hour later, expecting to find both washer and dryer
cycles finished.Instead, I found them
still going.The LED on the washer
indicated that there were still forty-seven minutes remaining in its
cycle.I interrupted the dryer cycle and
found that the clothes were still very damp.What was going on?
My first thought was that I’d forgotten to turn both
the dryer and the washer on after loading.I
had previously done so occasionally on one machine or the other but never both
at the same time.Since both machines
were now running, of course, there was no logic to my thinking, but it took a
while for that to sink in.
It took me a bit to realize I should open the washer
to see what was in there.I was
surprised and a little confused to find clothes belonging to someone else.How did they get there?Then I noticed a basketful of our dry laundry
on top of the washer.Where did that
come from?Had I forgotten even to put
the clothes into the washer?Had I
forgotten to turn the washer on, which encouraged another person to empty our
dirty laundry from the machine and start washing his?The best way to figure that out, I thought,
was to check the dry clothes in the basket to see if they were clean or
dirty.It wasn’t obvious to me.These were the dark clothes and I couldn’t
remember whether I’d put the light clothes or the dark clothes into the washer
first, so that didn’t help me figure out whether they were clean or dirty.I then reasoned that the clothes in the
basket should be warm if they’d just come out of the dryer, but they were only
slightly warm in the middle of the basket, so what did that mean?
I see now that, as I tried to make sense of the
situation, I somehow couldn’t keep these few bits of information simultaneously
in my mind.
I’d waited an hour, but both machines are on.
The washing machine indicates forth-seven minutes left in
The clothes in the dryer are still damp.
A basketful of our dry clothes sits on top of the washer.
I stood there going back and forth in my mind,
checking the dry clothes, trying to figure it out.Slowly, bit-by-bit, I realized: Someone else
had come down, taken my dry clothes from the dryer and put them into my empty
laundry basket, then put my wet clothes from the washer into the dryer and
finally started washing his clothes.Even after I thought of that possibility, however, I wasn’t sure; it
seemed a little complicated.I left the
dryer going to finish its cycle and took the dry clothes to our apartment, but
the uncertainty cleared only slowly.
I had been confused, of course.In previous episodes of confusion, however,
I’d realized I was confused during
the confusion.This time I became aware
only gradually after it was clearing.
In reflecting on this, I notice how episodic my
confusion is. I’m lucid the overwhelming
majority of the time: Over the weekend, I gave a short talk without notes and
led a discussion for an hour and a half without trouble; I can usually figure out
computer complication or keep our finances in order.At our church yearly budget meeting on
Sunday, I was helpful in clarifying some complications.I haven't had much trouble writing this post
and explaining (in a hopefully unconfused way) the state of my confusion.As a general rule, I’m not confused at all,
and then suddenly something like this happens.
As usual, my laundry-room episode didn’t bother me
emotionally.Things like this are still
more fascinating than troubling.In
addition, episodes of obvious impairment resolve those fragments of uncertainty
that still bother me after all the tests
that were normal.
On the train home from Seattle, I read Flowers for Algernon by Daniel Keyes.The novel is written as a series of journal
entries written by Charlie, a mentally challenged man who has been selected to
participate in a clinical trial of a surgical procedure designed to double or
triple his IQ.Impatient scientists
choose him as the first human subject after only one experimental mouse,
Algernon, exhibits signs of increased intelligence.Indeed, the surgery is successful, and we experience
Charlie’s increasing intellectual brilliance: he develops a photographic
memory, learns ten languages, quickly becomes an expert in several different
unrelated fields, and so on.However, we
also watch, as Charlie becomes more isolated, not only because nobody can
follow him intellectually but also because—in his emotional naïveté—he doesn’t
recognize how he alienates others with his aloofness and lack of empathy.
