Elizabeth Edwards (3): Dying at home
Elizabeth Edwards was sent home to die, and I felt pins of jealousy pricking into me. My husband died of cancer after two years of fight: you might expect I'd hear echoes of the last days and of the loss. But no. The hurts were petty, many, and sharp.
Because Gavin couldn't die at home, the way he would have wanted. And it was because of me.
And because of those nurses in the ICU, loving and kind to me and my little girl, who wasn't supposed to be allowed in, but they saw how his numbers jumped when she entered his windowed area of the ward. How his face would light up, so it was worth breaking any rule, despite the risks to her and him and me. After all, it was a temporary transgression: no one stays in that ward long.
Adela, my favorite, the head nurse ("Adele" had been in the top 10 names for our daughter), was the one to really work on me. "You say he doesn't want to die in a hospital. You need to work on getting his discharge as soon as you can." (Discharge was tricky because our oncologist didn't have privileges there; she couldn't reach anyone she knew, because it was a holiday weekend: Memorial day.)
I'd always heard that inpatient hospice was hard to get into. "We'd really prefer to take him home for these last few months," I said hopefully, not knowing they were thinking weeks (it turned out to be just days). Adela danced delicately around it, but within hours another staffer was more direct: "You can't handle having him at home."
But I'll have help. We have wonderful friends.
Won't hospice offer volunteers?
Look what we've been through already.
I can do what's needed. I can do what's right.
He died 4 and a half years ago and now I accept what they were saying: I couldn't have handled it. With a small child, his senile mother, and insurance paying for nearly nothing… the brutal truth was I could not have changed his diapers in addition to my toddler's. It stung to hear it then, and still to say it, but: I hated being a caregiver, even to someone I loved who I desperately wanted to live. And it would have been more dangerous.
But deadliest of all was to stay in the ICU. They really wanted us out of there. And he knew they were treating him differently, that they'd given up. Instead of being the most-well person there, I think my husband picked up on the fact that he was starting to fit in. "The ICU is not a place for extended dramatic intervention. People just don't last here. It's for emergencies. When there's nothing more to do… well, it's not a good place to spend your last hours."
I just thought maybe they could make an exception and allow more visiting hours. It wasn't a bad place… look how attentive they were to me. What came across as care for me was really their strong desire to persuade me to save what was left of my self and family by getting him into hospice.
To Gavin, the ICU was a neglectful lonely place. His veil was starting to lift: he saw what was really happening. I am sure he was willing to go to hospice before I was willing to sign the papers. I said it was just so he could recover some strength, and I could have some respite, and then we'd bring him home. The timeline was rather Hallmark: months of adjustment, designed by my mind for my own emotional convenience.
None of us had any control over the timing, of course, not even Adela. All the staff, the hospice experts, everyone was off by weeks. He died four days after transfer. He'd been fighting that hard all along and he took the rest he was offered.
I was a zombie with a job: I told visitors to "please tell him that you'll take good care of me and Short Stack and Frances, and that it's okay to leave if he needs to." I was choking, and I was also saying, "it's good for him to hear that, you know, just in case."
My chief regret, my advocacy, is that we didn't start hospice sooner. We could have recognized that this disease in this man at this time was just too powerful. I know that living with denial is actually a good idea when you're faced with a terminal illness, but regrets have nagged me all this time. I like to blame Gavin and the endless positive fight at all costs, but a lot of the resistance must have been coming from me. I pulled over on the parkway to cry in angry helplessness on the way over to that appointment. In the end, I signed the papers out of sheer duty.
I was frustrated that everyone thought — knew — I couldn't have handled him at home. Finally, now, I accept that they were right. I give myself permission — that old me, the one who hadn't seen anyone die — to be an imperfect caregiver. I know my family is better off because Adela got through to me.
I was envious that Elizabeth Edwards had the chance to go home to be with family when my husband didn't.
But death laughs at all our petty jealousy: before I had the chance to write a blog post (never mind three!) she was gone. A woman who'd advocated for hospice didn't get much time to enjoy her loved ones outside the hospital. Her courage, her honesty, earned even her just the barest bit of peace.
We all deserve more than that moment.