Blog Posts from June 2013

Monday, June 3, 2013

Washington DC

Why Not Try This (2)

 Ever since writing Why Not Try This (1), I’ve remained curious about why I refuse to try alternative treatments, so this post is a supplement to that one.  With this somewhat abstract essay, I don’t expect to convince anybody else, but I do want to understand myself.

 I’m a doctor. I’m not naïve about the many problems in medicine and medical research,* but ultimately I trust them.  If there were an effective treatment for Alzheimer’s, I believe researchers would already be studying it and neurologists would be using it.  What ambitious young researcher wouldn’t want to win the Nobel Prize for discovering a cure for Alzheimer’s?

I know well that pharmaceutical companies refuse to fund research from which they can’t profit.  It’s also true that the decades of cutting federal funding for medical research has made independent studies more difficult.  Nevertheless, the government and some independent groups (eg, the Alzheimer’s Disease Cooperative Study) still fund research into treatments with no profit potential, for instance, studies of Vitamin E, Vitamin C, generic ibuprofen and several others have found no evidence of improvement and even some suggestion of harm to people with Alzheimer’s. 

Scientific method

In order to make sure it’s the treatment that’s responsible for any improvement, the scientific method requires studies that are:

• Placebo-controlled: Somebody gets the drug and the others get sugar water to make sure it’s the treatment that’s improving things and not just the subjects’ desire for it to work.
• Randomized: Subjects are placed randomly into a treatment group and a placebo group to make sure the two groups are starting from the same place.
• Double-blind: To limit bias, neither patient nor researcher knows who’s in what group or what the test results look like until after the study is completely done and reported.
• Large enough so that they’re statistically valid.  A couple of anecdotes don’t prove anything.

If a treatment doesn't prove effective in such studies, I’m not going to waste my time with it.

What's Wrong With an Anecdote?

So why would a treatment that has been effective for a number of people not pass scientific tests?

• The diagnosis may have been wrong in the first place, so a cure doesn’t imply anything about the impact on Alzheimer’s.  The husband of a friend became quite suddenly demented; he was helpless to care for himself and stayed that way for weeks.  With no real treatment, he returned to normal over several months.  Nobody knows what he had or why he’s better.   
• People with incurable diseases want to believe that a treatment will work.  The power of such faith can be staggering.  Improvement (or the belief in improvement) may have nothing to do with the actual treatment.
• We know that the symptoms of Alzheimer’s can vary considerably from day-to-day or week-to-week.  If a treatment coincides with one of those upswings, people may credit the treatment.
• Something else could be causing the improvement.  We already have drugs that improve the symptoms of the disease but don’t affect the underlying course.  Alternative treatments may also improve symptoms without affecting the disease process itself.

Why Not Try This?

All right, say my friends, why not try something anyway?  How can it hurt?  Well, any choice has side-effects.

• Many alternative treatments take significant time away from family, work, and life.
• Some of the drugs and other treatments are expensive.
• Other treatments have potential side effects: coconut oil, for instance, has high levels of saturated fat which may lead to heart attacks and stroke.
• Chasing after rainbows can become an obsession (for instance, my patient with MS in Why Not Try This (1))
• Especially since I’m a physician and a blogger on Alzheimer’s, my using a treatment just reinforces the unwarranted belief that there are cures out there. 

I’ve always tried to avoid actions that don’t make sense to me.  To try a treatment because “it can’t hurt” would be for me a form of denial.  Perhaps that’s just pride; maybe so.

To be clear, I don’t want to deter anyone else from pursuing a treatment that gives them hope or comfort.  I’m just writing to explain my rationale for refusing to consider the many treatments continually suggested to me. 

* For a devastating critique of medical research, read “Lies, Damned Lies, and Medical Science” by doctor, researcher, and statistician, John Ioannidis.

Thursday, June 6, 2013

On Amtrak to Napa CA

Variability (1): We’re Not All the Same

The silence and taboo that surround Alzheimer’s prevent our understanding that its symptoms can vary enormously from person-to-person and even from hour-to-hour within the same person.  This ignorance can lead to frustration, depression, isolation, and confusion on all sides. 

I, for instance, am quite early in the disease.  Since my cognitive impairment doesn’t yet interfere with my daily life, I don’t even qualify for the formal diagnosis of Alzheimer’s (although there's virtually no doubt that that's where I'm headed).  Sometimes I have no obvious symptoms at all.  Most of the time, you probably wouldn’t recognize my impairment.  Sometimes, however, I get pretty confused.  A few days ago, I came home from an hour’s exercise on my bike.  I was wearing my beltpack and a nylon backpack that is so light I can forget it’s there.  I had put my keys into my beltpack, but as I stood at the front door, trying clumsily to get my bike inside, I couldn’t find the keys.  I searched through the four compartments of the beltpack repeatedly.  Repeatedly.  I kept going over and over it—it may have been a full five minutes—because they just had to be there.  Finally I remembered the backpack.  I reached back, felt the keys through the nylon, and only then could I vaguely remember putting them there.  I started to take the backpack off.  The next thing I knew, I was looking through my beltpack again.  Again, I perseverated with the beltpack for what felt like five minutes, then thought (as if it were a new idea) about the backpack, and only then did I realize that it was hanging on my shoulder with the keys in it.  I had completely forgotten what I was doing halfway through taking the backpack off and had started looking for the keys from the beginning again.  Now, that’s pretty confused.

I’ve had a few other periods of confusion.  Three years ago an entire day disappeared from my memory.  Last September I got lost riding my bike through a very familiar area and there have been two other similar episodes.  When I’m writing or am otherwise at the computer, I have difficulty holding several things in my mind at the same time and can get confused.

But most of the time, I’m not impaired except for my memory.  Sometimes even my memory kicks in. Talking with a friend the other day about an event several years ago, I was able to remember the name of the person involved, even though that had been the only time I’d met him.  “Your memory is lots better than mine,” said my friend.

Alzheimer’s symptoms also vary greatly from one person to the next.  For me, the affliction is primarily in the area of medium term memory loss and loss of the ability to calculate and occasional confusion; it’s not (yet, anyway) in the area of intellect, personal relationships, reading, and so on.  For other people with Alzheimer’s, personality changes may dominate: outbursts of rage or paranoia, hypersexuality or accusations of infidelity while they can still function in most other areas of daily living. 

Other people have so much trouble with word-finding that they seem almost unable to speak, yet their intellect remains intact and they crave good conversation.  For still others it’s getting lost easily.

This variability doesn’t fit into Alzheimer’s public image, which is of advanced disease, so other people’s reactions can be difficult to deal with.  I’ll explore some of those reactions in the next post.

Monday, June 10, 2013

Napa, CA

Variability (2)

In the previous post, I described how my symptoms come and go and how symptoms—especially in the earlier stages—can vary greatly from person to person.  This variability can be confusing to others. 

The Public Image

The public image of Alzheimer’s disease is the blank face of the old person, unable to recognize her family, wandering away from the nursing home, slumping in a wheelchair drooling, or lying like a vegetable in a nursing home bed while medical people try to prolong her life indefinitely.  That public image doesn’t include the person like myself who has only mild cognitive impairment or the person with significant symptoms who is able to hide his impairment well.  And it doesn’t include people who have profound difficulties in one area but are only mildly affected in others.

The result is a series of misunderstandings.  On the one hand, other people tend to doubt the diagnosis of a person with only mild symptoms that aren’t really noticeable.  On the other hand, people tend to treat those with noticeable symptoms as if they were more profoundly impaired than they actually are.  The public image has no middle ground, no place for the wide expanse of impairment  within which the person with Alzheimer’s may live.

Mild Cognitive Impairment

To take an example, my Alzheimer’s can so far be recognized only by a careful observer, yet, as I wrote in Variability (1), I am myself aware of intermittent confusion and difficulty word-finding.  Many others who have written me in response to this blog have had a similar situations.  If we mention our symptoms to other people, they frequently discount them, ascribing them to other things: to normal old age or inappropriate concern about old age, to normal forgetfulness (“I know just what you mean; I have the same thing”), to anxiety or depression.  Sometimes, they will acknowledge the changes are abnormal but be reluctant to accept the diagnosis: It’s “just one of those weird things that can happen to anyone.”  When I described my $24,000 bookkeeping error, my friend replied that that wasn’t so bad, suggesting that it may have been just poor concentration or sloppiness in my work. 

These responses are well-intentioned.  People want to be empathetic and comforting, to assuage our fears, and to include us in their circle.  The issues of embarrassment (2) (3) and fear that are associated with the disease also play a role, of course, but the reality is that we don’t fit the image most others have of Alzheimer’s.  It’s hard to blame them for misunderstanding.

The conclusion a person with mild impairment may come to, however, is that others won’t really listen to his confusion and pain over what’s happening to him.  How can this be happening to me?  What do these symptoms mean?  How fast is this going to progress?  If my friends and family have trouble believing that I have Alzheimer’s, where is the place for my pain?  We become needlessly isolated … our worst fear.

More Severe Symptoms

The other side of the problem caused by the public image is that the extent of a person’s disease can be overestimated.  He may get lost repeatedly, or forget familiar names, or become otherwise confused yet retain a normal sense of self and capacity for relationship.  Others may nevertheless treat him as if he were far more demented than he actually is and, often, avoid him, afraid they would be unable to relate to him. 

In Speaking Our Mind, Lisa Snyder tells of a man whose impairment was an extreme difficulty finding words.  He was almost incapable of responding verbally.  It was easy to interpret his inability to respond as proof of advanced disease and believe that real communication was impossible.  Yet the man was still hungry for intellectual interaction, in which he was able to participate in as long as Snyder was patient enough to let him find the words on his own time. 

Another example: Unless you knew that personality changes could be a primary symptom of the disease, it would be easy to assume that, say, the very paranoid person in the nursing home is just out of it.  And if that person’s mind were actually fairly clear yet she’s been treated as completely demented, she would then have good reason to be paranoid.

As Lee Ann Gerleman reminds us, the person is still in there, often aware of much more than we think she is, hungry for love and attention.  She may have forgotten that the little girl who comes to visit is her granddaughter, but she loves that little girl who visits and laughs with her, anyway.

But too often we treat them as children, speaking overly slowly or very loudly or, worse, just ignoring them and talking only to the caregiver.

General Misunderstanding

The faulty public image of the disease, then, can lead to frustration not only for mildly impaired people who are treated as if everything is okay but also for people who are only moderately impaired and treated as out of it.  Either can lead to frustration, depression, isolation, and confusion.  It’s important we lift the taboo and get the disease out of the closet, so that all of us can understand better what’s going on.  It could at least mitigate the isolation that is such a painful part of Alzheimer’s disease.

Thursday, June 13, 2013

Napa CA

I’m spending a week in Napa with my daughter Laurel and her family.  Last evening I helped Laurel put together fifteen 100-page training manuals for her work.  The job was fairly simple: punch three holes in each of the pages, insert tabbed dividers between the pages to create ten different labeled sections, and put them all into a three-ring folder. 

As I worked, I found myself increasingly confused, forgetting where I was in the process, combining two sections without a divider, or removing a section divider from one manual and inserting it into the other, duplicate.  Then once I would notice the mistake, it took me forever to figure out what I’d done and correct it.  But eventually I could figure it out. 

I’m used to this level of impairment by now, so it wasn’t terribly frustrating.  Nevertheless, I was grateful for Laurel’s response: She noticed my confusion and said something about the task being more difficult than she’d expected.  She wasn’t pretending my confusion was completely normal (“the old I-know-just-what-you-mean-that’s-happening-to-me-too trick”), yet she was comforting me by acknowledging that I didn’t have to be completely demented to be having some trouble.  I was happy that we’d developed a comfort with acknowledging my cognitive impairment.

I’m reading Lisa Snyder’sSpeaking Our Minds, a series of fascinating interviews with people at various levels cognitive impairment.  Commenting on one interview, she writes, “[The person with Alzheimer’s would not be made to feel inferior by Alzheimer’s.”  My emotional reaction, of course, was to make it all about me: “Who are you kidding?  Of course, I’m going to feel inferior: my mind is going while everyone else’s is not.”  But a little reflection changed my mind.  Obviously, my skills and abilities will become inferior to other people’s, but that doesn’t have to make me feel inferior as a person.

I used to be a competitive cross-country ski racer.  Now, due to a numbness in my feet (unrelated to Alzheimer’s), I can hardly stand on skis.  I’m clearly an inferior ski racer, yet, given my condition, no one would think it reflected on my inherent worth as a person.  The same would be true for cancer or almost any other non-mental chronic disease.

But it’s different with Alzheimer’s or any other cognitive impairment (just ask any mentally retarded person).  There’s a temptation to see  cognitively impaired people as less worthwhile, to feel comfortable avoiding or ignoring them.

So far, I’m actually feeling better about my worth than before my disease.  I have the best of both worlds: My symptoms are hardly noticeable to others, yet I get lots of credit from other people who think I’m handling it so well emotionally.

Will that change as I lose my capacity to drive and, thus, my independence; as I lose my capacity to speak cogently about my illness; as I can’t really take part in the normal life of the community? 

Probably … at least to some degree.  On the one hand, so much of my image of myself has been wrapped up in my sense of intellectual superiority.  What will happen to my image as that disappears? 

On the other hand, I have a solid confidence in my self-worth.  I have a brain disease, and intellectual loss is simply what happens.  It doesn’t reflect on self-worth any more than my incapacity as a cross-country skier.  Will that be one of the things I can remember that as the lights go out? 

And, if I can’t remember my self-worth, won’t my increased ability to express love and affection (that’s been generated by this disease) buoyed by the love and support of my family and community sustain it?  No one, of course, can predict much in this unpredictable disease, but I have some confidence that they will ameliorate my sense of inferiority.  It’s one of those things I’m curious about.

Friday, June 21, 2013

Kansas City, MO

Do I Really Want To Know?

I was visiting Elsie, a friend with moderate dementia, the other day.  I was curious to know whether she had Alzheimer’s and, if so, how she was dealing with it.  Elsie had been very important in my life for almost twenty years before I moved to a different faith community about ten years ago, and I hadn’t seen her in while.  I’d heard reports that she’d become forgetful; she things she’d said a few minutes ago; she sometimes didn’t recognize people who should have been familiar to her.  She remembered me because our relationship went back thirty years.  (Alzheimer’s affects short-term memory much more than it doesn’t long-term memory.) 

Elsie greeted me warmly.   She’d always been an energetic, gracious and humble presence, and that hadn’t changed at all.  It was almost as if we were continuing our relationship from where we left off so many years ago.  Elsie is certainly not in denial about her memory loss; she refers to it easily, with good humor and without self-pity.  In the context of talking about her memory troubles, I told her that I had some memory problems, too, and that I had a diagnosis of Alzheimer’s.  (I have to admit I was trying to manipulate her a little to see if she’d mention “Alzheimer’s” in reference to herself.)  Perhaps Elsie knew what I was getting at, for she interrupted me and said, “Oh, I don’t think it’s that important to know the diagnosis, do you?”  (For Elsie the “do you?” at the end of a sentence is not so much a question as a restatement of her belief.)

What an interesting response!  Elsie has no trouble acknowledging her impairment, but doesn’t want her diagnosis pinned down.  Does she suspect it’s Alzheimer’s and doesn’t want to think about the implications?  Does she want to avoid a label that would spread through the community and stereotype her?  I interpreted her rhetorical “Do you?” as a desire not to continue that discussion, at least not then.

 That conversation came back to mind this afternoon.  I’m in Kansas City and gave a talk at a medical conference about my Alzheimer’s.  After the conference wrapped up, I met with Ron, a friend from Minnesota I hadn’t seen in thirty years.  We spent a couple of hours reminiscing and talking theology.  As he dropped me off at the hotel, Ron mentioned that he, too, had been bothered by his increasing forgetfulness and wonders whether he ought to get it checked out.

He was implicitly asking the question Elsie didn’t want to ask: Was there any reason to get tested to find out if he had Alzheimer’s? 

My response is equivocal.  The one reason that argues strongly for getting checked out is that only 80% of people with dementia have Alzheimer’s.  A primary purpose of an early neurological exam is to rule out the causes of the other 20%, some of which are treatable.  Parkinson’s disease, for instance, is at least partially treatable.  Small strokes can also mimic Alzheimer’s, and in that case aggressive treatment of cardiovascular disease might prevent progression.

Personally, I wanted to know right away.  My impairment—not only in memory but also in computation and some degree of confusion—had become obvious to me.  If there was an explanation, I wanted to pin it down rather than fantasize or worry that I was going nuts. 