But then Charlie notices that Algernon has begun to
regress and is soon having trouble with the simplest mazes.Charlie, of course, recognizes his likely
future: he will lose his newly acquired IQ and may even lose more than he had
originally gained.He returns to the experimental
lab and works feverishly, not to change the course of his own disease but to
discover the metabolic pathways that doomed the surgical experiment from the
Meanwhile he chronicles his own decline.Knowing what’s coming, he has to watch
It’s a good read, but I found two lessons particularly
descent doesn’t seem to bother him as much as one might expect.He has succeeded in finding the medical
reason behind his decline and feels satisfied with his life.Second, as he loses his intellectual brilliance,
he opens up emotionally, and old, withered friendships become rich again,
perhaps richer than before.
In this brief summary, the novel sounds Pollyannaish.It isn’t.It is, however, hopeful.Regardless of what too many of us in the culture believe, intellectual
intelligence is not the be-all-and-end-all of life.There are, of course, intellectual geniuses
who are also empathic and compassionate, so the issue is not intelligence per se.But there is something in his
declining intelligence that allows a richer emotional life.
This rings true
for me.I can’t really explain it, but
at least I am finding that the increasing emotional openness and deeper
friendships more that match what I’m losing cognitively.
As I’ve written before, there are caveats.First, I’m only mildly cognitively impaired
and I may be watching through rose-colored lenses.In a sense, I have the best of both worlds:
increasing emotional intelligence and still persistent intellectual
intelligence.Secondly, Flowers for Algernon, like Still Alice,
is a novel, a story, by a cognitively intact author who can only imagine the
inner life of a mentally challenged person.Third, the story describes little about the suffering of others close to
him and nothing about the suffering of caregivers.
Nevertheless, while it may or may not be an accurate
depiction of intellectual decline, I found it deeply meaningful.I will eventually become profoundly impaired myself
and will certainly die, but the journey does not, apparently, have to be the
I’ve just returned from Seattle where I was visiting
my son.On the train trip back, I became
repeatedly confused trying to locate my seat.Here’s the process in some detail.Although I had a seat in one of the coach cars, I usually spend most of
my time in the lounge car writing or reading at one of the tables.I have to return to the second coach back to
my seat occasionally, however, for one reason or another.Several times, however, I got confused about
which way to turn to get from the lounge car back to my seat.(Just to be clear: on a train there are only
two directions to choose from.)One end
of the lounge car has tables and the other swivel chairs, but during these
episodes I couldn’t remember which end of the car I’d entered.I would take a few seconds and then head in
the direction I guessed my seat was located.I’d walk a few steps, however, and then realize I wasn’t sure.So I’d have to concentrate on the logical
connections between each step in the entire thinking process.It went something like this:
I would remember watching (at the beginning of the trip) the lounge car being physically
hooked up at the very end of the train; therefore,
the lounge car must behind my coach car; therefore,
if I want to go from my coach seat to the lounge car, I
have to walk toward the rear of the train; therefore
if I want to go back to my regular seat from the lounge
car, I have to walk toward the front of the train; therefore,
I have to look out the window to recognize which
direction the train is going.In my
confusion, even if I looked at the scenery as it passed by I had to consciously
decide which way the train was going.Therefore,
I should walk in that forward direction; and
while I walked through the coaches I should double check
that I was going in the same direction that the seats were facing.
I actually had to go through each step consciously and
deliberately, step by step.I was
especially startled when the direction the train was going wasn’t intuitively
obvious as I looked out the window; I’d have to decide which way the scenery
was going and remember that the train would be heading in the opposite
direction.But the bigger problem was
that I couldn’t simultaneously keep in my mind the several needed bits of
information.I would remember, for
instance, that the lounge car was at the end of the train, but as I was trying
to decide which direction the train was going, I’d forget where the lounge car
was in relationship to the train.Or I’d
figure out where the lounge car was relationship to the rest of the train, but
get confused about the relationship between my car and the lounge car.It was very weird.And, then, on the way to my seat after having
actually reasoned it all out, I’d get confused, stop, and have to go through
the entire process again.One time I
walked almost completely through one car, reversed direction, walked back
almost to the lounge car, and then reversed direction again before I had it
And then other times, even when I got the direction
right, I’d just forget where my seat was within the car.So I’d have to walk through the car looking
for my suitcase in the overhead rack.A
couple of times I went right past my seat it without recognizing it.
