Disabled? Daft? Demented? Which is he?

Until last week’s Cognitive test at the Movement Disorder Clinic in Phoenix, I insisted my husband David, was disabled not daft. But now the test results have declared him officially DEMENTED, I don’t know what to think.

“He’s crossed the line from DEMENTIA to DEMENTED,” the neurologist peered at us from across his desk perhaps expecting us to cry hearing the diagnosis spoken out loud.

But to have it proved my sweetie-pie was DAFT, to hear the doctor state he was demented stunned me to silence. David sat impassive un-fazed by the pronouncement. I suppressed a smile. OK, temporarily daft I could accept. True, David often appeared mentally challenged when he SWITCHED OFF flopped sideways unable to speak a word. But what of the many times his recall of names and places were better than mine, and his communication skills, speech and thoughts flowed grammatically correct. What of the fluent conversations we frequently shared? Demented indeed — no absolutely not. I know the brilliant man I married lurks today cosy inside his shell.

Only last Sunday I overheard David chatting to his best friend correctly using the word specificity discussing the pros and cons of a particular seizure drug.

Only last month, when a distressed friend of mine broke down not knowing what to do about her teenage son’s sudden raving in a psychotic episode. “Talk to David.” I suggested and left them closeted together.

“David was fully on for the whole hour,” she related later. “…and gave me the most helpful and perfect advice.”

Made the demented diagnosis laughable really. Call it denial, resistance to me facing the truth, David’s intelligence shone too often to accept the test’s damming results. After all there were reasons to explain his low score.

A hole in his skull, for one thing. Caused when his mother tumbled down a flight of stairs with David clutched in her arms. He was two. The fall knocked out the spatial lobe of David’s brain — a section of IQ tests that forever scored ZERO. So he couldn’t draw a clock face, or copy a shape? So what he flunked those tests? Brain damage explained the low overall numbers. After all, I excused, before PD, Stanford once classified him GENIUS.

STUPID, DAFT, DEMENTED different spins of one coin. Parkinson’s dementia pops in, pops out. David too. The turtle image came to me–a turtle’s rise and sinking to and from the water’s surface.

“Today’s date? The town we’re visiting?” Easy. Recalling details of a story, lists of objects, a series of numbers numbers — not so easy. Perhaps blanking out the incoming President’s name was David’s protest. A defiant gesture of rejection of the new Commander-in-Chief’s twitter-mad Administration.

Guess what the Movement Disorder clinic discovered from the read-out of the ambulatory EEG hat? David’s left temporal brain lobe was in and out of constant seizures, while the right lobe remained normal.

HURRAH. Seizures could be dealt with. We had a reason for David’s unresponsive switched off episodes.

I swallow ashamed of the times I’ve yelled when my poor husband froze and I dragged at his walker, “This way. Mind where you’re going. Lift your feet…” On and on.

“If you can’t use your eyes, use your G’…dam brain.” My shouting sticks in the walls.

He was seizuring — of course David couldn’t move. Right himself in his chair or lift his cheek from the table. Of course he was unable to speak. Whatever the test showed, I knew he was no simpleton.

I shook my head. Why hadn’t his local neurologist researched a reason for David’s increasingly frequent off episodes when I’d asked her over and over again?

“Freezing is just part of Parkinsons.” Was the answer given. “… and anyway an ambulatory EEG is not covered by Medicare.” Our request for further testing — denied. The danger of David falling, knocking himself out, fracturing a leg, his ribs…ignored. The frightening impact freezing has on our lives. Like the moment three years back, de-planing in Frankfurt, the horror of the air stewards as he stiffened immobile, eyes glued shut, blocking the gangway; like the time in the Jacuzzi after warm water exercise class. The instructor wanted to call the ER and it took three men to haul him from the water and into a wheelchair.

No. No. No, you doctors out there who dismiss a symptom described by their patient or caregiver, NO it is not acceptable to fob us off with a platitude.

BE PRO-ACTIVE is the lesson. Don’t let up. Insist on an informed answer. If you don’t get one, Caregivers, LOOK ELSEWHERE. Another state if necessary.