Other reasons for early testing I’ve thought of—the need to do long-term planning, wanting to know before others begin to wonder what’s going on, wanting to make sure I’m not a danger to self or others—seem less important to me than they originally did.

I was aware of my symptoms well before anyone else noticed.  And I doubt I’m unique.  It seems to me that anyone who is interested and open to knowing about Alzheimer’s and who is paying attention to his cognitive state is going to notice symptoms very early.  Ron’s already worried about his memory.  If other symptoms develop, he’ll undoubtedly notice early and get tested.

At one point, I thought an early diagnosis was important to making future plans.  Financial decisions for Medicaid, for instance, must be made five years before application.  One should certainly not wait too long before making plans, but I’ve been having symptoms for over three years, and it seems there will still be plenty of time before I need nursing home care. 

I was also originally concerned because I wanted an early diagnosis that I could share with friends before my symptoms became noticeable, before they were reduced to whispering behind my back.  I wanted to be able to ask a professional (my neurologist) help determine whether I could safely drive.  But it’s now pretty clear that I’ve been aware of symptoms long before others noticed and that my concern about my own ability to drive is higher than the state’s or the insurance companies’. 

Elsie is almost ninety.  She’s well aware of her impairment.  I agree with her that there’s no reason she needs to use the A-word.

Ron’s only symptoms are memory problems.  If they are due to Alzheimer’s, he’d be very early in the disease and there would be little objective reason to get tested while his symptoms remain limited.  It would be a while before others noticed or he became a danger to anyone.  In my own case, I just wanted to know what was going on.  Ron’s enough like me that he’ll probably have an early evaluation, too.  But if another person wasn’t particularly interested, I’d certainly not push her to be evaluated until symptoms became far more obvious than Ron’s.

Monday, June 24, 2013

Washington DC

Fellow Traveler

I’ve just returned from visiting my daughter and her family in Napa, CA.  On the train trip there, I met Kalju (pronounced “Kal-you”), a seventy-nine-year-old immigrant from Estonia who regaled me with stories of his past. 

Kalju was seventeen when, early in World War II, the Soviet army occupied Estonia.  He was about to be shipped off to Siberia when his Soviet employer notified authorities that he’d been servicing army trucks and was therefore vital to the war effort.  Shortly after, when the Germans drove the Soviets out and occupied Estonia, Kalju was sent to a work camp in southern Germany.  After the war, he immigrated to Winnipeg, Manitoba, where he worked as a laborer.   He was transferred for a while to Churchill in the far north on Hudson Bay.  He worked his way through high school until he immigrated to Chicago, where he was educated as a social worker and ultimately worked with African-American children in a Chicago ghetto for twenty years.  During the 1968 riots, young African American men rolled his car over 1½ times and left him upside down in the car; on another occasion he was almost hammered to death until others intervened.

He was accompanied on the train by Judy, a 46-year-old author, and her daughter.  Judy had known Kalju for decades and recently decided to write his biography.  They’ve become close friends.  Judy and her daughter accompany him in his frequent travels, in part because they enjoy his company, in part because he needs their help.

I had talked with Kalju for an hour before I recognized his dementia.  We’d been on the train for over 24 hours, yet he asked Judy for the directions to the bathroom, which was on the first level of the same car.  A few minutes afterwards, he came back to ask directions again.

I later talked with Judy.  Kalju’s symptoms, she said, can be pronounced but are extremely variable.  He recognizes his poor memory and his reliance on Judy and her daughter for orientation, yet he denies any general cognitive impairment.  When I mentioned my Alzheimer’s to him, he said he was glad he didn’t have anything like that: His head simply had too much information, and there wasn’t room for anything new.

Shortly after meeting Kalju and deciding to write his biography, Judy realized that, while he told wonderful stories, he repeated them frequently.  She’s now heard each of his few stories many times and realized she can’t write an autobiography with so little material. 

Kalju can be quite disoriented indoors, she tells me.  In a hotel room, for instance, Kalju has to ask every day where the bathroom is.  Outdoors, however, he can go for long walks, even in unfamiliar environments, and never get lost.  Judy has witnessed personality changes too, like when Kalju explodes in anger for no apparent reason.  Often he apologizes but may later deny that the incident happened.

His judgment is sometimes impaired.  They were once on a city bus riding through a poor, inner-city ghetto.  Although the bus was full of African Americans, Kalju began talking loudly about the two times in Chicago he’d been attacked by young black men. 

She has also noticed that, in the moment, he’ll recognize his poor memory, his disorientation and his need for assistance, but, when the moment is past, he doesn’t seem to remember these episodes of confusion, adamantly denying any impairment. 

As I discovered when I engaged him in conversations, his impairment is not immediately evident and he can be quite lucid: I might never have realized he had dementia had I not witnessed his repeated asking for directions to the same place.  He doesn't fit into the stereotype of Alzheimer's.  He is able to maintain good relationships.  He can go on long walks outdoors without getting lost or disoriented.  His life appears full. 

He helped me to see that life with Alzheimer's – even when symptoms are becoming more evident – does not have to lead to early isolation.  It’s comforting.

Thursday, June 27, 2013                                                              

Washington DC

Decline

I originally started writing today to review how slowly the symptoms of my Alzheimer’s have progressed and what that’s meant for me.  But after reviewing where I thought I was, I decided to take an Internet IQ test to get another perspective.

In my review, it was clear that some of my symptoms haven’t progressed at all since my diagnosis last September.  I haven’t gotten lost again.  I actually notice improvements in my relationships.  I’m still losing lots of things, but it’s not much worse than before.  My lecture in Kansas City last week went well. 

Some things have gotten worse.  The confusion and blank-out during the keys-at-the-front-door incident were new.  I’ m less able to do arithmetic in my head, reconcile the checkbook or handle complicated data.

Yes, there are some changes, but not as many as I expected by now.

But then I took that Internet IQ test.  Surprised by the results, I took another, just to check.

(Now, before anybody comments on how unreliable Internet IQ tests are, I know, I know.  But I’m not looking for a precise score, and I don’t need the test to be as comprehensive as a more sophisticated exam.  And although the items in each of the two tests were quite dissimilar, statistically the results were the same in each test.)

What was more revealing to me than the final numbers, actually, was my difficulty in completing some of the tasks in the tests.  I’ve always been good at the kinds of abstract tasks that were on the tests.  This time, however, I was astonished at what I could no longer do.

I wasn’t surprised, of course, that my memory was shot. 

But I was surprised at my limited ability to recognize the logic in the progression of patterns.  This is a task I’ve always been good at.  As an example, there will be 3 different patterns in each of three rows.  The first row might have 1 circle in the first box, 2 circles in the second box and 3 in the third.  The next row has one square in the first box, 2 squares in the second and 3 squares in the third.  The third row has 1 triangle in the first box, 2 triangles in the second and the task is to pick from a group of ten choices what comes next, in this case 3 triangles.  The patterns become progressively more difficult, of course, but—very early on—I just couldn’t recognize them. Wow! I thought, that’s a big change.

I had a similar problem with a task in which I was instructed to pick out which of the ten digits was missing from a row of the other nine digits and to pick out from a second row of letters, which letter was repeated.  Those should be easy, quick tasks, but I was slow … really slow.

My IQ used to be something over 140, not “genius” but “superior.”  But I was shocked that, according to the two Internet tests, it’s now slid to about 100, normal.  While there’s something to be said for finally being normal, sliding from the 99^th percentile to the 50^th a big drop.  This formal testing makes it clear that I’m more cognitively impaired than I thought

As has been usual during this whole illness, however, I feel a strange equanimity.  What did I expect?  To get smarter?  For whatever reason, the decline just doesn’t bother me.  What’s more curious to me, however, is that I don’t notice any change in my experience of my self.  Surely that experience changes at some point in this disease. But it hasn’t yet. 

More on that in the next post.

Sunday, June 30, 2013

Washington DC

Self

Many caregivers have commented in this blog or in personal emails that—even in quite severely demented people—the essential “person” seems to remain.  Lee Ann Gerleman writes that the people she cares for are still in there, even though we only get a glimpse of them from time to time. 

What it’s like for them?  Who is that person behind the mask of severe dementia?  How do they experience themselves? 

In the novel Still Alice, Alice Howland, a 50-year-old internationally-known college professor, tells (from her own point of view) the story of her journey into dementia.  As she loses more and more of her memory, there is no sense that she experiences herself differently.  Eventually, her husband becomes the “kind stranger” who walks her home and her daughter becomes “the woman in the red dress.”  It’s a powerful story … and believable, but the question remains: What is her experience of her self as memory fades?

As I described in my last post, I’ve lost more of my ability to think than I’d previously thought, but I don’t, as yet, experience my “self” any differently.  Self is tricky to define, but, to be academic for a moment, the dictionary takes a crack at it, defining self as my essential being.  It’s completely subjective; only I can know my essential being.  Cognition, on the other hand, includes knowing, remembering, judging, and problem solving.  My self is what I am; cognition is my abilities, which can be roughly measured objectively.

It’s the sense of who I am that hasn’t changed.  It’s as if my self looks out at all the cognitive limitations from behind a curtain, is aware of them, but doesn’t have any sense that this “I” behind the curtain has changed.  Here in the present moment, I seem no different than I ever was.   

True, I am early in the disease, but since I’ve already lost so much cognitive ability, you’d think that I’d already be experiencing myself as at least somewhat changed.  Will my essential being seem any different when I can’t remember Marja’s name?  Who will this “I” be then?  And if my self is going to be different, will that change be abrupt or gradual?

I thought about it again this afternoon as I walked with a friend I’d known for thirty years.  Although we hadn’t been close, she seemed to know me (probably because I come from her more distant past).  Four times within a few minutes she asked me how old I was.  Each time I answered, 68, she stared at me with a twinkle in her eye and said, “You look so young.”  Clearly she was still there but it also seems to me that she experienced herself as she always had.

I suspect that much of the cultural fear of Alzheimer’s is that we’ll lose our selves.  But what if we won’t?  What if the I persists beyond memory and mental capacity?  Wouldn’t that be interesting!  Would it decrease our fear?  What might it reveal about the nature of human consciousness?

July 2013 Posts

Jump to my blog

Blog Posts from May 2013

Tuesday, May 2, 2013

Washington DC

Embarrassment (1)

Rachel, who reads this blog regularly, recently emailed me about her father, a retired physician with “vascular dementia” ie, caused by small strokes.  When her father first started having symptoms, Rachel and her mother refused to accept a doctor’s diagnosis and, until her father’s symptoms worsened a year later, never mentioned the word “dementia,” even though her father seemed to have significant insight into his intellectual limitations and got on with his life within those limitations. He’s now in a nursing home, confined to bed, and can’t walk or feed himself although Rachel still enjoys her visits.  “Some days I might be his daughter, other days I might be ‘a girlfriend’ or just someone he knows.   I get rewarded by this and his humor which helps my heavy heart.”  But Rachel wonders why his many friends from his life before dementia have stopped visiting him. 

Rachel’s mother developed symptoms about a year later, apparently from Alzheimer’s.  Unlike her father, Rachel’s mother is still in “cover-up mode,” not yet acknowledging her diagnosis, hiding her symptoms skillfully from other people.  She and Rachel collude with one another, ignoring the impact of the silence on their relationship.

Rachel met one of her mother’s friends in the store who asked, “What’s wrong with your mum?  Has she been given a diagnosis?”  Rachel was unable to tell her mother’s friend the truth.  In fact, she covered up for her mother, making the usual excuses, because, she said to herself, she didn’t want her mother’s friend to stop visiting!  The questions make clear, of course, that the friend already knew: There was something wrong and it was some form of dementia.  The secret, however, though hidden in plain view, had to be kept secret.  The friend knows yet has to pretend she doesn’t.  Rachel herself feels the embarrassment to the point of shame.  My own guess is that the friend would visit more often if things were out in the open.

The common theme throughout Rachel’s experience is embarrassment and shame.  In retrospect, Rachel can see the shame first descending when she and her mother refused to acknowledge her father’s dementia—despite its obviousness to both of them, despite even her father’s acceptance of his symptoms.  When her mother began having symptoms, mother and daughter again continued the denial. 

Shame and embarrassment hover like clouds over dementia, especially Alzheimer’s.  When Rachel did finally begin talking about her father’s dementia, in fact, she noticed how much more comfortable it was to talk about her father’s “vascular dementia” than “Alzheimer’s.”  Rachel acknowledges that most of her mother’s friends know that she “has lost it” (as they like to say), however not one of those friends has mentioned the word “dementia” to her.  The word “Alzheimer’s” is still not mentioned around their home.  There’s an overpowering taboo: We all know what’s going on, but we don’t want to acknowledge it or face it. 

Why do her father’s friends stay away?  My guess is that they’re afraid they won’t know what to do in the presence of dementia, that they’ll be embarrassed by Rachel’s father’s condition.  What do you say, after all, when your old friend doesn’t remember you or repeats himself every five minutes, or does something else embarrassing.  (I certainly had those fears before my diagnosis and to some extent I still do.)  We believe we’ll feel uncomfortable, so we stay away, leaving our friend suffering not only from limited cognitive function but also from isolation and perhaps increasing shame, too.

I recently listened to a brief podcast in which several experts were asked to respond to the question of why people fear Alzheimer’s so much.  None of them mentioned embarrassment or shame as important factors, which seems astonishing to me!  Isolation may be the worst part of the diagnosis, and shame and embarrassment are the primary causes of isolation.  If we don’t recognize the embarrassment, much less acknowledge it, we can’t confront it and work it through.  Through writing this blog and reading the comments and emails, I’m beginning to think that embarrassment and shame are among the worst parts of this disease.

There are over five million Americans with Alzheimer’s, more if you include other forms of dementia.  By the time we reach 85, half of us will have Alzheimer’s.  This is a common disease that almost everyone has some direct contact with, yet it’s somehow become shameful.  It’s all around us, yet it remains hidden in the closet, causing so much isolation and fear.  It’s past time we got it out of the closet and into the light.

Monday, May 6, 2013

Washington DC

Embarrassment (2)

In my last post I wrote about the general embarrassment that surrounds Alzheimer’s.  Embarrassment may not seem like such a big deal, but I believe it has a lot to do with the isolation of people with Alzheimer’s.  And isolation is a big deal!

I think it may be helpful to break the embarrassment into two different pieces: the embarrassment that a person with Alzheimer’s feels for her own behavior and the embarrassment that others feel in the presence of a person with Alzheimer’s. 

As you’ve probably figured out if you’ve been reading this blog, I haven’t felt embarrassed or ashamed of my Alzheimer’s disease … at least not yet.  It’s true that my disease is early and my behavior not yet too gross, so things may change.  But I think the reason I don’t feel embarrassed is because I’ve told most everybody I’m around. 

I’ve always had trouble remembering names and faces and, in the past, it’s caused me lots of embarrassment.  I felt stupid and I worried the other person was offended. 

Shortly after my diagnosis in September, I started slowly telling people: my family and closest friends, our small faith community, my email contact list, and finally the whole world through this blog and the Washington Post.

My memory has now gotten much worse, of course, but now we all know why.  I know that there’s a reason beyond my control for my declining memory and I don’t worry the other person is offended.

When I forget names or get confused in conversations or forget to do things I’ve promised to do, I now make some reference to the Alzheimer’s disease, we all shrug our shoulders and we continue on.  In December, I made a $24,000 mistake in figuring out our faith community’s next year’s budget.  Before I discovered the mistake, we’d already allocated the money to various missions, so it was a mess.  Previously, I would have felt hugely embarrassed and ashamed and it would have taken me weeks to get over it.  This time, none of us was very happy, of course, but, because everyone knew my condition, no one was resentful, and I wasn’t embarrassed.  (Yes, it was clear that I shouldn’t continue as bookkeeper, however.)

The other evening at a reception, I was talking with a woman I knew socially about Alzheimer’s in her family and about her concern over her own symptoms.  Because there’s a big difference in heritability between autosomal dominant (“early onset”) Alzheimer’s and the normal later-onset disease, I was curious about her age and said, impulsively, “You’re about 55, right?” 

Umm … it is it highly unacceptable in American culture to suggest to a forty-four-year-old woman that she looked like she could be fifty-five.  Under other circumstances, I would have been mortified and would have spent the rest of the evening trying to make excuses.  But I wasn’t embarrassed.  We lose some of our inhibitions with this disease, and—despite the fact that I’d just steamrolled a social norm—I just rolled my eyes, as if to say, “What do you expect?”  As the evening went on, she mentioned my faux pas several times; I just kept rolling my eyes.  I knew that in the normal social context it was unacceptable; but both of us knew that Alzheimer’s had changed that context.  She may still have been offended, but I wasn’t embarrassed. 