I felt confused, of course, but I was surprised that I
wasn’t more frustrated.Part of it was
that on the train, there’s no hurry with anything, so the confusion doesn’t
cause a problem.But the other part (and
I find this difficult to believe myself) was that I found the episodes
fascinating: How, for instance, was it possible to look out the window yet have
to consciously reason out which way the train was going?I did get embarrassed wondering what people
thought of me wandering up one direction, stopping and walking back, and then changing
again, but in reality, of course, no one was paying attention or would have cared.
And then just as quickly as it came on, it would be
over until the next time.Mostly I’m fine
and then something like this will happen.It is so intermittent.
I’m finding it difficult to come up with material for
this blog. I think it’s a form of writer’s block.
I suspect it has to do with my fixation on the
scientifically determined medical diagnosis.For those of you who haven’t been following this blog, all my objective
tests for causes, or even for cognitive impairment itself, have been normal,
yet I’m still convinced it’s Alzheimer’s:
·I know I’m impaired;
·80% of all people with cognitive impairment have
·the pattern of my symptoms is typical of
·my medical tests have shown no evidence for any other
cause of cognitive impairment;
So I’m comfortable referring to my cognitive
impairment as Alzheimer’s as long as I can take a few minutes to explain the scientific
uncertainty of the diagnosis.But what
do I do in a two-minute explanation?How
do I refer to myself in a posting here for someone who might be visiting for
the first time?
My discomfort, I think, comes from the fact that when
I was practicing as a physician, my patients expected me to confirm their diagnosis
scientifically.I was certainly aware
that medical testing could be in error, so—if the science couldn’t explain
their symptoms—I didn’t discount their experience, but my job, nevertheless,
was to report the scientific facts.If
the science and the patient’s symptoms didn’t agree, my job was to describe the
discrepancy (usually at length) and give an opinion,
not to make an absolute judgment.So, in
those cases, I always felt the longer explanation was always necessary.
Furthermore, honesty is almost an absolute value for
me, and saying, “I have Alzheimer’s” when the objective testing suggests
otherwise feels misleading.Yet, if I
describe my illness in the elevator version as a “subjective cognitive
impairment,” almost no one’s going to understand what I’m talking about, so such
a description is misleading, too.So, in
fact, describing myself as having Alzheimer’s is less misleading.Nevertheless,
I’m emotionally uncomfortable without the qualification.
I believe I need to get over my qualms. I will change the introduction to the blog and
to my website to reflect the uncertainty, but, despite my discomfort, I’ll include
the word “Alzheimer’s” in my two-minute, elevator version.
I hope that getting over my irrational scruples will
help break this writer’s block.
I remain grateful for the support so many of you have
There are several
different groups (formally referred to as “domains) of symptoms of
cognitive impairment such as loss of memory (amnestic cognitive impairment); impairment
of visual-perceptual skills; difficulties in concentration; general slowing of mental
capacities (for example; taking long to do things, trouble following recipes or
keeping track of bills); language problems (for instance, word finding), and challenges
in executive function (for example, in planning or in solving problems).
I’m visiting my son Kai in Seattle.He’s a carpenter and currently building a
basement apartment in his house.While
I’ve been here, we’ve been installing kitchen cabinets together.
IKEA cabinets are, apparently, of good quality and
relatively inexpensive … but you have to assemble and install them
yourself.IKEA sells internationally and
has chosen to obviate the need for translation by creating assembly
instructions comprising only pictures and diagrams, no words at all.The instructions are very clever, walking you
through complicated procedures one small step at a time.They are thorough and accurate, but they are
Since Kai’s the carpenter and it’s his kitchen, I’ve
been the assistant, deferring to him in interpreting the diagrams.Yesterday, however, Kai asked me to attach a cabinet
door.The assembly was a little
different from the others we’d done, but not particularly complicated.On my own, however, I was completely
flummoxed.The two of us had previously
put one small part of the drawer together, but I couldn’t even find the place
in the instructions where we’d stopped.I looked for ten or fifteen minutes and just couldn’t figure out where
to begin.I told Kai, he took over, and
we got the job done.
