When The Truth Doesn’t Matter

Probably the hardest thing about having dementia…is having dementia.  Everything is confusing.  And the worst part, as some of my patients tell me, is that they know they should remember and understand things that they just don’t anymore.

Well-meaning caregivers – often the family members – frequently have difficulty realizing that correcting someone with dementia is almost always the wrong approach.  Same for reiteritating something so they’ll “remember it this time,” like where the salt is located. In such circumstances, the patient will dutifully pay attention, looking astute and interested.  But, depending on how bad the dementia is, they probably won’t remember it if they couldn’t in the first place.

If you care for a person with dementia, my advice is to resist the urge to help them get details of truth correct unless absolutely necessary.  I can’t think of an example where the actual truth of situations is less important than in an environment of progressed dementia.

Recently, a patient of mine declared that his food was “poisoned” because he saw white flakes in it.  The flakes were actually a protein supplement added to help them keep his weight.  The patient’s friends and family having dinner with him that night quickly tried to correct the notion by denying the patient’s claim.  Their resistance to his thinking is totally understandable, especially because they were involved with placing him in the facility and they don’t want him to second-guess their commitment to him.  But opposing the claim with something seemingly innocuous like, “Oh, no, don’t worry about those flakes.  That’s a protein supplement to help you maintain your weight.  Just go ahead and eat it.” is this not only an unwise response…it’s exactly the wrong way to handle this situation.

The patient believes what he thinks.  Like Curt Cobain once said, “just because you’re paranoid doesn’t mean they aren’t coming to get you.”  In the case of demented people, you can almost never convince them of the truth of a situation and you can rarely help them remember details of even simple things that they weren’t able to remember already.

And really, who cares anyway?  Pointing out reality just makes them feel as demented as they really are.  With the food example, instead of correcting their worry about being poisoned, it’s better to take a sharp, critical look at the food, and then agree with the patient, “yeah, this might be bad.  Let’s try something else.”  The go get a similar plate of food, sans the protein flakes.

Dementia is a terrible ordeal, for everyone involved.  It’s one of the few instances where playing along with a person’s perception of reality – even one you know to be totally false – can be reassuring and calming.  Correcting mistakes often effectively draws the dementia into the open and exposes it, which only makes the patient more aware of their deficiencies.  Or it just makes them feel more confused and isolated.

If you ever wanted to be an actor…take care of an elderly person with dementia.  Most of the time, you’ll find yourself going along with the stories, perceptions and beliefs of the patient.  You just might feel like a kid again.

Long December

“So, what are these things again?”

“They’re tacos, Mom.”  Replied my mother.  “Remember?  You used to make them for all the big family reunions.”

Her eyes light up, “Oh, right!  Sure, tacos.”  She pauses here, looking quizzically down at the Styrofoam container encasing her lunch.  Home in Colorado for Thanksgiving, my mom and I have brought my grandmother lunch from the upscale Mexican restaurant two blocks from what will be her last home, Maplewood Acres, a “memory care” facility.

She can’t remember how to eat those tricky semi-circles; their contents tumbling out of both ends at a mere touch.  I get her started, and she picks up the tilted-head, angled-wrist sideways entry technique quickly, to my relief.  The specter of a grandchild feeding his grandmother remains just that.  So far, she can do it on her own.

Running through my head is the wistful love song of regret and passed time by a band I don’t particularly like called Counting Crows.  The song is A Long December and while not technically December yet, I feel the frosty presence of this year’s final month as it peers with elliptical cat-pupils on the institutions of my loved ones.

My grandma is not the only important person in my life who is confined – against their will – to institutional living.  I’m also here to see my brother, who currently sits out his days in a “correctional” (who knew The State was so filled with self-edifying optimism?) facility, and will likely do so for another 7 years.

It’s been a long December and there’s reason to believe
Maybe this year will be better than the last

So much is stripped away from a person when confined to life in a institution, bereft of so many thoughtless freedoms most of us enjoy.  Finding my grandma’s soul while surrounded by such overuse of linoleum and concrete forces me to conjure my own motionless memories of a sun-dappled childhood still sticky from melted push-ups.  It demands deliberate recall of Saturday mornings sitting on the “Davenport” watching Batman and drinking orange juice in a round bottle that looks exactly like a big orange.

When I see my brother, my hero, encased in his own steel and bricks, it is hard not to lose sight of him.  There he sits, treading helplessly among statutes and manipulations and moral failings; covered in the rough textures of a prison-issue green body suit.  In these times, I have to stir up neurotransmitters from a cauldron of memories, plunging to the bottom of that old dented pot and scratching vigorously on an already-scratched surface.