So at this early stage in the disease, I don’t feel very embarrassed because I’m aware of a new context.  At some point, of course, I’m going to get to the place where I won’t be embarrassed because I won’t realize I ought to be.  Other people, like my wife Marja, may be embarrassed, but I won’t be.

It seems to me, then, that the isolation that plagues so many people with Alzheimer’s is not because of their embarrassment, but the embarrassment (or fear of embarrassment) of friends or family that threatens them and drives them away.  I’ll look at that in a future post.

I’d be very interested in getting comments from any of you with relatively early disease who have made a deliberate point to inform other people.  What has been your experience with your own embarrassment?  Have you regretted going public?

Thursday May 9, 2013

Washington DC

Embarrassment (3)

For the past two posts I’ve been trying to circle around this terrible stigma that hangs over Alzheimer’s disease and creates so much isolation and suffering.  I’ve been trying to figure out what the stigma is.  Why do people draw away?  Why is this common disease such a mark of disgrace that brings shame and embarrassment to so many who are associated with it? 

But after spending many hours on this post, I’ve decided I don’t really get it.  I don’t personally experience the stigma or shame myself, and I don’t think I know much more than anyone else about why other people feel that way.  I’ve gotten lots of comments, each offering different perspectives that may be part of it.  As I wrote about in the first post of this series (Embarrassment (1)), people feel embarrassed because they don’t know what to say or do; they imagine themselves in similar situations and become afraid; perhaps they detest a human being who has lost control over himself.  I don’t know any more than I’ve already written.

But let me tell you just one story about the stigma. 

Even the word, apparently, is unspeakable.

A week after a lengthy feature article about my Alzheimer’s came out in the Washington Post, I was at a large function with many people who knew me fairly well, hadn’t previously known about my diagnosis, and yet had seen the paper.

Perhaps thirty people approached me to talk about “the article in the Post.”  They referred to “your condition,” they asked “how are you doing,” or said to me “how courageous you are,” but not a single person among the thirty mentioned the word “Alzheimer’s.”  I knew I had Alzheimer’s; they knew I had Alzheimer’s; I knew that they knew; they knew that I knew, but the word itself remained unspoken.

Sunday, May 12, 2013

Washington DC

A Longer Life

Several people with early Alzheimer’s disease have left comments on this blog.  They’ve known their diagnosis for several years and their symptoms often go back a year or two before their diagnosis.  They’re all still able to use the computer, obviously, and, according to their reports, are functioning pretty well in day-to-day life. I’m beginning to realize that this early phase of the disease can go on for quite a while.   

Jim Landry, for instance, lives in nearby Maryland, so we got together a couple of days ago to meet and compare stories.  He has known of his diagnosis for over two years.  We talked for two hours, and he told me about a number of examples of his cognitive impairment, for instance, the inability to calculate even fairly simple arithmetic, difficulty in word finding, and his reluctance to drive anywhere except very locally.  (He gets confused too easily if the traffic is at all heavy).  I was, of course, looking for impairments as we talked, but the only one I actually noticed was the trouble with word-finding.  He was skilled enough at substituting other words, however, that I wouldn’t have noticed unless I’d been specifically listening for it.  Even paying attention, I noticed only that his substitutions were not always exact synonyms for the words he was looking for.  Ordinarily no one would notice his impairment.

So in most situations, he, like me, can “pass” in day-to-day interactions with other people.  He has been completely “out” (the vocabulary around homosexuality is quite intentional) about his diagnosis and can’t imagine doing it any other way.  He’s found no reason to regret his openness.  He did have to leave his professional job because of his difficulties with memory, but that was before his actual diagnosis; his job loss was from his impairment not from his going public.    

A person who comments here frequently, “meganthemegan” reports that she gets lost quite easily but is quite comfortable asking people for help; she has trouble with social etiquette (eg using the F-word inappropriately); she can’t do basic arithmetic, and so on.  But she’s also developed a number of coping mechanisms that help her get about: becoming a “neat freak” so she can find things, writing very explicit notes to remember things, recording voice notes on her smartphone, and so on.  (The voice notes have been a wonderful suggestion that I’ve taken up; I’m not fast enough on the smartphone to write things down in a reasonable amount of time, but when something comes up in a normal conversation that I need to remember, I can dictate it pretty quickly.  When I get home, I process my notes.)

Her comments to this blog are written with no evidence of cognitive impairment.  She obviously gets around in her environment and can relate well to her friends.  By her own report, she’s impaired but she’s fully with us.  She writes,

I've given up on names and math and being a well-behaved woman. I have become better at rolling my eyes and shrugging my shoulders while smiling.  …

I have also experienced the incredible fullness of “present moments” -- love and fear, expansion and contraction. I am reminded of Rilke's words:

“Let everything happen to you
Beauty and terror
Just keep going
No feeling is final”

I’m writing about these two people in part because theirs are just beautiful stories. But they are also an indication that “real life” can go on for a long time after diagnosis.  I talked on Skype to a guy who’s had Alzheimer’s for ten years and I couldn’t detect any impairment.  I myself have declined so gradually since my diagnosis last September that daily functioning seems even to me almost normal.  

The implication is that the progression of my Alzheimer’s will probably be slower than I’d originally thought: I may be around for a good long time.

So that’s good! 

Initially, this realization brought up the question: So now what do I do with the rest of my life?  I’ve gotten to thinking of myself as a “professional Alzheimer’s patient” (with this blog, media coverage, speeches, and so on).  I’ve been subconsciously assuming that that role and my calling to “out” Alzheimer’s would occupy the rest of my life, and that would be enough!  But now there’s much more life to occupy. 

But the question of what I’ll do is really unnecessary.  This is a waiting period, and the future will show itself of its own accord.  (One of the joys of this disease, actually, has been much freedom from worrying about what I “should” do.)  I have the diagnosis; I know the basic outline of what’s coming.  I have the truly important things—relationships, community, love, meaning, an appreciation of the world’s beauty—and they will remain.  I’ve entered into a strange world as an increasingly mentally challenged person.  Apparently it’s going to drag out longer than I thought, but I’m still very curious.  It’s quite a journey.

 

I’d be greatly interested in hearing from you with a relatively early diagnosis.  If you ever think about it, what do you envision for the next few years?

Wednesday, May 15, 2013

Washington DC

Driving

When I was a family doctor in a small town, one of the most difficult tasks was telling an elderly or seriously ill person that his driving was no longer safe and he would have to give up his license.  In our culture, losing one’s driving privileges is a significant blow to the ego, especially for men.

As I was driving this past Saturday, I had a disturbing experience.  Every three or four months I drive 3½ hours to southern Virginia and 3½ hours back to Washington to visit my friend Jens Soering, who has served 26 years of a life sentence for a crime that I believe he didn’t commit.  It’s a long trip and I have to get up much earlier than usual and, since I don’t sleep well anyway, I don’t get much sleep. 

What I noticed was difficulty following the thread of conversation on National Public Radio while simultaneously paying attention to my driving.  I couldn’t follow any concept that required concentration.  It seemed that I could only pay attention to one thing at a time, either the driving or the radio.  I was concerned that if I tried to pay enough attention to the radio to understand, I wouldn’t be able to drive as well.

I didn’t have the same trouble driving back to DC that afternoon, so I assumed my trouble had just been my tiredness from too little sleep, but it got me to thinking about driving in the face of my diagnosis.  Ordinarily, I feel no deterioration in my driving ability compared with my skills before my Alzheimer’s diagnosis (but, as we’ll see below, it turns out that my own rating of safety doesn’t mean much).  My neurologist—using the nationally recognized neurology standards—isn’t concerned.  But if I did have a serious accident that was judged my fault, would I be risking my insurance company refusing to cover me?  Or even that I would face criminal charges for negligence?  I could just imagine myself in a court room as the prosecutor intoned: “Dr Hilfiker you knew you were cognitively impaired and yet you put yourself behind the wheel of a car.  What can you say to this family of the little girl who died as a result?”  OK, a little melodramatic but you get the point.

Should I be driving?  It’s obviously an important question, but it doesn’t feel like a particularly powerful emotional issue for me (we’ll see about that when it’s time to stop, of course).  In practice it will certainly be difficult for Marja and me.  Even though we don’t have a car and can get around Washington quite well with a combination of good public transportation and our bikes, it will still mean that Marja will have to drive those short trips around the city (for which we borrow friends’ cars) and the occasional long trips in rental cars to places we can’t get to by public transportation.  I’ve always done most of the driving; Marja doesn’t enjoy it and becomes anxious and tense while driving, so it will be an adjustment for her.  But we’ll deal with it.

Should I be driving? 

I emailed my neurologist to get advice and he wrote back essentially advising me not to worry about it, yet. 

He wrote that the American Academy of Neurology has published guidelines for auto safety for people with Alzheimer’s (http://www.neurology.org/content/74/16/1316.full.html).  (The following a bit technical but stay with me.) 

There are six useful factors to consider in determining how safe a person is driving.  The most important is the Clinical Dementia Rating scale, which requires a professional neurological exam (but the criteria can be found at http://www.neurology.org/content/74/16/1316/T1.expansion.html)

The other five can supplement the dementia rating:

1.    a caregiver's rating of a patient's driving ability as marginal or unsafe

2.    a history of crashes or traffic citations in the last five years

3.    the patient deliberately reducing driving mileage or avoiding driving in certain situations

4.    a Mini-Mental State Examination score of 24 or less and

5.    aggressive or impulsive personality characteristics. 

As I mentioned above, research indicates that your own rating of your safe driving ability isn’t correlated with the results of an on-road-driving-test. 

(Note: This same webpage says that insurance companies and licensing agents have a demerit point system based only on previous crashes or citations, but I couldn’t find a description of the exact criteria.)

I was a little surprised that the implication on the Academy’s website was that any person who can pass an on-road-driving-test is judged safe, which seems a little loose to me.  I would think that the biggest issue in safe driving would be distractibility, and I doubt a routine driving test would measure that very well.

My neurologist believes my dementia score to be essentially zero, so, according to the criteria, I can still consider myself safe to drive, which fits with my subjective conclusion.  But I know it’s only a matter of time.  Alzheimer’s is a disease of constant losses.  Losing one’s driver’s license is, in our culture, a highly symbolic event.  I only hope I have the grace to accept that loss when it comes.

May 18, 2013

They’re Still In There

Washington DC

Lee Ann Gerleman is a nurse who’s worked for many years in long-term Alzheimer’s care units and has been making frequent comments on this blog.  I’ve collected and (heavily) edited some of them here. 

Through the months, I’ve written about my curiosity about consciousness in moderate stage Alzheimer’s. (For the definitions of the various stages, see http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp.)Lee Ann has responded:    

People with dementia are still just regular people. Their reality, however, seems spread out over time. If you know the patient for a long period of time, you can get the full story. It just seems as if things have gaps between them. And the patients are just as loving and needing of love as anyone else. They soak up love like a sponge. For someone like me caring for patients with dementia, a locked unit in a nursing home is a love place. You can hug more, love more, and it is gratefully reciprocated. So this disease is just a continuing part of the journey.

What so many people don't realize is that even quite demented patients are just the same as the rest of us.  They may be forgetful, but inside their consciousness, down where it really counts, they still have their inner conversations going, just like we all do. 

Lee Ann sent me an email with her thoughts on the subjective experience from within Alzheimer’s.

Some people talk about how it would be such suffering to be lying in bed, incontinent and so on, about how we "might as well just shoot 'em.”  They’re equating a different way of interacting as being a bad way.  But if patients are comfortable and no longer embarrassed by incontinence, they sleep and remember good times and bad.  Maybe their memories are not as deep as ours, but the love and memories are still there.  Like the patient whose great granddaughter comes and walks her around outside.  She doesn't know who that little person is, but she knows she loves that little girl.  That is true happiness, being deeply in the moment with a little girl who is taking very good care of you.  All the little friend wants you to do is smile and be happy.

She continues in commenting upon my post “Why Not Suicide?.”

If we indeed "go backwards" in our cognition, then being the two-year-old child in our minds wouldn't be any worse than being a two-year-old 83 years ago.  There’s wonder in everything around us.  And someone with the cognition of a two-year-old would enjoy things just as much as anyone.  With a two-year-old, of course, there’s joy in watching the child grow and mature.  With an 83-year-old “child,” it’s heartbreaking for family and friends to see their loved one going down and down.  But that 83-year-old lives in the present, and there are things to see and do.  Watching a 3-year-old picking a tomato is no different in awesomeness from watching an 83-year-old pick a tomato with the same amazement.  Someone with AD is just going the wrong way on the highway of life.  But for them, it’s still the same highway.  They experience love, caring, amazement, seeing wonderful things, happiness, just as anyone does.

And then there are the truly amazing events that leave you scratching your head:

One little woman used to steal my nurses notes—all of the little scribblings that a nurse would make to remember things.  She would take my scribblings over to the grand piano, sit down with a flourish and play for hours from my nurses notes as if they were sheets of music.  She never missed a note, played probably four or five different sonatas—Bach, Beethoven, and others.  If I tried to take my papers back, she would get all upset, so I'd let her keep them as long as she played.  When she was done, she’d bring the papers back to me and put them on my cart with a quiet little thank you.

And other surprises are just humorous:

One woman was discussing with me how wonderful her husband, Tom, had been for 65 years, never a mean word, always loving; she looked like a bride, thinking of her loved one.  So ten minutes later, her husband came in to visit and I hoped she was still on the same wonderful bride-journey, so I said, "Tell this man about your wonderful life with Tom.”  She looked at me in shock, and said, "OMG I married him?”  So much for giving him a pat on the back.

Care givers are sometimes understandably bitter about all the patient’s friends disappearing as the disease worsens, abandoning patient and caregiver to the disease.  Lee Ann had a different take.

Alzheimer’s is, after all, “The Long Goodbye.”  When patients initially go into a special care unit, their families are usually very supportive, and come for all of the fun activities, etc.  But about half the families then begin to come less and less, and I think it’s because that as the patient begins to move away more, the family adapts by moving away also.  They are adapting to the changes in the relationship.  Which is good for them.  Family members naturally begin to withdraw somewhat, as they spend more time out in the world.  It’s hard to explain.  They don't love the patient any less, but they learn to change with the times and go out into the world more.

And other times, Lee Ann seems to feel deeply privileged just to be present to the moment.

I sometimes find it very touching to be sitting with an AD patient and their adult child.  Of course, the son or daughter is upset that they aren't being remembered.  But then I ask the patient about her children.  It is amazing to watch the patient glow, talking about her child, the school work, the play, Christmas when he was five, the smiling and obvious love.  The adult children were focused on losing Mom, but when they can see their Mother's obvious love for them, it does help, I think.

In the end, of course, we don’t know the subjective experience of the person with moderate to severe Alzheimer’s.  But, at least for Lee Ann Gerleman, the potential for rich relationship remains.

Thursday, May 16, 2013

Washington DC

Do I Really Have Alzheimer’s? 

When, in conversation with another person about my Alzheimer’s, I mention one of my particularly frustrating symptoms, they’ll often respond with something like, “Yeah, I know what you mean; I’ve been getting a lot more forgetful, too.” 

It drives me nuts. 

Usually, I just let the comment pass, but it most often feels like a dismissal of my diagnosis, as if to say, “Everybody gets like that sometimes; don’t take it so seriously.”  It irritates me, so I list a few of my more abnormal symptoms to shut the person up.  But sometimes they’ll respond to that by saying something like, “Well, you said you’re not 100% sure you have Alzheimer’s, didn’t you?  It could be something else, right?”

Yes, it could be something else.  But it’s not.  I can’t blame my friends; they’re just trying to be optimistic or make me feel better or, perhaps, shield themselves from the fear of the disease.  Or maybe they’re just trying to make sense of the disease, to understand what I’m going through and I’m just being overly sensitive.

As I’ve written before, a definitive diagnosis of Alzheimer’s disease can only be made at autopsy.  In clinical practice, however, the diagnosis is made by testing for dementia using a cognitive function test and then ruling out other causes of that dementia (see my post “Research”).  For some of us with early disease, however, we don’t even meet the official criteria for dementia, which, in practice, usually means a score of less than twenty-five out of thirty questions on the Montreal Cognitive Assessment (MoCA).  Those of us who score between twenty-five and thirty are given the diagnosis of “mild cognitive impairment” (MCI).  If the other causes of dementia have been ruled out, however, MCI virtually always progresses to Alzheimer’s.

So do I always feel absolutely certain?  Well, mostly I do.  My personal neurologist believes my MCI will progress to dementia, as does the research neurologist I’ve asked.  At an intellectual level, I’m convinced this is Alzheimer’s disease.  But am I absolutely, 100% certain?  No.

