Christmas Vacation

On Amtrak to Napa CA

Marja and I will be visiting our daughter and family for Christmas, and I will probably not be posting during that time. 

The Roller Coaster

Washington DC

Over the last several weeks, I’ve written about three episodes of confusion:

• when I was following directions to put a cabinet together with my son,
• when I was finding my seat in the train, and
• when I was figuring out what happened to the laundry.

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 own. 

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 months. 

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.

What Happened to the Laundry?

Washington DC

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 cycle.
• 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.

I’m having these episodes more often, though: putting the cabinets together with my son Kai, confusion on the train, and now this.  It’s nothing dramatic like getting lost and it’s a very slow and uneven process, but the impairment does seem to be worsening. 

Flowers for Algernon

Washington DC

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 beginning. 

Meanwhile he chronicles his own decline.  Knowing what’s coming, he has to watch himself deteriorate.  Sound familiar? 

It’s a good read, but I found two lessons particularly important.  Charlie’s intellectual 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 culturally-expected suffering.

Back and Forth

Washington DC

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 right. 

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.

Amazing!

The Elevator Version

Thanksgiving in Minnesota

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 Alzheimer’s;

·    the pattern of my symptoms is typical of Alzheimer’s;[1]

·    my medical tests have shown no evidence for any other cause of cognitive impairment;

·    therefore, I’m convinced, the likelihood of Alzheimer’s disease is high.   

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 expressed.

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[1] 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).

The Challenges of IKEA

Seattle WA

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 not simple. 

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.

Alzheimer’s Anonymous

Seattle

 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 uncertainty 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 talk without 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.

The Truth of This Blog

Seattle WA

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 disease. 

Then there are the “Now-that’s-real-impairment” symptoms: getting lost in a place I knew fairly well, the severe loss of ability to work with spreadsheets, the episode 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 and 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.