Frantically, I scrabble for even fleeting memories of the valiant rescues and great conquering exploits of two young boys.  The industrial-strength disdain surrounding these olive-drab human failures seems pumped into the visitation room with such dysfunctional enthusiasm.  In that air, it takes real energy to recall all the lessons he gave (and still gives) about school, friends, girls, driving, sports, money, parents, physics, astronomy, cards, sex and the Denver Broncos.

Here comes December…

I guess the winter makes you laugh a little slower,
Makes you talk a little lower about the things you could not show her
And its been a long december and theres reason to believe
Maybe this year will be better than the last

As the institution subsumes my relationships with infuriating dexterity, I am intimately conscious of time as it shuffles past with a painfully urgent indifference.  I’m jealous of the time it takes just to get up and pee.

One will die in her institution, the other wages a day-by-day battle to remember himself because of it.  To combat those realities we -resident and official approved visitor – fight the passage of time like paladins.  We do in fact laugh slower, talk lower, and begrudge the feeling of truncation that even the unusual span of 10 solid hours together cannot assuage.

It’s more like 2 hours with my grandma.  After that, confusion and crying overwhelm her mind, blasting into her beautiful mental stillness like those sudden summer afternoon rain squalls on the Colorado plains where she will live out her last days.

I don’t think this December will be better than the last.  Probably not this year, either.

It’s been so long since I’ve seen the ocean.

One will be lucky to ever see the wild beauty of the sea again…one most certainly never will.

Alzheimer’s at 35

I don’t like to admit it, but I can be quite air headed.  Everyone can be absentminded at times, but some of us turn this endearing trait into an art-form.  I have occasionally found myself pondering the likelihood that I, at a generally-spry 35 years, have already contracted Alzheimer’s dementia.  In fact, you can become demented in your 30’s, but it usually is a more harrowing variant of the traditional Alz dementia.  Given that I seem to have been born with a permanent Seattle gray cloud around my brain, I probably don’t have the condition (never heard of anyone born with dementia).

There are perks to being forgetful, actually.  For one, jokes are almost always funny.  You may have heard it before…but then again, maybe not, so HA! HA! HA!  Games never seem to lose their allure, either.  I once had a golden retriever (arguably the most air-headed of all mammalian creatures) who chased pebbles that I tossed into a pond.  She waded around, darting excitedly at every pebble I threw.  Of course, she forgot that she could not, in fact, sniff well underwater.  She also promptly forgot the previous pebble as soon as I threw a new one.  So I watched as my perpetually-interested dog pounced from one pebble *plop* to another, repeatedly attempting to sniff the water where she saw the little splash.  Then with a tremendous snort to clear her nose after a failed sniff, she pounced at another rock and promptly jammed her snout into the water and sniffed again.

I feel like that often in residency.  Today I realized, at 3pm, that I had been scheduled to assist with a repeat C-section for one of my patients today at 7:30 that morning.  I was blissfully sleeping at 0730, oblivious to the fact that my trusting patient was about to have her abdomen incised by some surgeon she doesn’t even know.  I didn’t even think about it until well into the afternoon.  Once I did figure it out, my heart sank.  I felt terrible.  What a crappy primary care doctor I turned out to be!  And, to add insult to injury, tonight is a special dinner with the residency faculty to herald our ascension into the airy climes of 3rd year residenthood.  Tonight, we enter the senior role of our training program.  We’ve earned this night by virtue of our continued commitment to our patients, our impressive medical acumen and our all-around professionalism.

SNoorrrrrrrrr…………..ZZZzzzzzzzzzzzZZZZzzzzzzzzzzzzzzz

Racing back to clinic – a thousand lame excuses for why I missed the surgery flapping around my head like drunken bats – I learned that the surgery isn’t actually until next month. Yes, the same day (Tuesday) and yes, the time will be 0730.  But it’s a month away.  A month.

Understand that smarter folk would never have fallen into this trap because, of course, they always know when their appointments are scheduled.  But then this type of thinking deprives them of the unique and exquisite feeling of expansiveness when they think they messed up, only to realize that they in fact have not (yet).  Suddenly, the simple fact that my afternoon was totally normal gave me a feeling of grand invincibility.  I AM THE LIZARD KING!  I DIDN’T FORGET MY PATIENT!  I CAN DO ANYTHING!