And that little bit of uncertainty makes this difficult disease even more difficult.  As a doctor, I understand that in medicine almost nothing is certain.  Sometimes we just have to wait and see.  But, even so, the three years since my first symptoms feels like a long period to wait.

Most neurologists, I suspect, don’t mention Alzheimer’s to people with early MCI unless they ask.  At my first visit almost two years ago, my neurologist told me about my score of twenty-seven but—perhaps noting that I hadn’t asked—didn’t specifically mention Alzheimer’s.  That I—a guy who always wants the details—didn’t ask specific questions after missing three questions on the MoCA surprises me.  Perhaps it indicates my own fear of the disease at that time.

I have a lot of confidence in my neurologist, and, when I asked about Alzheimer’s at my visit this past September, he was candid saying that he thought my MCI would progress to Alzheimer’s. 

There’s really no way around this dilemma of uncertainty, but it raises uncomfortable issues for those of us with mild cognitive impairment. We ask ourselves questions like:

• What’s really going on?

• If it’s not Alzheimer’s, what else is it? 

• If I’m not 100% sure, do I inform my friends, anyway (much less go public with a blog and newspaper interviews)? 

• Do I go into all the details of MCI vs Alzheimer’s every time someone questions my diagnosis? 

• Do I take the major steps to reorganize my finances (see Medicaid)? 

• If my job requires a high level of cognitive ability, do I quit now or wait to make a serious mistake or have my boss fire me? 

• Should I apply for disability? 

• Should I get started on my “bucket list”?

• What kind of advance directives should I make?

Obviously, some people would rather not know and deliberately avoid the diagnosis.  Others move into active denial, perhaps never facing their reality.  But for those of us who want to know what’s happening to us, why we’re forgetting so much, why we’ve declined intellectually, the uncertainty can wear us down.

I’d be interested whether others with who are in the early stages of Alzheimer’s find this limbo nerve-wracking.

May 24, 2013

Washington DC

Normal Aging or Alzheimer's?

A number of people have commented here written me directly, asking how to tell the difference between the symptoms of Alzheimer’s and normal aging.  As I wrote in my previous post, “Do I Really Have Alzheimer’s,” it’s not that easy.  There are no foolproof answers.

The Alzheimer’s Association does have a helpful web page laying out ten early signs of Alzheimer’s and how they differ from normal aging.  If you’re wondering whether you have the disease, reading them can be a little frustrating because early in the disease the distinctions are matters of degree and not easy to be sure about.  Nevertheless, they can give us some comfort about normal changes in aging or help us decide when we need to get ourselves checked out.  The following are taken largely from that page but somewhat edited; occasionally I include my own reflections.

Memory Loss

Changes in memory are the most common initial symptoms in Alzheimer’s, but normal aging changes memory, too.  A normal person might forget names or appointments but will usually remember them later on, perhaps with a little prompting.

In early Alzheimer’s, however, memory loss begins to disrupt daily life.  We forget recently learned information and important dates or events.  We may have to ask for the same information and over again and/or rely on notes or electronic devices to remember.

Challenges in Planning or Solving Problems

In normal aging we might make occasional errors when, say, balancing a checkbook or figuring out a tip.  But in mild cognitive impairment, there may be trouble following a familiar recipe or keeping track of monthly bills.  You may have difficulty concentrating or take much longer to do things than you did before.

Difficulty completing familiar tasks at home, at work or at leisure

In normal aging we might need occasional help in using the settings on a microwave or recording a TV show, but in early Alzheimer’s you may find it hard to complete daily tasks, drive to a familiar location, successfully manage a budget at work or remember the rules of a favorite game.

Confusion with time or place

Any older person may get confused about, say, the day of the week or the date, but we can usually figure it out later.  But with Alzheimer’s you may lose track not only of dates but also of seasons or the passage of time in general.  You may sometimes forget where you are or how you got there.

Trouble understanding visual images and spatial relationships

There are some vision problems that are just signs of normal aging, like those related to cataracts or the need for reading glasses.  But for some people, vision problems are a sign of Alzheimer's.  A person may have difficulty reading, judging distance or determining color or contrast, which may cause problems with driving.

New problems with words in speaking and writing

As we age, most of us have occasional trouble finding the right word, but it’s worse in early Alzheimer’s.  You may have trouble following or joining in a conversation; you might find yourself stopping in the middle of a conversation and having no idea how to continue.  You might have to repeat yourself or struggle with vocabulary; you might have problems finding the right word or call things by the wrong name (eg, calling a "watch" a "hand-clock"). 

Misplacing things and losing the ability to retrace steps

Normally, in getting older we may misplace things from time to time, but we can usually retrace our steps to find them.  In Alzheimer’s, however, you may put things in unusual places or lose things and be unable to retrace your steps to find them again, sometimes even suspecting others of taking them (because you can’t believe you just lost it).  Losing things becomes a regular habit. 

Decreased or poor judgment

Anyone makes a bad decision once in a while, and it may happen a little more frequently as we age.  But in Alzheimer’s you may experience regular changes in judgment or decision-making, for example, poor judgment when dealing with money like giving large amounts to telemarketers.  We may pay less attention to grooming or keeping ourselves clean.

Withdrawal from work or social activities

As we get older, anyone can feel weary of work, family, or social obligations.  But people with Alzheimer's may start to remove themselves from hobbies, social activities, work projects or sports.  You may have trouble keeping up with a favorite sports team or remembering how to complete a favorite hobby.  You may also avoid being social because of other changes you’ve experienced. 

Changes in mood and personality

As we age many of us get more rigid, developing very specific ways of doing things and becoming irritable when a routine is disrupted.  But in Alzheimer’s, the mood and personality changes can be more pronounced.  You can become confused, suspicious, depressed, fearful or anxious.  You may be easily upset at home, at work, with friends or in places where you’re out of your comfort zone. 

Unfortunately, none of these is precise; the borders between normal and abnormal are blurry.  Something that might be normal for one person may be a sign of Alzheimer’s for another.  Furthermore, there’s no set number of symptoms that indicates disease.  If we find ourselves in between, it’s hard.  Personally, I wanted to know, but I still found myself waiting even after some changes that should have prompted me.  If you’re seriously wondering whether or not you have Alzheimer’s, my own advice is to see your physician and get a referral to a neurologist.  The worse that can happen is reassurance you’re normal.

Tuesday. May 28, 2013

Washington DC

Preparing Our Hearts

Several comments on this blog have referred to this disease as “the long good-bye,” during which the person with Alzheimer’s gradually moves away toward a land into which friends and family cannot follow. 

As the one with Alzheimer’s who will eventually move away, however, I experience a different sort of long good-bye … from the other side of the relationship, from a much earlier stage in the disease, and with joy rather than sorrow.  I have the privilege to attend my own prolonged memorial service, so to speak, and receive from friends and family their gratitude, admiration and love while I’m still here and can drink it in.  A good friend whom I see now only rarely sent me a long email last week, recounting several periods in our lives together in which my presence had been important to her and her husband, expressing her gratitude for my work with the impoverished and its impact on her life, and affirming the depth of our mutual relationship.  In reading it, I was transported toward one of those “thin places” between our material world and the world of spirit and mystery. 

Her email was especially beautiful, but others have written to express similar feelings and to reaffirm their sense of our belonging together over many miles and many years. 

Strangers have written to describe the impact of my writings on their lives.  Physicians who read my first book, Healing the Wounds, about the emotional and spiritual contradictions of doctoring have written me about how deeply the book shaped their careers.  Some are twenty-five years into their practice and have read of my Alzheimer’s, which has impelled them to write; others are college students in pre-med wondering if medicine is their calling. 

Similar emails arrive regarding my other books, some of my writings, even speeches I gave at their medical school.  Thirty years ago I wrote an article for The Other Side magazine about my depression and how it cast its black shadow over my search for God.  After all these years, people have written to thank me for it.  

These are the kinds of things we could tell each other any time, any day as we live our usual lives, but most of us don’t; it’s almost taboo … at least among men.  I don’t think I speak only for myself when I say that we can go for years of deep relationship with another person without ever articulating our gratitude for who we are together, for our love for one another.  So often we wait until the person is close to death—or, more often, perhaps, until that memorial service—before we dare articulate these beautifully human feelings of love and connection.  

The taboo seems to extend to the one on the receiving end, too.  Prior to my diagnosis, I was well defended, good at protective humility, at deflecting, at denying, or escaping these embarrassing moments of praise, or admiration, or love. 

This long good-bye of Alzheimer’s, however, seems to weaken the taboo on both sides, evoking those expressions of closeness from others while I am still very much here and permitting me to allow the gratitude, admiration, and love to wash over me.  My heart seems to have grown.  I can listen gracefully.  It is part of the wonder and joy of these months since my diagnosis.

In some ways I’m now in the best of both worlds: not much intellectual diminishment; yet lots more emotional openness.  I’m very aware that profound intellectual loss will come later, but I wonder if this long good-bye is preparing us for those later times.  I wonder if this period allows the softening of hearts—mine and those of friends and family—so that when I can no longer respond to their words or even understand them, when I don’t even know who they are, our hearts will then be prepared to love without concepts. 

There is a mystery here, for which I am very grateful.

Wednesday, May 29, 2013

Washington DC

A Delicate Dance

This past Memorial Day, our faith community spent the weekend at a camp in rural Pennsylvania.  It was just a time of play with virtually no program: unscheduled hiking, laying in the sun, watching a movie, playing board games, swimming (in pretty cold water) and so on.  What I noticed during the weekend was how seldom my cognitive impairment was even an issue.  I still refer to it, usually obliquely, when I get a little confused or lose yet one more thing, but I was surprised and pleased over the weekend to notice that my community is now quite comfortable with my diagnosis.  There’s no need to belabor it.

The progression of my Alzheimer’s has been slow.  Although I’ve certainly noticed some worsening over the eight months since my diagnosis, it hasn’t even reached the point where other people notice unless they’re looking for it.  The reality is gradually settling in for me that I have a lot of life left that will not be significantly impaired by disease. 

The first months after my diagnosis, the emotional impact of having Alzheimer’s disease was so powerful for me that it became the primary focus of my life.  It tended to overwhelm other parts of me and became almost my identity.  I suspect that period of identifying myself as an Alzheimer’s patient was important to me in order to accept my diagnosis, and the powerful emotional responses of family and friends seemed to encourage that focus, so I don’t regret it.  Once I became public with this blog and other media coverage (among which were an article in the Washington Post and a segment on the CBS Morning Show), my role as a professional Alzheimer’s patient and informal spokesperson for the disease further cemented my identity as a person with cognitive impairment, a special case deserving of special attention.

But as with diabetes or heart disease or even cancer, it’s not an identity; Alzheimer’s is one of those things that happens in real life.

It’s  true that Alzheimer’s is a little different from other serious chronic diseases in that it’s still a taboo subject that needs to be brought out of the closet.  Our cultural fear of the diagnosis makes it more difficult for family, friends and others to see it as normal, as not so different from any other ultimately fatal disease.  But, of course, it is normal!  If almost fifty percent of 85-year-olds have Alzheimer’s, then we’re not talking about something abnormal.

Over the weekend, my primary identity wasn’t an Alzheimer’s patient but a member of my community enjoying the countryside and each other.  I then returned from the weekend to a comment on my post “Normal Aging or Alzheimer’s?” by a reader, a.b.w.  “Beware of the trap of self-indulgence,” she wrote.  It reminded me not to take myself and my illness too seriously, not to get caught up in a special identity.  (That’s a little harder for me since I’ve taken on this vocational role in order to bring attention to the disease and its taboo.  But the danger of self-indulgence is clear.) 

It’s important, however, to acknowledge that having a name (a “label”) for my impairment (as compared to wondering what the hell is going on) has been comforting to me.  It’s given me some sense of the future and allowed me to make necessary plans.  Also, my “coming out” to friends and acquaintances has made it easier for them and me to get past my diagnosis.  We hardly mentioned it this weekend.

Nevertheless, a.b.w.’s warning against self-indulgence is well put.  For me that temptation comes in the form of allowing the name to define me.  I do have cognitive impairment, yet my self is far more than that.  It’s a careful dance.

June 2013 Posts

Jump to my blog

Blog Posts from April 2013

Monday, April 1, 2013

Napa CA

Helplessness

I'm on the train home from visiting my daughter and her family in Napa, CA.  Friday I decided to walk the family dog and join my grandchildren at the nearby park.  The dog sometimes slips out of her collar and needs a simple harness to keep her on-leash.  But after at least ten minutes of confusion, trying unsuccessfully to figure out how to put the harness on, I had to settle for the collar, stuff the harness in my pocket and, after I'd reached the park, ask my 8-year-old granddaughter Madeline to put the harness on.

This would not have happened five years ago.  Although my neurologist is virtually certain I have Alzheimer’s, he tells me that I'm very early in the disease and that, in the average case, I would not yet have come to medical attention because no one else would have noticed or been concerned enough to push me toward help.  But I know that something is wrong: I can't think as well.  The confusion around the dog harness is only a minor thing, of course, but my previous IQ was high enough and my capacity to recognize spatial relationships strong enough to keep this sort of thing from happening.  If it had, I'd have been pretty embarrassed.

What surprises me is that such little episodes of helplessness don't cause me much frustration or embarrassment anymore.  I was the bookkeeper for our little church; in December I made a $24,000 mistake in figuring out next year's anticipated income (ok, that's not a little episode), which created some havoc in the community.  I recognize the seriousness of the mistake (and I've therefore given up the task), but I feel no shame or humiliation.

This would not have been normal emotional behavior for me.  Before my diagnosis, I took such pride in my ability to do such things that a mistake like that would have devastated me emotionally.  But it's different now.

Before my diagnosis with this disease, I rarely even contemplated the possibility of Alzheimer’s, and, when I did, the thought of this helplessness terrified me.  Especially in our country, it seems to me, feeling helpless is not culturally acceptable and frequently occasions shame.  We disparage the “learned helplessness” of the poor, for instance, as almost the worst of all sins and blame for their own poverty.  Our native optimism convinces us that people aren't really helpless: There's always some way out, and it's their job to figure it out. 

Some time ago, a student in a class of nursing students to whom I was speaking challenged me.  “Aren't you accepting your limitations too easily; you don’t seem to fight against them .  If you fought it a bit more, maybe your symptoms would be less intense.”  Left unsaid was, "You're not as helpless as you think."

We do sometimes make exceptions for those with unavoidable and obvious mental disability such as mental retardation, traumatic brain injury from war, post-traumatic stress disorder (but notice how long it took us to recognize both of the latter diagnoses) … or Alzheimer disease.  And even then, we're not comfortable around those people.  Helplessness is embarrassing.

I've been through this before: I suffered from a severe depression for decades before I realized the cause was an organic brain disease.  During that period, I was ashamed of my inability to enjoy life; I considered a character defect that I should have been able to overcome.  After I understood that the cause of my depression was an unavoidable chemical imbalance in my brain, however, the shame disappeared.  I was still helpless, but I didn't have to "try harder" to get over it.

It's the same thing now.  I'm not embarrassed when I can't remember ever meeting a person with whom I had a long conversation recently.  I'm not frustrated when I can't fix a simple problem with my file drawers.  My helplessness is unavoidable.  I am not going to get better no matter what I do; my capacities will decline further.  This is not my fault.

So I don't fight my inabilities.  I can accept this part of myself as real.  The sadness continues but not so much the pain of helplessness. 

Perhaps part of my symptoms are just my apathy and it would be better to fight more.  But even if that were true, fighting my plight has its problems, too: more frustration and tension, less ability to talk so openly about my disease, less c apacity to notice the fine differences in my condition, and so on.  I fought my depression vigorously and ultimately it made me feel worse.

Furthermore, I’ve discovered a vocation in this sharing my experience wherever I can, and I can't tell the story if I don't accept the realities of Alzheimer’s.  I’m old enough to understand my limitations, my helplessness in these situations.  It may be that someone else who fought their disease would do better; I doubt it, but in my experience, at least, it’s been more important to be completely straightforward with my limitations.  Acceptance has its own rewards, and I value them highly.

Friday, April 5, 2013

Washington DC

What Happened to My Fears

Things have been crazy since I got back from my California trip!!  There have been almost 50,000 page views on the site, over 70 comments, one interview from CBS This Morning, requests for six radio interviews, and lots of emails.  It’s been overwhelming but it’s an exciting confirmation of the importance of bringing Alzheimer’s out of the closet. 