Afterwards, we watched football together, went for a
long walk and picked up a pizza.On the
way home, I asked him whether he had noticed any impairment in my cognitive
capacities, anything other than my reports of what I was experiencing.He pointed to the difficulties with the IKEA
diagrams.He told me that that’s the
kind of thing you used to do better than I could.
He’s right.That kind of capacity to translate diagrams and interpret the proper sequence
of steps to complete that task had always been a strength.I’d enjoyed similar tasks and would have
looked forward to it as a challenge, knowing that if I took my time, I’d get it
done.But that’s changed.
Kai and I talked about it later, and he asked if such
impairment is frustrating for me.I
would have thought so, too, but, in fact, it hardly bothers me at all.I’m cognitively impaired, I understand I’ll be
increasingly limited and, importantly for me, that I am not to blame, so it’s
been easy to let it go.I remain
surprised by such equanimity, which had previously not been my forte, to put it
mildly.I’m very grateful.
In diagnosing cognitive impairment, there are several
different domains.Most common in
Alzheimer’s is problems with memory, the so-called “amnestic” type.Non-amnestic symptoms include limited
abilities to make sound decisions, judge the time or sequence of steps needed
to complete a complex task, interact socially, or translate visual cues.In addition to a dominant impairment in
memory, a second, lesser impairment in another of these domains is additional
evidence for Alzheimer’s.
What surprises me is how symptoms can be so
specific.Despite my inability to
assemble the door to the cabinet, I was able to analyze several single-step
problems that initially confused even Kai.Also surprising is how sporadic symptoms can be.On another day, I could probably have gotten
the cabinet door assembled.
Since I began this blog in January, I’ve received
hundreds of comments and emails in response.Many have written to express appreciation for my posts and the
subsequent comments.Especially over the
last two weeks, people have written to encourage me to keep writing despite the
of my own diagnosis.It’s very
gratifying, of course, but I do ask myself why the blog is so helpful.
Part of it, I think, is that I try to speak honestly,
and that seems to encourage others to respond in kind.Isolation is a source of great pain for both
the caregiver and the person with Alzheimer’s (or other cognitive
impairment).This is still a disease
that provokes shame;
most people are afraid to speak of it or relate to it, which leaves both the
person with Alzheimer’s and their caregivers alone with their disease.But here in this blog, the taboo can be
broken, and we can think and speak more openly, sharing with one another, overcoming
to some degree our isolation.For some
readers, it seems that the embarrassment and humiliation are so acute that simply
reading here about others’ openness and honesty is cathartic.
I’m reminded of Alcoholics Anonymous (AA),
actually.A close friend suffered from
alcoholism for many years.Before she
got sober, I suggested a few times that she attend AA.No,
she said.She wanted to get sober on her
own.She didn’t want to be with those people.She tried to stop several times on her own,
but it was only when she finally started going to AA that she began to recover.AA very quickly became the lifeline that
enabled her to stay sober.For many
years she went at least daily (sometimes several times a day), even when she
was traveling.Today, years later, she
still goes almost every day, and many of her friends are exactly “those people”
she previously didn’t want to associate with.
AA is many things, but at its heart it’s a place where
alcoholics can share openly about the day-to-day struggle to remain sober.There’s no “cross-talk,” that is, no one
criticizes you, gives you advice, or even comments on what you said.Meetings are confidential, so members feel
safe to speak candidly.Much of the
miracle of AA, it seems to me, is simple: if I can talkwithout fear of censure about my pain and if others will simply
listen and understand, my pain becomes more bearable.
I wonder if this blog doesn’t operate in somewhat the
same way.Emails sent to me personally
and comments on this blog frequently commend my “honesty” in describing my own
struggle with my impairment.Part of
what they are referring to, I think, is that they have no safe context in which
they can speak openly about their experience: their fears, their grief, their
mistakes, their anger, or even their joy.It’s not difficult to speak honestly when we feel secure and protected,
so I’m assuming that those who find my candor helpful don’t have many places
where they feel safe enough to speak honestly.They have no Alzheimer’s Anonymous.
