Peggy’s sister Sally phoned her this evening, just as Peggy was setting out for South Davis to spend the evening with Brooke. “I’ve got some concerns,” Sally said. Peggy was driving the car up M Street, along 11th Avenue, then turning into the road that bends into City Creek Canyon, where Brooke’s bicycle accident happened. Sally is among other things a nurse and a psychologist and a grief counselor, so when she says she’s got concerns it’s important to listen. It would be anyway, if she’s your sister, and anyway even if she weren’t. Other people often notice things we don’t.
“I’ve been reading the recent entries on the blog ,” Sally said, “there’s a lot about how important your friends are.”
“That’s true,” I said, “they are important. Friends mean an enormous amount to Brooke; they make a huge difference in his life (and mine). He says he’d be nowhere without friends…” (and I added under my breath, probably not even alive). After all, that’s the difference a wonderful “support system” can make.
“Here’s what I’m worrying about,” Sally said. “When you keep saying how important friends are, how indispensable, how crucial to Brooke’s wellbeing, I’m worried that his friends will begin to feel a little trapped, a little constrained, as if they somehow owed it to Brooke to keep coming, instead of just wanting to, like an obligation they can’t get out of.”
“Hmm,” I said.
“I’m especially worried that when Brooke comes home, they’ll feel trapped into doing the medical stuff, into babysitting him while nobody’s there. They’ll be scared by everything, the cathing, the positioning, the respiratory stuff. And they won’t be able to leave.”
“Hmm,” I said, reflecting.
I was thinking about how visiting Brooke might seem to other people, especially people for whom the medical stuff is a little intimidating. After all, when you visit here in the hospital, sometimes things go smoothly and a visit is really pleasant, but sometimes there are crises—maybe pain, sometimes choking, often respiratory troubles requiring suctioning, possibly even bagging. This isn’t pretty. This is scary. This could even be life-threatening, in a serious respiratory crisis. So how might this seem to friends and visitors, and would it scare them away once they got here, or keep them from coming in the first place?
Sally said, “I think this will be an even bigger problem when Brooke comes home. After all, when he’s in the hospital, there’s a whole staff of nurses and medics and respiratory therapists trained to do whatever’s necessary in a crisis. But how will friends feel if they’re visiting at home?”
I tried to explain that when Brooke is home there’ll be 24/7 care. We’re busy hiring folks right now, and all the folks we’re hiring are being trained by the hospital in all aspects of Brooke’s care: in aides’ tasks like positioning, bathing, transfers to the wheelchair; in nurses’ tasks like giving medications, cathing, bowel care, suctioning, and troubleshooting in general; in respiratory therapists’ jobs like suctioning and cough assist and changing out trachs; and even in medics’ tasks like trach care and being prepared for serious emergencies. These folks will always be there even when visitors are there, sometimes doing stuff, sometimes hanging around in the background, maybe even in an upstairs room where they can read or study, but always connected by intercom and always ready to appear on an instant’s notice to do what’s necessary. Of course a couple of friends have volunteered to do this too, but it's not in any way expected.
In other words, friends are important, indispensable, crucial to Brooke’s wellbeing, maybe even lifesaving in a larger emotional and what some might call spiritual sense, but it’s the whole tribe of caregivers we’re hiring who’ll be responsible for the medical part. And for being there all the time. And for doing what’s necessary. And for making it possible to enjoy Brooke’s company and the company of one another without having to worry about his physical care. And they can leave anytime.