In response to some of the emails and comments, this post and the next will be about the cultural fear of Alzheimer’s.  Curiously, I’m not afraid of this disease, but why not?  What is it, exactly, that I should be afraidof? 

What was I afraid of before I knew my diagnosis?  It’s hard even to remember.  I don’t think I ever put it into words.  So let me imagine what I would have been afraid of a year ago.

Helplessness and dependency: I’ve always been independent and can take care of myself.  It would be awful to have to depend upon another person to tend to my needs.  I would hate imposing on them—especially Marja—unfairly, becoming a burden. I don’t want to be helpless.

Loss of intellectual capacity: What I’ve done in my life has been dependent on my intelligence and intellect.  To exaggerate a little, I’ve always been the smartest guy in the room.  Who would I be if I lost most of my intelligence?  How would I spend my time, if I couldn’t use the computer, couldn’t write, couldn’t even read?  Everything that gives me joy would be gone.  What would I actually do?

Embarrassment: How would I survive the embarrassment of diminishing memory and intelligence?  It would be terrible to forget a friend’s name or to repeat myself over and over because I couldn’t remember what I said five minutes ago.

Rage: What if I became one of those people who flies into a rage at the drop of a hat, who yells obscenities, who causes pain to others?

Isolation: How would I tolerate the isolation?  People would react the way I’ve usually reacted to people with diminished intellectual capacity, with the embarrassment, even the shame that Alzheimer’s carries.  They wouldn’t know what to say.  And so they’d abandon me and I’d be alone.

What would it be like to be incontinent of feces? to have to be wiped after every bowel movement into my diapers?  How could I tolerate that?

What would it be like to lie there in a nursing home unable to carry on a conversation, unable to relate to anyone, unable to remember who anyone is?

So I was afraid then.  Why am I not afraid now?  I’m not completely sure but:

• Before I would have feared that even this first level of symptoms would be painful, but instead it’s been rewarding and positive.  What does that say about the rest of my fears?
• My fear was based on my assumptions as a non-demented person thinking how awful it would be.  But I now realize that because of the stigma and silence that surround the disease, I didn’t actually know what the experience of a demented person was.  (I'll write more about that in the next post).
• If I examine closely each of my fears, what exactly am I afraid of?  Isolation is really the only one I fear.  The rest of it would be embarrassing or unpleasant, but I’m not afraid of them? 
• I’ve had no embarrassment in telling others and the response of people close to me has been overwhelmingly positive.  My worst fear—of isolation—has been put to rest.
• It seems to me quite possible that as things become worse, my dementia itself will change my reaction to what’s happening.  With increasing cognitive impairment, I may not find my symptoms as painful as I feared.  Obviously I can’t be sure about that now but, given my experience so far, it seems to me quite possible.

So for me at this point, there is no fear.  But I want to read more comments about the inner experience of Alzheimer’s.  If you have Alzheimer’s what’s your inner experience?  If you don’t have Alzheimer’s but have asked people with the diagnosis about their subjective experience, tell me what you’ve heard.  And finally I’d like to hear from people who don’t have dementia but are afraid of it: What are the specific reasons you’re afraid? 

So far I’ve received lots emails and comments from people with positive experiences with the disease.  I’ve been surprised that I haven’t heard from more people who have experienced the disease from the inside who think I’m naïve, who are saying to themselves, “Just you wait!  Tell me in 3 years that it’s not so bad.”  So help me out with your comments.

The next post will be about why the fear is so strong in the culture.  How do most others perceive the disease and how does that contribute to their fear?  I have some ideas.

Sunday April 7, 2013

Washington DC

Why Might We  Fear

Several people responding to the Washington Post article last Sunday have expressed their deep fear of having Alzheimer’s.  In his comment to my post "Adventure," Richard Fox bluntly asks why more people don't commit suicide after learning their diagnosis.     

Where does the fear come from?

Most of the sources of fear that I can think of don’t come directly from the experience of people with Alzheimer’s at all but from those looking on from the outside. 

Our fears may come from the images of Alzheimer’s in popular culture, which are almost exclusively of advanced disease: The patient has bursts of anger and paranoia; she wanders aimlessly and can't even recognize members of her own family; he lies mute and helpless in a nursing home bed. 

Our fears may come from our observation of severely demented people, staring blankly into our faces, embarrassing us as we don’t really know what to say.

Our fears may come from the stories of exhausted caregivers who have been traumatized not only by the terrible emotional and physical stress of caring for utterly helpless invalids but also by the gradual loss of comfort and support from the one they have loved and depended upon for decades.  These sources tell us of deep suffering on the part of the caregiver but may not say  much about the actual experience of the demented one being cared for.

None of these sources asks the patient directly what it's like to be in his or her mind. And, due to the fear, embarrassment, and shame that surround the disease, no one with Alzheimer’s is going to volunteer their stories, either.  So we know little about the experience of the disease at all.

We know little about the stages of the disease (many of which are not so scary). 

• Early on, at my stage, no one notices the subtle symptoms and most people aren't going to volunteer anything, either, so we don't hear about early Alzheimer’s.    
• As things get worse and memory deteriorates, people learn to hide their disability by faking normalcy (often quite well) or avoiding interactions completely, so we don't know that part. 
• At a more severe stage, the person with Alzheimer’s may stay (or be kept) out of sight even though she is still able to contribute. 
• And after still further decline when the patient’s memory has gone, it may be very difficult for the patient to be in public despite her capacity for meaningful interaction with others. 

The end result is that our fears rarely come directly from the experience of an actual patient but from our imagination, an imagination that has had little real contact with Alzheimer’s.  What could be more terrible, we imagine, than forgetting the name of a person you know well; repeating the same thing you just said five minutes ago and five minutes before that; standing there mute and unable to join the general conversation; or vegetating in that nursing home bed?  But those are our projections now (as people without dementia) of how we would feel if we were demented.  But since we aren't demented, we don't actually know what we would experience or how we would feel.  Perhaps we have a distorted picture of the experience of Alzheimer disease.

Here are some counter-examples that do show each of these stages but the images are far different from what we’d expect.

• I am myself early in the course of the disease and I can still write a blog of my experiences and find my way downtown to go bike-riding to the library with my grandchildren.
• One delightful movie Friends With Benefits provides images of a later stage of the disease.  The father is indeed sometimes confused, but not always, and he ends up playing an important and positive role in his son's life.
• Joy (Joy at Joseph’s House) is a significantly demented woman not really able to interact socially with others, yet she brings meaning and happiness when she visits our hospice.
• Years ago I saw a documentary in which a daughter and demented mother were dancing joyfully around the room.  The daughter later explained that her mother and she had had a terrible relationship most of their lives.  Now her mother had forgotten those difficult times (indeed, had forgotten who her daughter even was), and for the first time they could enjoy each other.

Many of the comments in this blog and emails that I’m now receiving write of relationships with people in much more advanced stages, in which companionship, love, humor, closer relationships, and deeper meaning have become possible because of the Alzheimer’s (see, for examples, Lee An Gerleman’s comment after my last post or Tim R’s comment after “State of Consciousness.”)  Several people have told me of reconciliation with estranged parents as old hurts are forgotten and both people stay completely in the present. 

In fact, we don’t know what our experiences of this disease might be.

Tuesday, April 9, 2013

Washington DC

Trying Not to Be a Success

The Washington Post carried a significant article on me on Easter Sunday and its web homepage.  Since then this blog has received well over 50,000 page views (compared with a daily average of 80 before that.)  I'm overwhelmed.  The blog is still getting over 2,000 page views a day and 420 people have signed up to receive each post in their email.  For now, the blog is "successful."  As I result, I notice myself worrying about how to keep the “readership.” 

But trying to make the blog “successful” carries an unacceptable risk.

As I wrote last month, "The concern that I have is that all the editing [I do] will result in my censoring in order to prioritize 'interesting' and 'well-written' material over the raw experience from inside the world of Alzheimer’s."  In the face of 50,000 page views, I can feel that temptation very strongly to write more carefully to make it "worth it" to those of you who read it. I’m a writer, and this temptation is powerful.

I’ll do my best to resist.  I thought briefly I could partially solve the problem by just typing spontaneously in my journal and then, when I write the post, go back and show you what I've changed.  (As you can see from the following paragraph in which I’ve tried, that doesn’t work.  It’s not only unreadable, of course; but doesn’t show much of anything about Alzheimer’s: Strikethroughs are deletions and I've capitalized typos within the strikethroughs.)

I will do my best to resist that temptation refuse that temptation at least in my hjournal from which this post my these posts are written.  Already this morning I've noticed this morning Even now I'm carful as I compose this journalmyself going back and correcting as I type.  THIS IS A PARA The problem is that I've always ediGted my work.  and as you can see from this paragraph in which i've stricknI'm TYP Part of this is just correcting typos and grammar (before this disease, I was a good typist) but part of it isW making sure it sounds right to you.  Aand i'm ging going to continue correcting the typos a  and  the problem is that my paragraphs  The One solution would be to show you each time I correct a tptypo, fix, edit the grammar, or go back and write things nbetter.  As you can see from this parapgraph in which I'cve tried to do that, the post would be utterly unreadable. 

I've always edited my work as I go.  I’ve always corrected typos and grammar, editing for content and style as well as developing my thoughts as I write.  Again, this is what all writers do.

It turns out that as I was in the middle of writing this post, David L Smith left a very thoughtful comment on my “State of Consciousness" post.  He points out that the purpose of this blog is to show what this disease is like from inside my own mind, but any editing I might do creates

a coherence of thought and elegance of prose of someone who doesn't have [Alzheimer’s], and that will mislead your readers into thinking the disease is more benign than it really is.

It's an important issue, but the consequences for me at this point in the disease are pretty benign.  I have Alzheimer’s and I still have a “coherence of thought and eloquence of prose” (such as it is).  I’m not giving that up; it will be taken from me soon enough. 

My task in this blog is to show how Alzheimer’s appears from inside my head.  The shame and embarrassment that keep Alzheimer’s in the closet do great harm. Since the image too many people have of Alzheimer’s is a person wandering around, getting lost and speaking nonsense or lying mute in a nursing home bed, it's important to show that in the early stages of the disease, symptoms are quite mild and there are often years of incremental, almost unnoticeable decline in functioning that the public rarely recognizes because the diagnosis is so rarely public.  (See the previous post “What Happened to My Fears?”) 

If I were consciously to dumb myself down (which I won’t), it wouldn’t really show you anything except a good writer dumbing himself down. 

The much more difficult question is the unconscious censoring that is inevitable.  To retain your trust, I will do my best to show you who I am through my uncensored writing, warts and all? I will be as rigorously careful as I can not to aim for success.

Ultimately, as I said in that earlier post, the issue is integrity.

Thursday, April 11, 2013

Washington DC

Confusion

At this early stage in my disease, I sometimes feel embarrassed describing my symptoms.  They feel so prosaic.  I can’t mention a particular symptom without someone (often my wife Marja) saying, “I know what you mean; I have just the same thing.”  What I want to say in return is, “Well, no … you don’t.”  Usually, however, I hold my tongue.

The deficits I notice in my cognitive functioning are sometimes major, like getting lost or misestimating the church budget by $24,000, but more often they’re losing things or being slow on the computer or just plain confusion.  The confusion isn’t necessarily obvious to anyone else, but I can feel myself getting lost in a process.

This morning, for instance, I got really confused just writing in my journal.  A single page took me an hour and a half to write (without even going back much to edit).  Ordinarily it would have taken me twenty minutes or less.  But this morning I made several typos perhaps every line.  I constantly left out words or phrases that I’d intended to write but didn’t.  I’d go back to fix it and would shortly thereafter noticed that the way I fixed it was wrong, too.  Sometimes it took me several minutes to finally fix a misplaced word or phrase.  

I was sure that at one place in that journal entry, I’d written four bullet points onto the page.  A few seconds later, though, I looked up and there were only three bullet points.  I could have sworn there were four; apparently I’d gotten confused between deciding to write something and actually doing it.  What I can’t describe very well is the sense of confusion, like living in a fog, not quite connecting with the world about me. 

A couple of days ago, I wanted to insert some of the stories I’d written a few days earlier into the blogs I was currently writing.  Because my memory is now so poor, I needed to make sure I hadn’t used those stories in previous posts.  It meant reviewing a couple days worth of posts on the blog, several stories I was currently working on and several stories that were in my journal but not yet used. 

I keep the journal, the working files and the posted files in three different folders.  As I went back and forth between the three folders trying to compare the stories, I kept getting lost between the folders, getting confused about what I was trying to do, reading some files over and over and not reading others at all.  There were only six or eight stories among eight or so short files, but I couldn’t remember which story was where.  A ten-minute job took me at least half an hour.  What was most difficult for me, again, was this sense of being lost in a familiar area.  Why can’t I do this?

Another confusion: Some of the radio interviews scheduled for the coming weeks asked for Marja’s participation, too.  When I’d written down the interviews on my calendar, however, I’d forgotten to indicate whether Marja had been invited.  Only when Marja asked to which she should come did I realize I needed to keep track of it.  So I went back and found the emails containing the requests; in one case I had to call the interviewer.  Now I have to remember to write it down with future requests.  It seems a little thing … and perhaps it is.  But the little things build up.

And knowing that my cognitive functioning is impaired can create doubt about my thinking, for instance, did I lose my coat on the train coming back from Napa or was it stolen?

Nowadays, I lose things pretty often, for example, my sunglasses while in Napa or misplace things many times a day, so it no longer bothers me so much.  But if I actually lost my coat (as opposed to having it taken), I’ve reached a much worse level of impairment than I was aware of.  I remember taking the coat off the overhead rack exactly once on the trip, during a rest stop when it was drizzling.  I specifically remember putting it back in its place, slightly damp.  Then it was gone.

I searched for it everywhere, asked the conductors and at lost-and-found.  So if I had lost it, it wasn’t in the train, which meant that I would have had to have taken it outside, taken it off, set it down, and left it there when I got up.  I don’t remember doing anything like that.  To lose something by misplacing it is one thing, but to have taken all those steps and not remember any of them is quite another.

I’d like to believe it was stolen.  But it was an old coat, valuable only to an indigent person without a coat, and those folks don’t usually travel by train.  More importantly, I’ve been on many 3-day Amtrak trips across the country and I’ve never even heard of any theft of any kind, despite the fact that computers, luggage, and other things are commonly left in plain view. Things just don’t get stolen on Amtrak.

It’s not so much the value of the coat that bothers me; I’ll get a new one from Value Village.  It’s not that I don’t know this sort of thing will eventually be happening a lot.  What bothers me is the uncertainty, the not knowing where I’m at.  Did I blot the whole thing out?  If I’m that far gone, what kind of precautions should I be taking?  Should I be traveling alone?  Should I be driving? Perhaps losing the coat shouldn’t matter, but it matters to me!  How far along am I?

April 15, 2013

Why Not Suicide?

Washington DC

I’ve been surprised that the question of suicide has come up only once in this blog’s comments, even after the two recent posts on fear (here and here).  As I write there, I think that for me life will retain too much meaning to want to leave it early.  But given the attitude of most people towards Alzheimer’s, why don’t more choose suicide?

Certainly many think about it.  On seeing an Alzheimer’s patient (or any other person) lying terminally ill and comatose in a nursing home bed, almost everyone thinks, “I don’t want to die like that!”  Others will feel the same when a person can’t remember family or wanders babbling.  But when they gets to that point, they rarely suicide.  Why not? 

For some, of course, the first and overriding issue is that suicide is morally wrong and can’t be considered. 

Second, while people might want to commit suicide “before I get that bad,” very few people will choose suicide while their lives still retain meaning.  Some people might choose to kill themselves while they’re suffering greatly, but the prospect of future suffering is not enough of a motive.  If life is worth living now, we hang on to it.  We are, after all, attached to life.

Third, many people with Alzheimer’s lose their ability to suicide before they’re ready to go through with it.  The novel Still Alice depicts an intellectual college professor with early-onset Alzheimer’s who decides she’ll suicide when it gets “too bad.”  She places into the medicine chest a bottle of pills strong enough to kill her and writes herself a note with exact instructions on when and how to use the pills.  As she gradually declines, she gradually loses the capacity to remember or figure out what she meant.  Ultimately, she wonders who this person is who is trying to kill her by writing this note to her.

Fourth, the experience of the person with Alzheimer’s may not be as bad as we—who are looking in from the outside—think it would be.  When we get there, we may find no reason to suicide.  As unimpaired people or as people earlier in the disease, we project how we will feel in the future but, in fact, we have little idea what our experience will be then.  In the Comments section of this blog and in emails to me, I’ve read beautiful stories about the happiness of patients with very advanced disease.  Maybe most of them aren’t suffering much at all.