Actually, there are groups all across the country that
may be the equivalent of Alzheimer’s Anonymous.The Alzheimer’s Association has lists
of groups for caregivers and increasingly of groups for those with impairment
themselves.The groups are sorted
geographically so that you can find one in your area.People write that these groups can be their
lifelines.But too many people, I
suspect, continue to struggle in isolation.
We all need a place where we can share without fear about
the realities our experience, where another person will listen without judgment.This blog is one such place for me.It’s my hope that each one of us touched by
this disease will find his or her own place to speak and be heard.
I notice that I’m allowing the uncertainty of my
diagnosis to inhibit my blogging.As I
said in the last
post, the uncertainty is not that difficult for me personally; my symptoms
are no less real to me than before.I do
realize, however, that, for many other people, the lack of objective evidence
of cognitive impairment renders the value of this entire endeavor questionable.Whatever my subjective experience, if there’s
no medical evidence of Alzheimer’s (or, worse, no evidence of cognitive
impairment at all), then, for many others, this blog might be an interesting
study in psychosomatic illness but of little interest to those who are
concerned about the inner experience of Alzheimer’s.For those particular people, my writing about
my symptoms may seem an almost pathetic, last-ditch attempt to convince myself
and my readers of the reality of these symptoms.
All of which makes me a bit defensive writing this
blog.Nevertheless, this blog is about my
experience of whatever-I-have, so that’s what you’ll get.In fact, of course, the doubt of others and
my defensive reaction to it are all part of the process, anyway.I just wanted you to know what’s going on
internally as I try to sort out this new phase.
Anyone with early Alzheimer’s, I suspect, has such
doubts.As I’ve worked with my
uncertainty of the past few months, it’s been helpful to categorize my symptoms
into two rough and overlapping groups.
First, there are the
“Well-that-could-happen-to-anyone” complaints, such as loss of memory,
difficulty in word finding, deterioration of my ability to type, and so
on.Everyone has experiences like these
and they increase as one
ages.They’re poor evidence of
Then there are the “Now-that’s-real-impairment”
lost in a place I knew fairly well, the severe loss of ability to work with
with the keys and others. These are
not easily dismissible.
Over the course of the last three years, I’ve had a
number of the latter “Now-that’s-real-impairment” symptoms.They occur only infrequently—the last was at
the beginning of August—but they’ve been important in helping me and others to
accept my diagnosis.
There are also two things about the “Well,
that-could-happen-to-anyone” symptoms that remove my doubt.First, their frequency has been staggering:
I now search around the house multiple times a day every
day to find things I’ve just put down.Not
only have lost my beltpack three times over the past couple of years but I
would also have lost it several more times if someone else hadn’t noticed and
pointed it out to me.
Anyone can have trouble word-finding, but I am daily having
to use less-than-satisfactory substitutes for the word I want
Second, these symptoms may be normal for some people
but they are decidedly not normal for me.
It wasn’t until yesterday when I reread last
week’s post on the difference between Alzheimer’s and normal aging that I
recognized I’d written about the same thing at least twice before (here
I’ve been forgetting some of the “shortcut keys” that
I’ve used in my word processing program almost every day for over ten
years.Only later do they come back to
me.My wife Marja is unimpressed: “I
can’t remember any of those shortcuts at all.”
Maybe some other people have trouble with such things,
but I never did before.
Because I’ve been aware, however, of how my normal
tests this might seem to some others, I’ve become almost embarrassed to be
writing these posts.But then I remember
the purpose of this blog: to describe my own experience of cognitive
impairment, whether or not it’s convincing to others.I’m to write down the truth of my experience,
and it’s up to others to decide whether it’s helpful for them or not. My truth at this point includes my defensiveness and my reluctance to write about my
symptoms.If this turns out to be a
chronicle of a “worried well,” so be it.