IN MY SHOES: What It's Like To Be A Caregiver
A year ago, Ken Diviney, 46, quit his job running a health club in Loudoun County, VA, to be the primary caregiver to his 21-year old son Ryan, who was left severely brain damaged and comatose after a street brawl during which he was viciously kicked in the head in a completely unprovoked attack. This Washington Post article describes a typical day in Ken’s life:
As midnight approaches, the father is where he was when the day began, sitting on the edge of his son's bed, peering into his unfocused eyes and misshapen mouth, rubbing his bare chest and scarred scalp. Checking his diaper. Making sure his boy is okay. …
Every day, he brushes Ryan's teeth and bathes him, administers 50 medications, feeds him through a tube attached to his stomach, changes his catheter, stretches his limbs and talks to him with the hope that his son can hear and may one day respond. His commitment is unwavering, yet not without moments of doubt. …
On many nights, Ken dozes on a mattress next to Ryan's hospital bed in what once was an office on the first floor of their Ashburn house. Tonight, Ken leaves the monitoring to his wife and Ryan's night nurse. …
Just before noon on a Wednesday, Ryan is in his wheelchair, head tilted back, dressed in a West Virginia T-shirt, shorts, socks and sneakers.
"All right, Ryan, we're going to brush your teeth," his father says. …
"This is your electric toothbrush," Ken announces, holding it a finger's length from Ryan's right eye. "Ryan, open your mouth."
A moment later: "Okay, I'm going in.
A moment after that: "All right, I'm in now."
Ken is unshaven. His eyes are tired. Every few minutes, he bows his head, as if resting. …
Everyone wants Ken to take a break. Wouldn't it be nice if he went out for dinner? they ask. Or a beer. Ryan would want it that way, they say, a suggestion that irritates Ken no end. No one knows what Ryan would want, he grouses.
A close relative e-mailed Ken, worrying that he'd be consumed by "extreme depression and despair," urging him to let others help with Ryan's care. "You have completely stopped living and that's not healthy," the relative wrote.
What do people expect? Ken asks. Taking time away from his son violates his sense of parental duty. Nursing Ryan - feeding, bathing, touching his skin and hair - is what makes him feel better.
"I'm the dad," he says.
He hears the front door open. A woman from the prayer group calls hello from the foyer, asking whether he needs help. Ken's shoulders sag. He appreciates the offers, really he does. But why do people just walk into their home? Why do they always seem to come when his son is naked?
An ambulance arrives just after 2 p.m. to take Ryan and Ken to a radiologist for a CAT scan and X-ray.
As he watches nurses attend to Ryan, a sadness envelops Ken that continues on the ride home. A beautiful day and we're in an ambulance, he thinks. My son should be at college. He should be living his life. He should be more than a beating heart. …
The ambulance arrives home. Ken squeezes Ryan's hand. It's 4:09. Time to brush his son's teeth.
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