Posted 16 March 2004

Judy and Fred Ewens

I grew up a small-town girl with small-town dreams and lived an ordinary life. My years as a caregiver changed forever my perception of what matters. I often wear a ring engraved "Hopes and dreams and the possibility of it all." I now have an uptown dream: to make a difference in that world inhabited by dementia patients, their caregivers, and the people who search for answers. I have great hope; I believe in the possibilities. Fred Ewens was a very, very smart man. The puzzled words "Judy, I can't remember how to tie my tie" plunged us into an imploding world. He clung to the initial diagnosis (it's not AD), and I could never tell those blue eyes he wasn't going to be smart any more. He struggled valiantly to retain autonomy and dignity. I remain awed by his courage and feel honored to have shared his life—all of it.

Real emergencies aren't like a media clip, replete with unrelenting, if jerky, images and cacophony. Real emergencies are jagged and uneven: frantic forges an uneasy alliance with queasy calm. And you hear the images long after the sounds fade.

A half hour before moving my husband to a nursing home, my obligatory talk with the director of the "nice" facility exhausts our reservoirs of platitudes and deteriorates into pointless drivel. The phone rings as I rise to leave the office. "Get up there. He's in distress now."

Alone in the elevator. Not too concerned. Define "distress" first.

The elevator door opens on the sight of a rugby scrum of flailing arms and legs and frantic efforts to control them. The awful guttural sounds of a man in the throes of a powerful seizure compete with the curt, conflicting directives of paramedics trying unsuccessfully to subdue him enough to sedate him.

I blow past the officious "Please stand back, ma'am," tunnel under the ring of strangers, throw myself spread-eagle across my husband, and try to do what I've been doing for over five years: remain calm, direct traffic, diffuse chaos, create dignity where there is none. I add 95 pounds to the effort to hold his arm steady for the IV needle, dispatch an onlooker to find my purse, try unsuccessfully to prevent his daughter from seeing him like this, insist that she go outside to call the rest of the family. Blood spatters us all, flying from a badly bitten lip and the continuing futile attempts to insert an IV. I finally snap at the reluctant young paramedic trying for the perfect angle to "just do it, for heaven's sake-how much worse off can we be?"

The brief, sweaty silence that marks his success is replaced by sounds of the struggle to fit the gurney into a too-small elevator, followed by fervent swearing as we crawl over, under, and around the gurney, IV line, tubes, and each other to squeeze into a freight elevator. Outside at last, the commotion congeals, as each person does his job, and I am forcibly diverted to the front of the ambulance for the safety of a seat belt. As if I care. The images in my head obliterate the wail of the siren.

The practiced flurry of the ER excludes me, and I am tugged down the hall toward the bored murmur of the business-as-usual office. Forms to complete; insurance cards to photocopy. Can't leave yet. More forms; signatures. Then back to the counterfeit order of the ER. The doctor calls for a ventilator, and I whirl to say, "No, he has an advance directive." But a nurse rushes over: "It isn't like that; they used anesthetic to stop the seizure, and his airway will collapse; you can always have the ventilator removed if appropriate; and you can't just let him smother, can you?"

I've never seen even a little seizure, never thought about one, never considered that you might die from one. So what's appropriate? I let them treat him. It's difficult to think straight with blood under your fingernails.

Scans are scheduled for later; there's no hurry now; I am to go upstairs to the ICU waiting room. Send his shell-shocked family back to clean out his room to give them something to do, then realize that I have no idea where the waiting room is. Wander off alone through bleak, friendless halls-obediently searching for a place I don't want to be, dreading the stew and stir, persistent telephones, and always-on-but-never-watched TV that will greet me there. Wherever "there" is.

The waiting room stands empty. The TV whispers an indecipherable babel that someone, some time, mercifully turns off.

And I wait. Still alone. Vaguely aware of the competing ruckus of images and sounds in my head. Wondering if they'll ever blur into silence. Wondering how to get the blood out from under my fingernails.

After four days in intensive care, Fred Ewens was moved to palliative care in accordance with his advance directive. He died on October 5, 2002, at the age of 56. A brain autopsy confirmed the cause of death as Alzheimer's Disease.