Finally, one values life differently as one gets sicker.  I worked for many years in a home and hospice for homeless men with AIDS.  Most of them were admitted when their symptoms were relatively mild; they’d see other patients about to die and vow to overdose before they got “that bad.”  As far as I know, none ever did or even tried to.  As we approach the end, to have a “meaningful life” requires less and less.

Human beings generally value their lives deeply.  We may think that when we reach such-and-such a condition, our lives will lose that value.  But, apparently, that’s very seldom true.  My understanding is that the suicide rate for people with Alzheimer’s is low.  I’m not surprised.

For my own part, I think I’ll be just too curious about what the future holds to consider walking out.

Thursday, April 18, 2013

Washington DC

Crazy-making

Monday was my first day in a Georgetown Hospital research study of a drug so new it has no name, only numbers.  It’s a double-blind study so neither the local research team nor I will know whether I’m getting the real drug or a placebo (25% chance).  The drug is an antibody that is supposed to attack and dissolve the amyloid that gums up the synapses between the neurons in Alzheimer’s.  The drug’s real effectiveness may not be so much in treatment of symptomatic disease like mine but more in very early Alzheimer’s, that is, decades before symptoms arise.  It might even prevent Alzheimer’s if give early enough.  And there’s the possibility that this study could even lead to a vaccine that confers life-long immunity to the disease!  But that’s probably long after I’m dead. 

Today was only the first day of five or six weeks of testing to see whether I even qualify for the study; but it’s already stirring things up for me emotionally.  I suspect I’ll be writing a few posts over the next months as the study continues.

The emotional impact today came from the preliminary cognitive testing.  The study is looking at the effectiveness of the drug in “mild” cognitive impairment.  If your score is too low (too much cognitive impairment) or if it’s too high (too close to normal), then you’ll be excluded from the study. 

What astonished me was that my results were so close to normal that I barely qualified for the study.  I was stunned!  I have lost so much of my thinking compared to several years ago, yet it barely registered on the tests.  When I asked the nurse about it, she acknowledged that there were problems with testing “highly intelligent people” (her words not mine) who apparently have a “cognitive reserve” that allows for normal results on the usual screening test even in the presence of significant impairment and disease.

The testing had two parts.  The first was a basic screening test used in neurologists’ office to indicate whether there’s any level of impairment at all.  Because the study is double-blind, I don’t know the exact results (except that I barely qualified for the study).  I believe I had a perfect score on the first test.  The second one was more sensitive than the first and meant specifically for the memory loss of Alzheimer’s.  My memory for the objects I had to remember was indeed terrible, and I’m sure that test made my score bad enough to qualify … yet I almost did too well, anyway.  If I’m right that I had a perfect score on that first test, then I could have gone into a neurologist’s office with my current level of impairment, been given the appropriate screening test, and told there was no objective indication that anything was wrong. 

It would have been utterly crazy-making!  I know I’m significantly impaired.  Getting lost, being unable to figure out spreadsheets (that I myself created several years ago), or making a $24,000 error in bookkeeping are not simply little exaggerations or deficits everyone has.  If I were told nothing in was wrong, I would fear that I was imagining things, which would have frightened and isolated me. 

So how could I be almost too normal to qualify for the study?  Isn’t there something wrong with testing if it can’t recognize my level of impairment?  Perhaps finding very mild impairment in “highly intelligent” people is more difficult, but it can’t be impossible.  To avoid such crazy-making, it seems necessary to try.

On the other hand, the tests did, in the end, pick up definite cognitive impairment.  With all the publicity and the number of people hitting this blog, my wife Marja has been concerned that I’d gotten too far out front with the public attention.  “What if you don’t have Alzheimer’s?” she said  How embarrassing would that be?!!”  But the research center tests confirm the diagnosis.  Marja is much relieved.

April 23, 2013

Washington DC

A Spectrum of Disease

My symptoms rise and fall in no distinguishable pattern.  Some days are good days; some days are worse. At this point in my disease, I have really no reason to complain.  As far as I can tell, I’m still intellectually intact and enjoy good conversations.  Last week I spoke about my Alzheimer’s to a group of people training to be hospice chaplains.  I talked for about twenty minutes, sharing a bit of my previous history, what it’s been like since I noticed symptoms and where I am now.  After that I led a discussion that went well.  Yesterday I read my spiritual autobiography to our small faith community and again led an energetic discussion filled with personal sharing on all sides.  In some ways, then, I feel completely unimpaired.

The constant difficulty at this point is losing things … all the time.  It’s not that they stay lost for very long; they’re usually hiding in plain sight.  At Sunday’s church service, I couldn’t find my backpack; I asked around and nobody had seen it.  I searched around the (small) room for three or four minutes and finally found it in an absolutely obvious place.  It was not, however, a place where I usually leave the pack nor did finding it jog my mind of having put it there.  Shortly thereafter, a friend asked why I didn’t have my glasses on; I hadn’t noticed they were gone.  I nearly panicked, thinking I might have left them before church at a coffee shop.  I was about to run over when I noticed the glasses lying on the table next to which I’d been sitting.  I rarely remove my glasses outside our house and never without a specific reason.  I have no memory of taking them off or even why I might have taken them off. 

These are tiny things.  They happen to everybody.  But they are happening to me many, many times a day.  Several times day, I will roam through the apartment, looking for my jacket, my backpack, my beltpack, or my slippers.  Such little episodes are less frustrating than they might be because I am conscious of my Alzheimer’s and expect things like this to happen.  I’m more curious than anything else.  Having shared my diagnosis with people close to me, I’m not embarrassed when I have to ask them for the third time whether they’ve seen my notebook.

The more frustrating difficulty is the decreasing inability to synthesize bits of information from various sources.  Sometimes it’s quite simple stuff like stories from several computer files (see “Confusion”); other times it’s listening to reports in a meeting and not being able to pull everything together.  Most days it doesn’t come up, but it’s frustrating when it does.  Usually, though, I can just remind myself: “You have Alzheimer’s, David.  What do you expect?  Usually, I can let it go.

Monday morning I biked downtown to a reception of the Alzheimer’s Association Advocacy Forum that is meeting here in Washington to lobby for better funding for research.  I attended one of their sessions.  Some of the speakers had Alzheimer’s and some didn’t.  Unless they mentioned their diagnosis, however, I couldn’t tell which was which.  Yet our predominant cultural image of Alzheimer’s is the old woman babbling in the corner or the man lying almost comatose in the nursing home bed. 

In fact, those of us with Alzheimer’s range across a wide spectrum of symptoms.  There are a lot of us out here with early-stage disease who are still actively living our lives.  Unless I die earlier from something else, I will live for many years with this disease.  Right now, I have memory loss that seems significant to me, but you wouldn’t notice it unless I mentioned it or you were paying strict attention.  I still teach and engage in deep conversation.  Later, I expect I’ll have more significant memory loss but will still be able function meaningfully in my family and community.  Still later on, I may be quite disoriented yet still live with and contribute positively to those around me.  And later I will move toward those disturbing cultural images that bother us.  (Even then, I’ve been told by caregivers, I may be able to have real relationships with those who care for me.)

The general public would be a lot less scared of this disease if more of us with mild impairment “outed” ourselves as having Alzheimer’s and talked openly about it.

Thursday, April 25, 2013

Washington DC

My IQ does not measure my worth.

Martti, my Finnish father-in-law, suffered from dementia—not from Alzheimer’s but as a result of a series of small strokes, each of which chipped away step-wise at his mental abilities.  He had been a highly respected math professor at a teacher’s college.  He was a reserved man, committed to propriety, yet he also loved the tango and would occasionally roll up the rug to dance in the living room with his daughter, my wife Marja. 

Finnish men and women of his generation were expected to make formal speeches at special occasions, and Martti prided himself on being able to speak well.  As his 80^th birthday approached, however, he was increasingly aware of his decline, yet he knew he would be expected to speak at the gathering in his honor.  He was uncharacteristically anxious and asked Marja to listen to his speech to reassure him it was appropriate. 

In that 80^th birthday speech, Martti said, “I have had seventy-nine good years; the last year has not been so good anymore.”  He was very aware of his cognitive impairment and much pained by it.  Shortly after that, he told his family he wanted people to remember him as he had been rather than as he was now.  In his last years he saw very few people outside the immediate family.  

Martti did not reach an advanced stage of the disease before he died; he always knew who we were and could basically take care of himself.  At one point in his disease, he said to Marja, “I used to be the head of this family but now I can’t do anything.”  It wasn’t a complaint, just a statement of fact.  While he bore it without self-pity, Martti suffered from his dementia.

 

Before my diagnosis with Alzheimer’s, I thought I would feel the same way my father-in-law did, wanting people to remember me as I was at the height of my powers and not as I would become as a result of my dementia.  My greatest fear was that I would lose that which I treasured the most: my intelligence and my independence.  To some extent I still feel that way: Perhaps my greatest sadness is that my grandchildren will likely know me mostly as a doddering old man. 

Surprisingly, though, that fear of intellectual loss has diminished greatly; my attachment to what I used to be is decreasing.  It’s becoming obvious that such attachment to who I used to be at a particular time in my life only leads to unhappiness.  This is true even if we don’t have Alzheimer’s disease.  When I was in my thirties and forties, for instance, my self-image included being a good athlete: agile, strong, and able to run or cross-country ski for hours.  As my body aged and I was no longer so agile or strong, I found myself sometimes depressed because I no longer fit my image of myself.  It was a while until I recognized that hanging on to that athletic self-image was not a recipe for happiness or contentment for a man who was, in fact, going to get older.

Similarly, attachment to my IQ is not going to bring much happiness as the Alzheimer’s slowly but methodically clogs up my brain.

Buddhist teachings remind us that there is no constant “self.”  (See my “Letting Go of Self.”)  The Western idea that our self stays the same throughout our life just isn’t very accurate.  In fact, our self changes continuously and dramatically throughout our life.  The Buddhist teachings point out that clinging to any particular self-image is sure to bring suffering because the self will not fit the desired image forever.  Let it go!

It may be harder for those of us who have prized our intelligence and seen it as the highest value.  What else would there be, after all, if our intelligence faltered?  How would our life have value?  Those thoughts just reveal our arrogance, our prejudice against those with low IQs.  We fear becoming those who we have not valued very highly.

But I am beginning to see that—in addition to the losses—there may be another kind of joy available as my mental powers decline.  I’m reminded of parents and caregivers of the mentally retarded who talk frequently about the joy they find in the relationship with those whose intellect is deeply impaired.  Feelings are more available; relationships are more immediate; the person is valued, not so much for what he can do but for who he is.  Perhaps it’s the quality of our hearts and not the number of our IQ that matters more.

I’m still early in the disease and haven’t yet lost too many of my intellectual abilities.  At this early stage, it would be naïve for me to insist that I’ll live up to my words above.  Maybe my equanimity in the face of this illness will collapse and I’ll suffer like Martti did.  I can, however, see the possibility of just letting this particular self go.  So far, I haven’t clung to the capacities that have already slipped away, and I can foresee accepting the next steps as just part of my journey, too.  I won’t have to try to be the brightest bulb in the room, anymore.  Been there, done that!  Now is the time for a new part of my journey.  Perhaps that is my future.

I wonder about Martti.  Could he have suffered less if he hadn’t been so attached to his previous self?  Would he have been so unhappy if he knew that his value and his worth did not depend on his IQ?  I’d like to think so.

April 29, 2013

Love & Jealousy; Community & Isolation

Washington DC

My wife Marja and I were at a silent retreat with others from our faith community this past weekend.  We entered the Great Silence after Friday dinner and remained silent until after Sunday morning worship.  We slept at the Inn where each of us had a separate, simple room with a bed, desk, chair and sink.  We had meals and met together in the Lodge, a separate building that has an almost sixty-year history of continual silent retreat.  It is a place that invites one into silence.

I’ve meditated almost daily for at least fifteen years and have found quiet only in the midst of very long retreats, never in my daily meditation.  With the diagnosis of Alzheimer’s, I had hoped (illogically, I suppose) that the slowing of my thinking would make my mind simpler and quieter, my meditation deeper.  No such luck!  As my mental abilities have decreased, it’s been just as noisy in there as ever.  I had a small hope that over the weekend of retreat, I’d find a bit of inner silence, but all I experienced was the “monkey-mind” of constant chatter.

But there was something else both more beautiful and scarier.

I was sitting in the Lodge looking out the floor-to-ceiling windows just before evening worship when Marja walked down the path through the woods from her room.  I was suddenly aware of deep longing.  She radiated an inner light.  Lean and strong, she walked gracefully as if she belonged to those woods and that path.  She smiled easily at several of our friends.  In those few moments, the fullness of her inner beauty was revealed to me in a way I’d never felt in over fifty years of our relationship.  In that moment I felt extraordinarily grateful that we belonged to one another.

But then the future broke in.  As I watched her exchange glances with some others, I felt strangely excluded from those relationships.  Suddenly, it was five or ten years down the road, and Marja had relationships with others that I was incapable of sharing or even understanding.  I felt immediately jealous: I wasn’t able offer her what she needed and she had to look elsewhere.  It was as if she were having an affair.  In that moment, I felt jealous of any other relationship.

Although they became muted, the feelings stayed with me as Marja sat across the room during the short worship that evening.  Afterwards, I went outside into the dusk, and sat on the steps overlooking the meadow and woods.  As Marja came out the door, I caught her eye and she sat next to me.  We clasped all four hands together.  Feeling our bodies touch, holding one another, I was comforted and felt safe again.

The jealousy was “real,” even if the imaginings that prompted it were not.  I “know better” than to live in the future like that.  But that’s where I lived for those moments of jealousy.  I was fearful of what the future might bring.  Feelings of isolation are what I fear the most and what, I suspect, many with Alzheimer’s suffer greatly from.  And jealousy has the potential to isolate me from the one with whom I share so much, who will be there with me forever.

Everything that happened in those few minutes bordered on the mysterious.  Part of me feels very grateful for the emotional openness that has occurred as my illness has progressed.  Part of me is scared.  Those feelings, both sublime and painful, would not have been possible for me two years ago.

In the end, of course, it’s precisely this living in the future that causes so much of the pain of Alzheimer’s.  I’ve not been falling for it much, but I sure did this time.

 

Click for May 2013 Posts

Jump to my blog

Blog Posts From March 2013

Friday, March 1, 2013

Washington DC

Public Vulnerability

A reporter and photographer visited yesterday.  They are considering a substantial article in a local paper about my Alzheimer’s, with the possibility of following me through the remaining years of my disease.  Several years ago they spent a lot of time at Joseph’s House, the home and hospice for homeless men and women that we founded twenty-three years ago.  And, although I only vaguely remember our interactions, they wrote sensitively about the house in a long article accompanied by beautiful, grace-filled pictures.  So I trust them not to take advantage of me.  (For all the ways the media are savaged for breaking trust and writing sensationally, they’ve never treated me that way in almost thirty years of occasional interviews.)

They stayed for two hours.  I must admit it was wonderful to be the center of attention, especially of two attractive, intelligent and gracious women.  We enjoyed ourselves, and I felt I got to know them well.  In fact, I talked so freely and we laughed so much that I wondered if my volubility was indication of a growing loss of judgment.  I do want to let as many people as possible know what it’s like to experience this disease.  On the other hand, I don’t want to make a spectacle of myself.

I’ve had a lot of experience with public vulnerability.  When I made a serious medical mistake over thirty years ago, I wrote about it in the best medical journal in the country.  The article was then picked up by Harper’s magazine and became probably the single most important writing of my career, eventually helping to break the profession’s taboo against public discussion of our mistakes.  (For a long time, in fact, I was primarily known within the medical community as “that doctor who made those mistakes.”)  Another example is my referring frequently to my depression in my writing, speaking and teaching; it led many people to share with me their own experience with depression, grateful to hear the subject talked about publicly.

In both cases, people had cautioned me about the inappropriateness of my openness, but, in retrospect, that public vulnerability has been perhaps my most significant contribution to our society.

Truth be told, however, I’ve been enjoying myself and my interactions with people so much since my diagnosis in September that I’m not willing to let that question of inappropriateness spoil the fun.  Being open is a good thing to do, and I don’t trust the naysayers. 

And if my judgment does become so impaired that I can’t distinguish appropriate from inappropriate, then I trust my circle of friends and family to help me figure it out.  So, at this point I don’t care.  This has been too much fun!

Monday, March 4, 2013

Washington DC

Emotional Openness

I find myself enjoying this increasing emotional openness that seems to be part of my Alzheimer disease.

