Hoping This Could Be Someone Else's Life

I pinched the phone between ear and shoulder as the social worker told me what she could do for us. She talked about counseling and finding community resources, both of which I had explored already on my own.

"Sorry," I said to her, "but I don't really get the big picture. You just kind of help people?"

"Well, yes," she acknowledged. "Mine is what you'd call a soft job."

Soft, I thought.

"How do you know when you're done?" I asked.

She paused. "Well, that would be when your son, um, dies. I sometimes help families after, you know, the death, but usually my responsibilities end at that point, or we'd try to refer you to bereavement services or something like that."

I didn't tell her that's not what I'd meant. I meant that, at the end of the day, how does she know she's done her job? How can she tell whether she's helped someone, or just rounded up a bunch of phone numbers? How can she tell if she's done any good?

My polite hostility towards our helpers increases daily, and it bothers me. The books say a lot of dying patients and their caregivers become angry with the professionals at one point or another, so this could just be a symptom. But it doesn't feel like a symptom. What it feels like is-and I know I'm angry, I know I'm not being fair-the people who are paid to participate in this marathon of suffering are the ones with the easy jobs ("soft"), while those of us in the trenches slog it out 24 -7 with no benefits and no vacation days. What it feels like is bad, bad luck for us and an office door that shuts at the end of the day for them. It reminds me of American missionaries in Third World countries who close their jungle clinic at 5 p.m. so the medical staff can take a break. Or the peace corps workers with their care packages of shampoo and treats. What about the starving natives? And how did I become one?

My son Gabriel had the first of many pneumonias at seven months. During that hospitalization he was diagnosed with cerebral palsy, followed later by cortical visual impairment (blindness), reactive airway disease (asthma), and seizure disorder (epilepsy). Now, at three, he has spent more time in hospitals than most people do their entire lives.

It's the respiratory stuff that brought us to hospice via a gentlemanly senior resident. Funny, I'm not mad at him, though he was the bearer of perhaps the worst news of my life. How kind of him, I thought how respectful, to take a deep breath and tell us what all the other doctors were thinking: that a toddler with more than 20 hospitalizations for respiratory infections isn't going to last very long.

When Gabriel first went into hospice, I was simultaneously traumatized and relieved. Just the idea of it seemed so drastic, so hopeless; yet everyone kept telling me how wonderful the people were, how caring and committed. And since we were so used to scrabbling for any little bit of help we could get - allowing the church ladies to bring us dinners, sweet-talking and pleading with and roaring at the HMO-I could half-convince myself that it was just an extension of that, another set of services we could tap.

But it was at the same time an enormous shift and a relinquishing. Finally, I thought, we're going to be surrounded by people who know what to do and how to help. Finally we won't have to be the experts anymore. We'll have someone to share the burden, someone to show us the way. The big step we'd taken of putting ourselves in their hands meant that somebody else could take some big steps now, and big soft wings would enfold us, and we wouldn't have any more pain.

Turns out the hospice people are just people, not angels. They have opinions, which they tell us, and they fill out forms, which they don't show us. The nurse comes when we call, listens to Gabriel's chest, and usually suggests we have some serious discussions about his quality of life. The doctors know Gabriel's in hospice, but they tell us to take him to the hospital anyway, and the gears grind on around him and he is going to die and the gears grind on around him.

Pardon me, but this sucks. And pointing out that lots of dying patients don't get these services, that you could die in a lot more pain and with a lot less support than Gabriel, does not make me bow my head in appreciation. Gabriel only gets what hospice says he should get. Gabriel gets a nurse's visit once a week and a lot of people asking how we're doing and a long, lonesome valley that he has to walk all by himself. No amount of phone numbers from the social worker is going to take that lonesome valley away from him. He's three years old.

If I were interested in improving this situation, and not just mad about the whole thing, I would offer alternatives. I think a good alternative would be for somebody else's kid to die. I'd put Gabriel up against any other suffering kid and I have no doubt he'd win the suffering prize. Shouldn't he get to take his ribbons and trophies and go home? Can't we all please acknowledge that he's done his bit and now it's someone else's turn?

It would be fun someday to try out the other stages-denial, bargaining-but those just seem like detours. And the thing is, just because I'm angry and anger is a symptom doesn't mean there's nothing to be angry about. Let's quit talking about my feelings, let's talk about how hospice is failing me. When are they going to start easing the burden? How could they possibly think these few visits, these telephone calls, are sufficient? Who's with me here? Who's really with me?

Because it's not just Gabriel's turn-it's my turn, too. I was crushed and overwhelmed when he had to take three different medicines every day. It's now ten medicines, and I am still crushed. I was crushed when I had to do his IV infusions (the sterile water, the little alcohol pads). I'm crushed every time I feed him through his feeding tube (the enormous syringe, the sweet, clotted smell). He goes to sleep if you rock him and sing to him, but it's hard to sing when you are so crushed.

If I am very brave and think very hard about what we're doing and where we're going, I realize that I've been hoping the nurse and the social worker would take over for me. I've been hoping this would start being somebody else's life. But it's not somebody else's, it's mine: my boy, my pain, and my job, finally, to hold my son's hand, stroke his hair, and be with him as he dies.

But I'm not brave, I'm small and frightened, here at the edge of this darkness. Take this cup away from me. Take it away and give me back that sweet-smelling baby you promised.

The hospice chaplain wore a shapeless brown dress and told me over French fries that you can have God and you can also have really bad stuff happen to you. Look at the crucifixion, she said. Look how God didn't jump in and end it. I said, you know, I'm tired of this stuff, miracles for other people, septuplets on magazine covers, and for me a piercing lesson in Christian theology.

At this point, and to her credit, the chaplain didn't walk through the hospice brochure's bullet points on "best possible care" and "opportunities for growth." I should know better than to read the brochures, just as they should know better than to print them. Even though it seems preposterous, you can paint death as a fulfilling spiritual journey- and a mother will believe it, believing anything that promises to take away the pain. Well, I'm here to tell you, this isn't fulfilling. This is emptying. This is the spinning carnival ride where the floor drops out, you're splayed against the wall, and you can't even lift your head to turn away.

I often ask the hospice people if they feel they have a "calling." It's the only explanation that makes sense. Me, I wouldn't be here if I didn't have to, and it amazes me that someone would choose this. People who take on a hospice career, full of pain, death, and true emergencies (light-years truer than a flat tire or a crashed hard drive)-such people are remarkable. Someday I'll thank them. But it won't be any time soon.

These days, the salt of the earth and the milk of human kindness aren't enough for me. I want a hospice that provides encapsulated lightning bolts for smiting and coupons redeemable for time travel, ubiquity, and omniscience. I don't think that's asking for much.

In Memory of:
Gabriel Ricardo Marquez Uppman
May 15, 1997-November 17, 2000

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