Makes sense doesn’t it to find out what is going on in the brain? Thanks to a presentation to our local Parkinson’s support Group, we found the Neurologist who suggested mapping David’s brainwaves.

I’m surprised how much I’m more relaxed, gentle towards David even, now I understand David’s not being obstinate when he does not respond. Seizures are the culprits not him.

Despite the Demented finding, people speaking for David sends me nuts.

“What would HE like?” Pencil and pad poised to take our order the waitress looks at me not him.

I do speak for him when it is obvious David cannot respond. I barrage him with forced alternatives — yes/no questions — wait for his nod, headshake to order his menu choice.

“Lasagna? Shepherd’s Pie? Caesar salad?”

To my mind, addressing him directly is polite. Is showing respect too much to ask? I have a friend who says, yes.

Yes, it is too much to expect of people, busy wait staff for example; too much to expect others to give him a chance to answer before turning to me and talking over him.

She, my friend, says it is not a stranger’s business to deal with his slowness — to have them wait awkwardly while David gathers his thoughts. Forms a reply.

“That’s your job, not theirs,” she tries to convince me. “Face it. When David acts demented, he is. It’s downright rude of you to put a stranger in an uncomfortable position. David too.”

Oooh, I don’t quite like what she says. It gives me pause. Something to mull over before taking him out to a restaurant again.

I ask you caregivers, DO YOU AGREE?

I like our Family Practioner. I’m grateful he speaks to David directly. Asks the usual how-are-you-what’s-going-on questions. Waits patiently wondering if David heard the question. David sits GONE no answer forthcoming. I am forced to ask, “David would you like me to answer for you?” and when David nods, I rattle on speaking for him.

SLOW BRAINWAVES are a part of his Parkinson’s picture, we’ve learned from the EEG.

That is all I ask — the chance to speak for himself before turning to me. Surely the difference between DISABLED and DAFT is obvious without carrying a banner?

Not a bad idea in one respect. Perhaps he should wear a T-shirt plastered with I’M NOT AN IDIOT. IT’S PARKINSON’S.

Encountering someone normal looking who gives a sudden lurch, acts clumsy or plain odd is SCAREY I now realize. David’s walker proclaims, HEY, I’M DISABLED, Walking sticks, wheelchairs, a blind friend’s dark glasses and white stick, my deaf son’s cochlear gadget stuck to the side of his head, an artificial limb…

Guess what, Caregivers, VISIBILITY helps a stranger understand a person is disabled.

I discovered this last week in Phoenix during a three-day, round the clock brain test requiring him to sleep, eat, and walk with his head bandaged like a wounded soldier. Down his back a trail of colored wires attached to a battery pack labeling him disabled.

“Let me help you.” Doors opened and were held till we had passed. “Would he be more comfortable in a chair with arms?” Where I imagined stares and awkwardness driving us to hole up in our motel room, strangers smiled empathetic.

Question: AM I DAFT BECAUSE I DO DAFT THINGS TOO? Lose keys. Squirrel away special chocolate treats never to find them for months. Search for my reading glasses to discover them on my nose. Does being forgetful make me daft? Or acting without thinking? Plunging into a Guatemalan lake before checking, for example. Discovering too late the jetty from which I jumped was the alligators’ favorite spot to cool off. Brrr. I shiver…sharp teeth…ripped flesh…my stupidity.

Perhaps it is me who is daft or Doolally Tap as my father used to say — a village in India where mentally disturbed British soldiers were treated. I often talk to myself now. Worry I’m losing it. Example: last week when I bundled David to the airport on the wrong day and we missed the flight. Then yesterday. Engrossed, tap-tapping words on this computer I forgot David’s pills, not only to count them but to give them. More often now, I obliterate the present…emails, kitchen chores, phone calls — you know — NORMAL STUFF — and, well, plain forget. “Just stress,” I excuse myself. “I’m operating on auto-pilot, that’s all.”

“Remember,” I tell myself, “…remember to remind David to remind me to… Now what the devil was it I had to remember to do?”

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Next week’s blog: WISH YOU WERE HERE