Saturday night, Marja and I went to the Kennedy Center to see a play presented by a Finnish troupe in Finnish (with subtitles) as part of a month-long Nordic Festival.  Marja is from Finland and the long periods of time our family has spent there have given me a real sense of connection to the place and to the culture.  The setting of the drama is under a bridge somewhere in Finland where a number of homeless people are camped.  An extended family there decides to put on a Christmas pageant in gratitude for some distant relatives who live nearby who have allowed them to use their shower.  So the climax of the play begins with the homely pageant, introduced by a reading of Jesus’ birth from the Gospel of Luke.  That reading is part of any Christmas celebration there.  It is beautiful in Finnish and full of emotional richness for me, a symbol of my happiness there, I suppose.  This time the reading began abruptly, and I wasn’t expecting it.  Immediately as the character began to recite it, however, a profound sense of longing overcame me.  I choked up with tears of gratitude.   

Then Sunday morning in our little church community, we had a wonderful service.  Every part of it from prayers of gratitude to prayers of confession, to our (always prolonged) sharing of the peace gave me deepening awareness of my belonging.  The music was energetic and rich.  Our teacher for the morning was a professor on sabbatical who’s been part of our community for only seven months.  One aspect of her teaching was a recounting the richness of our community and its importance for her spiritual journey.  One of the events she recounted was my acknowledging my Alzheimer’s and the community’s welcoming my vulnerability with obvious caring.  Another person prayed for Marja and me.  There was a powerful sense of community. 

In our church we offer each other communion.  When the time came, Marja was right in back of me in line, so, after I’d taken communion, served by the person in front of me, I turned to offer the bread to Marja.  I choked up so much that it took me, perhaps, a full minute to get the words out, “This is the body of Jesus broken for you.”  Each time, I was overcome each time by tears of joy, of gratitude, and of connection. 

(I thought it was pretty funny, however, when Marja and I talked about it later over supper.  She had thought I was crying because I was frustrated from not being able to remember the words.  Oh, well, so much for soulful communication between the marital partners brought close by this terrible disease.)

For my entire life until now, I’ve been particularly unemotional, due, I believe, to clinical depression.  I felt few emotions, and crying during communion was certainly not normal behavior for me.  Perhaps it’s the loosening of inhibitions that’s common to Alzheimer’s.  Whatever is causing it, it feels rich. 

I’ve always been intellectually aware of the profound privilege of my life: I was given a sharp intellect; I’m in good physical shape; Marja’s and my relationship is wonderful; my children are doing well; I’ve always had meaningful work for which I’ve been well compensated and  appreciated; I have a supportive community; we have no financial problems, and on and on and on.  So I’ve always known how good I had it but have never experienced the gratitude that our good fortune would usually evoke.  Perhaps my happiness and contentment over the past months have not been so much new as old, never-before-experienced feelings of joy and contentment.  Perhaps this Alzheimer’s is allowing me to enjoy my life for the first time, not because things are any better, but because I’m more emotionally in touch with the goodness.

I feel rooted, grounded.  I’m where I’m supposed to be.  I’m not looking for something else, something better.  And this gift comes through my disease.

March 6, 2013

Washington DC

This is a guest post from Patty Wudel, Executive Director at Joseph’s House, the home and hospice for formerly homeless people with AIDS where I worked for many years.

David wrote last week about a recent Joseph’s House staff meeting where he shared his experience with Alzheimer’s disease and about Joy, who was there that day and is in her seventh year with Alzheimer’s. 

Joy and her partner Grace normally volunteer at Joseph’s House on Tuesday mornings, arriving early enough to join the silence that begins our weekly staff meeting.  Along with our other volunteers and staff, they sit in deep quiet as each “finds a place of rest in the middle of things.”  When the bell sounds to end the silence, Grace heads for the kitchen to prepare the hearty lunch she’ll serve after our meeting.

Joy usually stays with the rest of us for the meeting.  She used to keep Grace company in the kitchen, but often she became restless and would wander in and out of the room during our meeting.  Her restlessness was distracting for everyone. 

Several Tuesdays ago, Helen, our 86-year-old community elder, shifted into Grace’s chair when the meditation ended and extended her hand to Joy, who took it.  That day Joy stayed for the whole meeting with Helen beside her.  Since then Joy has remained with the rest of us for our staff meeting while Grace cooks in the kitchen.  Joy listens intently when someone speaks and responds to the emotional tone of voice, especially if the speaker is seated close to her.  Sometimes she chuckles or raises her eyebrows, punctuating what is being said.  Other times she asks a question.  If what is being shared brings tears to the speaker, Joy will cry a little also.  Our staff and volunteers take all this in stride easily and kindly.

Right now Joy’s presence at our staff meetings feels effortless.  Actually, because we so much love to have both Grace and Joy at Joseph’s House, our community is simply doing everything we can so they can both be with us.  It’s good, and it’s not really difficult at all.  It feels natural.

Friday, March 8, 2013

Washington DC

Why Not Try This?

A good friend was quite excited to tell me about new research being done in which certain brain exercises can actually re-wire the brain.  He gave me a book on the topic, which, out of deference to him, I will at least look at.  His thought, of course, is that I should get involved.  “It’s only an hour or two a day,” he said.

But I’m not inclined to spend much time evaluating the treatment, even though I have heard that it might be effective in the case of certain types of stroke.  To re-wire a brain in which specific neurons have been knocked out while leaving all others untouched—as happens in a stroke—seems to me quite different from rewiring a brain with Alzheimer’s generalized damage.

But my reaction certainly begs the questions: Why not?  What can I lose?  Why not try everything?  My reluctance seems strange even to me. 

Perhaps it’s just apathy, a well-known symptom of Alzheimer’s.  But there are more objective reasons for my hesitation, too. 

First, deciding to do one thing means deciding, if only passively, not to do others things.  One or two hours a day of brain exercises is a significant diversion from living the limited time I have left. 

Second, this research is in its very early phases with no actual evidence of effectiveness in Alzheimer’s.  So the chance of this approach having a positive effect is tiny.  There are many such untested treatments out there. Already in my emails I’ve had at least three others suggested to me, each one with its small chance of success.  Why not try this one, or that one, or the one over here?

But it’s more.  Spending time and energy trying to fix myself seems to me like a form of denial of my disease and its terrible future. 

I’ve been in this position before.  During my public teaching or lecturing or writing, I’ve often referred briefly to my depression .  It’s a way of bringing depression out of the shadows and reducing the stigma that sticks to it.  Almost invariably after such a lecture, someone would come up and suggest a “new treatment” that usually seemed at least reasonable and was purported by someone to be effective; there were dozens of them.  Each person, I’m sure, meant well but behind their “suggestions” I felt the implicit challenge: How could you not do absolutely everything possible to treat this disease?

When I was practicing as a rural physician, I had a patient, Peter, a man with Multiple Sclerosis (MS).  At the time there was no effective treatment for the disease.  Peter would come in every month or so having heard about or read about a new treatment that he wanted me to facilitate.  In medicine the number of “possible” treatments is inversely proportional to the effectiveness of accepted treatments: If there are a hundred treatment options out there, you can be pretty sure that none of them is effective.   I had no confidence at all in these new treatments for MS, but I wasn’t about to interfere unnecessarily with Peter’s path of hope.  But as I watched him chase one mirage after another, I wondered whether he could ever come to peace with his illness.

Might not one of these new treatments for Alzheimer’s actually work?  Of course.  But which one and with what likelihood?  I prefer accepting my future and dealing with it as best I can.  I could see that following these leads could bring mostly frustration and tension, inability to talk so openly about my disease, decreased ability to notice the fine differences in my condition, and less time enjoying the newly emotional and loving connections I’m making with family and friends.

I have a particular vocation around this disease: to share with others my experience of it in order to reduce the fear it produces, puncture the stigma, point out the positive sides, help others to accept their disease and reduce their isolation.  And part of what that means is to accept what’s happening, pay attention to it and chronicle it.  Others will choose to fight the disease; more power to them; perhaps they will find an effective treatment; perhaps trying it out will further our knowledge.  But I know that this is my path, which may very well not be right for others.  Certainly many people will judge my decision as crazy.  I could come to regret it, too.  But after living with myself these past decades, I know that I must recognize my limitations and not struggle against them. 

I fear this post will make no sense to anyone.  But I’m clear about what I’m doing.

Monday, March 11, 2013

In the Chicago Amtrak station

Hyperbole?

I offered what we call a “teaching” at our Eighth Day church on Sunday.  The subject was my Alzheimer’s and my “theological learning” over the past five months.  As with so many experiences I’ve had with other people since September, this was a wonderful sharing that felt rich and beautiful, deepening the bonds of community.  I posted the teaching on both the Eighth Day site and my own, and (as I usually do with my writings) sent it out to my mailing list of over 300.  Within hours a torrent of emails began to flood my Inbox.  This suggests not only support for me but also the hunger people have to learn about this disease.  It’s well-matched by my desire to write and teach.

As I review the sermon, however, I see I’m using the terms “beautiful,” “wonderful,” “rich,” “gift” so often that it begins to feel like a soap advertisement out to convince myself and others about the wonder of the product.  Reviewing my posts over the last several months, I get the same feeling.  At an intellectual level I understand what the future has in store for me: It’s not pretty.  And my friends and old readers will know that I’m hardly a Pollyanna: My usual response is to dwell much more in dark side of things than the light.  Indeed, this experience of joy over the past five month is unique, as great a surprise to me as it may be to those who know me well.  But the richness and beauty are so real that I can hardly write about it without using these overused terms that smack of hyperbole or, worse, just trying to put a pretty face on suffering.  I do sometimes wonder whether these current feelings aren’t some kind of euphoria that will eventually reveal itself as just another way of coping with feelings of fear, anxiety, depression, etc.  Given some of the emotional pain I’ve suffered several times in my life, however, I know that denial is not my style. 

Perhaps what sometimes seems like hyperbole is just the loosening of inhibitions that goes with this disease. 

At this point I don’t know.  Wherever this joy comes from, it’s real, and it’s part of what it has meant for me to live within the reality of my Alzheimer’s disease.  And I’m grateful.

And, as I’ve written before for a writer everything is material.

Tuesday, March 12,2013

Washington DC

State of Consciousness

I’m curious about what will happen to my state of consciousness as I enter more deeply into this disease.  At present that consciousness feels no different from any other time in my life.  Toward the end, however, I’ll be lying in a bed apparently unconscious.  But will I be unconscious?  If I am conscious then, what is that experience?  If I’m not conscious then, what are the gradual changes in consciousness that will happen between now and then? 

On the Saturday before the Oscars, Marja and I went downtown for a showing of the five films that were nominated as the best “short films.”  A French film, Henry, made a deep impression on me.  From the beginning, the film felt confused, almost surreal.  It flipped back and forth in time and was full of strangers who kept acting as if they knew Henry, the main character.   But they kidnapped him, forcibly injected him with drugs, and kept him helpless in restraints.  He met earlier versions of himself and of his wife. 

It was all very bizarre until, over half-way through the film, I finally tumbled to the fact that Henry was demented, and the film was showing his world from his point of view, his own experience of the world.  Mostly he was in his own demented world, but his sense of himself didn’t seem to change as he passed back and forth.  As far as Henry could tell, he was the same person whichever state he was in. 

Of course, this was only a film, and Henry’s sense of himself was only fiction.  But how does the inner state actually change as the disease progresses​?

An older friend once told me of and event shortly before her husband died with Alzheimer’s.  He had been completely out of it, intellectually unresponsive for a long time.  My friend visited her husband at the nursing home and during the middle of her visit, his dull eyes seemed unexpectedly to find their focus, and he began a normal conversation that lasted some minutes.  He seemed lucid and in those few moments they re-kindled their emotional bond.  He was cognitively present to her.

What happened?  Presumably we’ll someday be able to describe physically what happens in the brain to bring about such wild swings.  But what was his experience?  Was he conscious of himself during their conversation?  Was he in some way conscious of himself when he was out of it?  What changed as he went into his wife’s world and then out of it again?

In Henry’s fiction world there was no real change in his sense of consciousness as he moved between the two worlds.  Is that what happens?

Several people have said that emotional presence is one of the last lights to go out as the disease progresses.  The experience of the staff at Joseph’s House is that there moments when Joy, the woman afflicted with Alzheimer’s (“Grace and Joy”) is still sometimes emotionally present.  What is her experience in those moments?

How little we know about this disease.  50% of people eighty-five years and older have Alzheimer’s yet we know almost nothing about what the experience is like.

I was surprised that the movie didn’t frighten me.  Henry’s experiences seemed mostly “interesting.”  But it did help me to realize how little I know of what’s coming, how naïve this blog may later seem.  And Henry’s experiences and those of his care givers—along with the questions that the film raised in me—strengthened my determination to bring a bit more light to this disease.

Thursday, March 14, 2013

Washington DC

Vulnerability (2)

Patty Wudel, the executive director for Joseph’s House, the home and hospice for formerly homeless people, recently wrote here about the role that Joy, a volunteer with Alzheimer’s, plays in the house.

Patty has also told me the story of a Mr Bumbridge who was a resident at Joseph’s House a number of years ago.  Although he’d been employed all his life, he had never found a place of belonging and had been completely disconnected from family.   Then he’d developed  cancer and was on his way home to Philadelphia by bus.  By the time he reached the Washington Greyhound station, however, he was too sick to continue and Travelers Aid called Joseph’s House.

Patty remembers Mr Bumbridge as a tiny, jockey-sized man.  He was a good conversationalist, a much appreciated gift at Joseph’s House.  At dinner he would often sit between the same two, much larger, much more muscular men, bantering and joning¹ with them.  As Mr Bumbridge deteriorated and became too sick to come down to dinner, however, these two younger residents at Joseph's House would go up to his room, coax him out, and carry him downstairs to the big Joseph’s House dinner table.  Whether one can eat or not, dinner at Joseph’s House is a central place of connection and community.  Even when he was unable to eat, Mr Bumbridge continued to offer his gift of conversation.  Even after Mr Bumbridge became so feeble that he couldn’t take part in the conversation or even sit up at the table, but these two big, formerly homeless men with AIDS still went upstairs and carried Mr Bumbridge down to include him in the community.  Patty has an image of the three of them, Mr Bumbridge unable to hold himself up and leaning against one of his younger friends, who had his arm around him.  Even in his helplessness and weakness, Mr Bumbridge helped to create community.

I’ve been thinking a lot more since my previous two posts (here and here) about helplessness and vulnerability as compared to strength.  The power of vulnerability is something I’ve believed, intellectually, to be an important Christian insight, but I’ve never really internalized it emotionally as truth that I could rely on in my life.  But in Joy and in Mr Bumbridge we find two people, each bringing the community together through their helplessness.  

I’m not helpless, yet, but it’s my vulnerability, not my strength, that has awakened compassion and intensified the community around me.  And it’s awakened other people to their own vulnerability, too.  In my previous condition of emotional strength, I couldn’t have played such a role. 

When we compare vulnerability to strength, we too often can’t see the importance of vulnerability because we’re measuring both against what strength can do.  But that’s the wrong metric and misses completely the power of powerlessness.  Weakness has its own gifts, the value of which is measured on a different scale from strength.

These stories encourage me.  Joy is quite far along in her dementia and is really “out of it” from the usual societal point of view.  Yet—in her humor and sensitive emotional radar—she is still contributes to the community.  She’s included and helped to feel useful, not only because she needs it but also because in her helplessness she binds the community more tightly together.  Mr Bumbridge, too, offered his gifts. 

It’s a reciprocal relationship.  When the Joseph’s House community can welcome and include them in their helplessness, their gifts bind the community more tightly together.  It gives me hope that as I can do less and less for others, my helplessness can offer strength to a community, too.

Friday, March 15, 2013

Washington DC

Apathy … or Common Sense

Recently, I reneged on my commitment to co-teach a course at the Servant Leadership School, the “street seminary” of our Church of the Saviour community.  I’ve taught there regularly for years.  The content of one particular course that I consider important has, however, been difficult for me to present, frustrating, and anxiety provoking.  A friend had suggested we teach it together, and I thought he might well make up for my deficiencies.  But, although the first class is still four weeks away, I’m already fearful, realizing that I won't be able to pull together even the part of the course I’d agreed to take on without feeling anxious for the next three months of my life. 

Ordinarily the thought of reneging on such a commitment would have provoked guilt and embarrassment.  But I’m different now.  Given the amount of clear-thinking time I have left, I’m not willing to spend so much of it in needless anxiety.  In addition, my limitations mean I’m less likely to teach it well.  My friend, I’m sure, is disappointed; I am, too.  But both of us know I’m limited now. 

