The End is a series about end-of-life issues.
It was just after New Year’s in 2012 when I ran into my friend Felice at Costco. She asked me how I was doing, and I told her.
“My dad is dying,” I said. My sister and I, along with our husbands, had just spent Christmas in California with my father and stepmother, and it was clear that Dad’s Parkinson’s, diagnosed two years before, had reached a new and critical phase. My sister, stepmother and I kept slipping off to cry together, so shaken were we by the fact that he was really dying now.
In Costco, I told Felice that I would do everything I could to help my father, but that I had resolved not to feel sad.
“He’s still alive,” I said, thinking he might last a few months. “I’ve decided to wait and feel terrible once he’s dead.”
“Or not,” she said brightly, and gave me a hug.
Or not. Those two words followed me around for the next three years while my sister and I made our separate trips to California every other month, as I took on all the extra work I could find in order to pay the crushing costs of in-home care, as I made those sad, daily phone calls. When my father could no longer hold the phone, my stepmother put him on the speakerphone, and when he could barely speak, I carried on the conversation without him.
Along the way, his neurologists had decided he didn’t have Parkinson’s after all. He had a similar disease that’s often mistaken for Parkinson’s called progressive supranuclear palsy. Then they decided he probably had both Parkinson’s and P.S.P. Not that it mattered. Either way he was frozen solid, his muscles boiling beneath the surface of his skin. He liked to hold hands in the last months of his life, and holding his hand was like holding a linen sack full of bumblebees.
My father’s medical care did not contain a single heroic measure — no feeding tube, no respirator. Some of the pills he took calmed his condition for a few hours at a time, but none of them improved or slowed the progression of his degenerative neurological disease. What my father’s care lacked in heroics it made up for in bravery, especially on the part of my stepmother, who cared for him at home with unflagging love and good cheer. We had arranged for round-the-clock help, because my stepmother could no longer lift him by herself in and out of bed, on and off the toilet, in and out of the shower.
But even with help he was her full-time job, and I knew that without her he would have been my full-time job, or my sister’s. My father, strapped into his wheelchair, never stopped demanding in his vanishing whisper that he wanted to go: to the opera, to the movies, to his weekly Rotary meeting. She brushed his hair and teeth, stretched his bent limbs, kept him clean. She cut his food into smaller and smaller bites and fed it to him slowly, a perilous task as he was prone to choking.
I had been wrong when I had told Felice that I would wait until after he died to feel sad. I felt sad about my father all the time. When I closed my eyes at night I saw him lashed to a raft in a storm-tossed sea: dark rain, dark waves, my father crashing down again and again as he waited to drown.
Frank Patchett had been an officer with the Los Angeles Police Department for 33 years. He was part of the group of men who brought Charles Manson in from the desert. He was the guy who took in Sirhan Sirhan the night Bobby Kennedy was assassinated. After his retirement he often spent three hours a day working out. When he first got his diagnosis of Parkinson’s in his late 70s, he could still do 100 chin-ups.
My father died last month at 83 when my sister and I were on the plane, coming out to say goodbye for what felt like the 57th time. There was a message on my phone from my husband when we landed. What I felt when I heard the news was joy.
I had told Felice that I would feel bad when my father died. “Or not,” she had said.
My father’s body was still at the house when we got there. My stepmother, crying in a roomful of friends, said she wanted him to be there for us. My sister and I went into the bedroom together, and there he was, his head tilted back on the pillow, his eyes closed, his mouth slightly open. We kissed his lovely face and cried and held each other, then we looked at him again. There was something funny going on. “He looks like he’s about to tell a joke,” I said, peering closely. My sister, who is a more tender person than I am, quicker to cry, leaned forward. “Dad,” she said quietly. “Say something funny.”
WHEN we went to sit among the crying people in the other room, I was stunned by the explosion of happiness spreading through my chest. Of course I was glad for my father, the end of his suffering, his ticket off the raft, but it was more than that. I was glad for my stepmother even as she sat beside me in her fiery grief because she was still healthy and young. In time she would go out with her friends again, take a trip, read a book, waste an afternoon looking at shoes. I felt glad for my sister and for myself, that any bit of extra time and money we had would no longer be offered up in the name of filial devotion.
This wasn’t about whether or not I loved my father. I did love him. He was brave and funny and smart. He could also be difficult even in the full bloom of health, and he often drove me witless. I was happy for all of us that this hideous struggle, which had extended past the most unreasonable expectations, was finally over. I was trying my best not to glow.
I stayed on in California for a while to be with my stepmother. I confided my happiness to a few friends and for the most part they were quick to assure me that I would be grief-stricken soon enough. They meant it kindly. By using the words “death” and “joy” in the same sentence, I had gone far beyond the limits of the standard “He’s in a better place.” They wanted me to know that later I would have the chance to redeem myself through suffering.
“What if you’ve thrown a dinner party,” I said. “And at 11 o’clock your guests got up to leave. The dishes were still on the table, the pans were in the sink, you had to go to work in the morning, but the guests just kept standing in the open door saying good night. They tell you another story, praise your cooking, go back to look for their gloves. They do this for three years.”
I’ve often wondered why the people who seem most certain about the existence of God are the ones who want to keep the respirator plugged in. If you were sure that God was waiting for your father, wouldn’t you want him to go? Wouldn’t you want him to go even if you didn’t believe in God, because death is the completion of our purpose here? He’s finished his job and now is free to send his atoms back into the earth and stars. Isn’t that really kind of great?
Like most everyone else, I’ve had my share of grief. When my sister’s husband died unexpectedly last year at the age of 59, I fell down the open manhole cover with my sister and the rest of the people who loved him. But my father? He’d been gone for such a long time. He had told us how much he loved us, and we told him how much we loved him, again and again and again, until there was nothing left to say.
Except for this: Dad, there is joy in the place that you left.
Ann Patchett is the author, most recently, of the essay collection “This Is the Story of a Happy Marriage.”