When Elizabeth Edwards died last month, she was at home. When I heard that, 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.
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.
Robin Moore 2010
Tags: anger, Depression, guilt
I was intrigued by the title of your article. I, too, have such regrets about the manner in which my husband died four months ago. In his case, the doctor gave up on him, and actually washed his hands of him after he asked to be referred to a specialist. Because his pride was hurt, he abandoned my husband, did not come back to his hospital room (though he billed for 4 more visits), and ordered him released. I had no hospital bed, no oxygen monitor or the bi-pap machine our entire family had begged the doctor for. My husband died a horrible death, suffering, strugggling to breathe. The hospital got to keep its death count one lower, and the doctor got his revenge for our daring to ask for additional help because he obviously did not know what he was doing. My guilt is because I did not call the ambulance to have him taken to another hospital where someone would have some mercy and care, and instead meekly tried to follow the orders we were sent home with. The doctor would not even take a call, and his office pretended they were closed. The one on call acted aggravated that I had bothered him and said, “Put him at a 45 degree angle and he’ll be fine.” Well, he was not fine, and he died the next morning because he needed the bi-pap machine desperately. There was no referral to hospice, so there was no relief for him that later I found would have been possible if he had a hospice nurse. He was basically executed by his doctor, with no mercy at all. He called when he was told he died, and told my son he knew he was going to die soon. How about telling his wife that? So he was denied all of the merciful care that he would have had if we had had hospice. I write this because of readers who might be looking at this article because of their loved one’s impending death. I never imagined that a doctor would do this to someone, or a hospital staff follow orders that they knew would lead to someone’s horrible suffering – but they will. You have to fight for mercy for your loved one, if the doctor has no feelings whatsoever. I know he did this because he had a hatred of him because his illness was caused by smoking, though he had quit two decades ago. I knew when he spent his last visit with him lecturing him as though he deserved his fate. Know that this can happen, and that you, the caregiver, may be in a position to have to fight against a doctor rather than going along. His orders were designed to put an end to his life rather than to extend it, or even to ease his suffering. He would be here today had he had the bi-pap machine, and this man denied him so that he would die when his oxygen level dropped enough. My husband died at home, and I watched him take his last, tortured breath, but it was suffering beyond imagination that haunts me every moment. Having cared for him so tenderly for 2-1/2 years, always with the promise from doctors that he would get stronger and walk again (adrenal failure due to IV solumedrol), I failed to fight for him at the last.
So for anyone reading, please do not allow a hospital to send your loved one home to die without anything to ease the suffering. I found out after he died that he could have had morphine drops under his tongue to take away the horror of being unable to breathe.
How could this happen? In a rural setting, a town of only 25,000 and a hospital owned by the local doctors, their concern could be getting the 20% they will bill to a person who is deceased, or their hospital’s death count and competition with the other hospital in town. Had he been in a teaching hospital, or had more than one doctor, this would not have happened. Surely more than one doctor would not have done this to someone – someone would have spoken up for the patient. I regret not moving to a much larger place the minute we knew he was ill. I regret trusting anyone. The nurse and respiratory therapist knew, because I could tell from the looks on their faces as I asked them how I was going to care for him without the right equipment or a hospital bed, but they dared not speak up or it would mean their jobs.
After his death, I wrote hospice a letter, telling them they needed to call on every doctor in town and make sure their nurses knew as well, that they existed, what they could do, and simply that it is not even human to allow someone to suffer when it can be prevented. I heard, from his doctor’s nurse, that they came there and talked to them. I wanted to help avoid this happening to someone else. It does not hurt to talk to hospice in advance, even if there is only a chance that your loved one may die, so that you will know what is available to you when a doctor doesn’t care.
Thanks for listening, and I hope this might spare someone else’s suffering.