This disease is always thought of as a tragedy.  And I suppose it is, especially for those who have to observe and even more so for caregivers.  But I wonder how much the Alzheimer’s patients themselves suffer.  At my stage in the disease, of course, it’s all just speculation, but so far the disabilities—confusion, uncertainty around teaching, and especially loss of memory—aren’t causing real suffering.   I’m sometimes frustrated, of course, until I recognize that it’s the disease that’s caused me to forget such-and-such.  But then I just let it go and the frustration dissolves.  Perhaps the apathy that accompanies Alzheimer’s blunts my motivation to care so much.  Regardless, I don’t compare my current incapacity to my former capacity and, to the extent that I don’t compare, I don't suffer.

So hop ahead several months or several years and you see me sitting on a bench just staring or responding inappropriately to your attempts to talk with me.  Certainly it would be painful for you, especially if you knew me well, but would it be painful for me?  It seems quite possible that the very losses I will experience will make me cognitively less capable of recognizing them or caring about them. (See “Out of the Frying Pan Into the Freezer.)

For now, it’s all just speculation.  I hope I’ll still be able to communicate some of the discoveries as the lights go out.

Sunday, March 17, 2013

Washington DC

Denial and Such

This is a guest post from my wife Marja Hilfiker.

Most of the time, I have been in denial of some sort or another.

True, David lost his belt pack twice on the same trip to see the grandchildren.  The first time it was returned by strangers, minus the cash. The second time it just seemed to evaporate.  A few months later, while we were on a backpacking trip, I salvaged his new belt pack from an outhouse, which I just happened to visit before we continued our hike.  When I first told our daughter Karin about David’s cognitive impairment, she said, “Yeah, Dad seems a little weaker every time I see him.” Last fall, David suddenly had a rash of missed appointments and meetings, but some extra precautions brought those problems generally under control.

Otherwise, many of the symptoms David complains about seem all too familiar.  Can’t remember names.  Same here.  Can’t find words.  Me too.  Typing has gotten terrible.  So what else is new?  Aren’t we just getting older in tandem?  We are senior citizens after all.  We should be grateful we are still ambulatory. Unless, of course, I have Alzheimer’s as well.  In one test of cognitive functioning, we both got a perfect score, so who is going first?

I didn’t go to David’s appointment with his neurologist, but our recollections of what David had reported from that appointment have varied enough for us to argue about them.  I clearly recall that the doctor had said, “I have a hunch that you may be moving toward dementia.” That seemed drastic enough to me, but now David insists that he never used the word “hunch” but diagnosed progressive cognitive impairment that was likely to be Alzheimer’s disease.  However, it was later verified that the medical record did not include the word Alzheimer’s.

The denial definitely cushions the blow.  I have never felt shocked or terrified or overcome by grief. We always thought that this would be the worst possible way to go, but the reality is sinking in very gently. Or is it reality?  After David made what I thought was a premature announcement of his condition, he got so much loving attention from the community, including The Washington Post, that I started worrying that he does not have Alzheimer’s. 

The good part of it is that whatever it is, we’re in it together. Out of the ruts of our parallel lives, we reach toward each other more in affectionate gestures or offers to spend time together. Since last fall we have enjoyed some remarkable free concerts, and I even made an effort to find David a birthday present.  All that in addition to our evening walks, hand in hand, down Columbia Road seems to have taken on a sense of urgency.

Tuesday, March 19, 2013

Seattle WA

No Regrets

I’m visiting my son Kai in Seattle, and for the past three days I’ve been watching him referee soccer games.  From the time Kai was six and on through high school, I watched almost every one of the hundreds of soccer games he played, but I’ve never seen him ref.  It’s been a real treat!

I’ve always been interested in how a referee handles the game, especially the fouls about which there’s some disagreement from a player or coach.  So I’ve watched with interest and been impressed with my son.  Never having played soccer, however, I don’t notice the fine points of the game very well; I don’t see as, for instance, Kai does.  I often can’t tell whether there’s been a foul or not.  This has always been true for me, even when I watched Kai’s games twenty-five years ago.

But over the weekend, I’ve been startled by my inability to remember what just happened on the field.  Even when I do sometimes recognize the foul that’s just happened, within seconds I can remember almost nothing of the specifics.  If a player were to ask how he fouled the opposing player, I would have no idea.  I’d remember that a foul happened but not how it happened or why I thought it was a foul.  The immediate memory is just gone.  It’s spooky.

Kai and I went out for pizza last night and talked quite a bit about my Alzheimer’s.  He said that if he had Alzheimer’s he would have lots of regrets about not being able to do all the things that he’d planned to do with the rest of his life.  He wondered whether the cause of my lack of regret or resentment results is just that, at sixty-eight, I’m twice as old as he is, or whether there was some special reason I seem so at peace.    

So I tried to tell him.  I’ve written about some of this several times before, for instance in my sermon a couple of weeks ago and in posts about being able to live in the present or being more open emotionally.  But perhaps the most important factor is that I don’t have any significant regrets about how I’ve lived my life.  I’ve been privileged to be able to do pretty much what I’ve wanted to do. 

Unlike most people, Marja and I never really had to worry about money.  When we were younger, we lived frugally, not out of necessity but because it seemed a better, more wholesome life.  We’ve had very little need for what passes for luxury in our culture.  That financial freedom and security allowed us to follow our true vocations and take time to do the other important things, too.  Physicians ordinarily have high salaries, so I could work wherever I wanted to (in my case with the poor), take a low salary for a physician and still make enough.  (Far more constraining for me has been not knowing what I wanted to do.)  But the end result is that I have no bucket list.    

So when I discovered I had Alzheimer’s, I could look back at my life without regret that I didn’t choose to do this or dare to do that.  Marja and I have had a good life.  And far from preventing me from doing things, so far this disease and its process have given me a richer life.  I now have a well-defined call and a fulfilling vocation (writing and speaking about this illness).  Sure, I’m younger than I hoped I would be when I contracted my last disease.  Certainly I would like to live longer, see my grandchildren grow up.  But we all have to die, and I’ve been given much more than most people. 

And now I’ve been given this adventure!

This has been a good weekend with Kai.  Our future together is now limited and both of us want to use it well.  There’s been no pressure to have “meaningful conversations,” but we’ve both wanted to be vulnerable and open ourselves up to the other in ways never possible before.  I feel very grateful.

Wednesday, March 20, 2013      

On the train from Seattle WA to Napa CA

Spontaneity vs Clarity

As I write these posts about Alzheimer disease, I’m becoming increasingly aware of how much my disease affects my ability to write well.  Recently I reviewed several posts I’d already published here and found some confusion.  (I would quote it here except that I corrected it on the spot and now can’t remember even what the post was about, much less the difference between the corrected and uncorrected versions.)  I notice a tension between wanting to be a good writer and wanting to write as a patient who’s declining with Alzheimer’s.  On the one hand, I want my writing to be as clear and easy to understand as possible … as I’m sure my readers want, too.  On the other hand, to the extent that I rewrite and polish, I’m losing some of the immediacy of my experience within this illness.  The tension can’t be completely resolved, but this blog is to be a journey through Alzheimer’s and I will err on the side of reflecting what it’s like to live within these confines, confusion and all. 

Perhaps it’s important to tell you of my process in writing, so that you know what you’re getting.  This is not a raw journal.  I do try to journal every day and then select whatever seems appropriate for these postings.  I then email it my close friend Carol Marsh, who is also a blogger and writes on Chronic Pain and Spirituality.  Although she does some editing for clarity, I most need her help in two areas: First, since my memory is deteriorating, I ask her to keep me from duplicating something I’ve recently written; and second, I want her to check that what I’m writing actually makes sense to a reader.  (As my dementia progresses, we will have to figure out how to present to the reader the writing that doesn’t make much sense in a way that is nevertheless meaningful … which may prove tough to figure out).  Carol then emails her corrections and suggestions back to me.  I read through and make other editing changes and then post it both here and on my blog.

So these are edited posts and not as spontaneous as they might seem. And the date of posting is at least a day or two and as much as a week after my initial journal entry.  The concern that I have is that all the editing will result in my censoring in order to prioritize “interesting” and “well-written” material over the raw experience from inside the world of Alzheimer’s.  In my journal I do write spontaneously and try to mirror my actual experience without editing.  As a writer, I’ve always edited continuously, looking for the best writing I could create. But now I have to balance that with what it’s actually like to be in this intermittent confusion.

I also worry that this becomes too much a stream of consciousness that’s interesting only to myself.  And since my judgment will be increasingly compromised, it will be hard to make those decisions.  So I’m trying to find my way through several contradictory tensions.

Ultimately, what’s most important, I suppose, is integrity.  I will write about what’s significant to me and try not worry about where that leaves me in the eyes of my readers. 

After reading this, Carol sent me the following quote from James Agee in Now Let Us Praise Famous Men:

And if there are questions in my mind how to undertake this communication, and there are many, I must let the least of them be, whether I am boring you, or whether I am taking too long...If I bore you, that is that. If I am clumsy, that may indicate partly the difficulty of my subject, and the seriousness with which I am trying to take what hold I can of it...I am interested to speak as carefully and as near truly as I am able.

Sunday, March 24, 2013

Napa CA

Grandchildren

I’m in the midst of a 3½ week trip west to visit my children, Kai and Laurel in Seattle WA and Napa CA, respectively; I arrived in Napa last Thursday.  After my grandchildren returned home from school, I had a chance to talk with them about my Alzheimer’s.

When we were here at Christmas, I didn’t talk with them because I was under the mistaken impression that Laurel was going to wait until my symptoms were more noticeable before telling them about my diagnosis.  In fact, after our October conversation in which I revealed my diagnosis to Laurel, she began crying.  Eight-year-old Madeline noticed, so Laurel told her and 10-year-old Otto that their grandfather would have increasing trouble with memory.  Madeline’s two questions were, “Will grandpa forget how to eat?” and “Will he forget how to talk?” Laurel answered, “We’ll have to see.”

So I wanted to talk with them a little about it.  I asked them whether they knew about my “memory problem.”  They said that they did, but they didn’t follow up with any questions, so I didn’t press any further.  

The children haven’t related to me any differently.  When I mentioned something that happened to me in childhood, Madeline—always energetic and inquisitive—asked me why I could remember something from so far back.  I told her that most of my loss of memory was for things that happened recently, and she seemed satisfied with that.  When I’ve had to ask them about things I’ve forgotten, they’ve just answered simply without remarking.  I’ve found their matter-of-fact attitude quite refreshing.  I feel no sense of embarrassment: This is just one of those things that happen.

Madeline and I were playing Rummicub, a game with tiles and some of the features of the card game rummy; the purpose of the game is to play all your tiles, leaving none.  Otto, quieter and more cerebral, was hovering over each of us, “helping” by pointing out our best moves.  Toward the end of the game, I had three tiles left and could see only an obvious move that used one of my tiles.  But Otto quickly rearranged the tiles around to show me a complex move that used all my tiles.  Not only had I not seen the possibility of the move, but—even after he showed it to me and then returned the tiles in their previous position—I could not duplicate what he’d just done.  I asked him to show me a second time, but I still couldn’t follow it.  Only after he’d showed me for the third time could I remember the steps long enough to duplicate it!  He seemed more pleased with himself than bothered by my disabillity.

True, the move was somewhat complicated, but seeing possibilities within chaos has always been my strength.  I wouldn’t have been able to imagine requiring three demonstrations to understand it. 

There were two different cognitive losses involved.  First, I couldn’t see the move ahead of time, which is, I think,  the loss the ability to hold several things in my mind at once and, therefore, not see the abstract implications of an action.  Second, the memory loss (that I’m getting used to): I wasn’t able to remember what Otto had just showed me.  Like my inability to remember what had just happened in a soccer game with Kai in Seattle (here), my immediate memory is very impaired.

Again, however, the kids seem to accept it as just the way it is.  They’ll say something like, “That’s your memory, right,” and life goes on. 

I’ve felt no embarrassment with them at all; in fact, we feel more bonded.

Tuesday, March 26, 2013                                                                  

Napa CA

Adventure

As a child I mourned the loss of frontiers.  It seemed to me that there were no adventures into the completely unknown left, nothing where you met challenges never before encountered.  During my career as a physician and especially during my fifteen years at Joseph’s House (our hospice for the homeless), however, I began to recognize the last stages of death as a true adventure into the unknown, a frontier that never disappeared.  It’s not that no one has ever died before, of course, but no one has returned to give us a map, so in our own dying each of us enters into the unknown.

Alzheimer’s, too, is an adventure, the last stages of which are shrouded in mystery, and each of us with this disease will explore an unknown wilderness.  There are lots of people who’ve gone this way before, of course.  Of the 40 million US residents over age 65, almost 5 million have Alzheimer’s.  And although I write this blog to dispel some of the mystery, ultimately neither will I be able to tell others what the last stages are like.  In a recent post I wondered whether I’ll be conscious toward the end when I appear to be completely out of it and, if not, what it will be like.  We don’t know.  

My using the word “adventure” to describe my journey into the darkness might seem like a form of semantic denial, soft-peddling the likelihood of future suffering for me and people close to me.  I don’t believe I’m in denial, but even if I were, does that change the reality that this process will be an adventure? 

Perhaps we don’t think of Alzheimer’s as an adventure because we want happy endings and believe that the word “adventure” applies only to successful adventures, where the hero faces enormous dangers and suffering but eventually returns to tell the exciting story.  But what if the hero does not return from the mountain; or does, but without having reached the top; or does reach the top and returns, but emotionally scarred or physically damaged?   Was it any less an adventure? 

 I’m grateful that I can still sense an excitement.  Growing up, I felt cheated of uncharted territory.  But each of us with this disease must explore it for the first time; each of us faces a unique adventure.

Monday, March 25, 2013

Napa CA

Why Don't I Read My Friends' Blogs?

Shortly after I began this blog, I received an email from a fellow writer, Ellen Painter Dollar, a woman I knew almost two decades ago at Potter’s House when we attended church there together.  Ellen has osteogenesis imperfecta (OI) or “brittle bone disease,” a genetic disorder in which bones break easily.  In addition to the normal pain and disability of broken bones, OI also leads to bone deformities if some of the multiple breaks  don't heal properly.  Despite the fact that there was 50% chance that any child would have the disease, Ellen and her husband Daniel decided to have children.  Their first child was born with the disease; the second two were not.

Ellen has written a book[1] about her journey.  Her blog,Parenthood, Disability, Ethics, and the Crooked Way of Grace explores disability in the context of parenthood, spirituality, and ethics.  I’ve known about her blog for some time but have never looked at it.  And when she emailed me several months ago, I responded with only a short note.  Then, a few days ago, Ellen wrote me again to re-establish contact.  After this second email, I find myself feeling guilty for never having responded to the first or even checked out her blog.

It's not the first time.  My good friend, Carol Marsh, who’s been of immeasurable help to me with these posts, also has her own blog, Chronic Pain and Spirituality that has been born of her chronic debilitating migraine headaches.  I have only skimmed it briefly two or three times.

My lack of interest is embarrassing.  Why would I not be interested in the experiences of two friends who are also writing out of their severe disabilities?  I've felt a vague sense of guilt, even a little shame,[2] although I know that neither Ellen nor Carol has any expectations.  Perhaps it's just the apathy that is typically part Alzheimer’s, but I think there's more.  I suspect I didn’t look at their blogs before my diagnosis because I didn’t really want to look at such undeserved disability, the same way many people don't want to look at Alzheimer’s.  I also didn't want to feel obligated to respond meaningfully to them.  I never thought about it consciously; I even intended to return Ellen's email with a more meaningful response and to look at Carol's blog some day. 

But, now, even my own diagnosis has not prodded me to examine their writings. 

Why  have I continued to ignore the writings of my two friends, even when I know how important it is to me that others that share my situation?  Part of it is probably not wanting to face more suffering.  Perhaps I don’t want to examine with different eyes this "most beautiful time" in my life for fear of tipping things off balance.  Perhaps I am afraid that, if I read about my friends' suffering, I will discover more suffering in myself.  It may very well also have do with wanting to maintain the self-deception of my own unique position.  In Ellen's case, I probably don't want to face my envy of her wide readership.  I don’t want to read about their discoveries, perhaps thinking they would compete with my own. 

I’m not sure of any of this, but my behavior still strikes me as self-centered although after this writing, it's perhaps more understandable.  When I don’t look  at my friends’ worlds, I’m certainly limiting my own.  I know how important it is to me to have others read this: I don't feel so alone.

It’s more than a little embarrassing, especially since I've asked both of them to read this before I posted it.  Will my exploring these reactions here change my behavior?  I hope it’s not just my guilt that forces me to their blogs.