The choice that I was faced with on January 25, 2018, and the decision that I made, was nothing short of a choice between two jagged halves of my cleaved heart. Inpatient hospice or home hospice?
Every piece of my heart wanted Matt home with me, wanted Matt to spend every single one of his last seconds in his home, surrounded only by people who loved him, who understood the great loss the world would experience when he left. And also, every piece of my heart wanted to protect G and H from the things I’d seen and heard in the last few weeks—the bowel and bladder dysfunction, the anger, the leg spasms, the confusion, the broken spirit. They’d seen so much already but they should not see it all in their home, without the filter of a medical setting.
So often over these last months, I’ve written about the need to be in two places, the struggle in choosing between Matt and G and H, being a caregiver and a mother. This choice felt like the culmination of that struggle. And how was I supposed to choose?
I sought out advice everywhere. From the doctors, the kids’ therapist, family, and friends. The answer was the same every time. If Matt was Matt, the real Matt, what would he want? We’d never talked about it, so I could only guess; I could only fall back on my own gut instincts and the thoughts of the family and friends who knew and loved him.
Ultimately, I chose what I chose for this reason: Every decision we’d made since June 6, 2016 had been to protect G’s and H’s future, their hearts; and ultimately, I fell back on that question. What would protect G and H? What would give them a semblance of peace?
With the heaviest heart, I chose inpatient hospice. And I worried I was failing Matt, abandoning him. But one year later, with the benefit of hindsight and the clarity that comes when the fog of those worst days lifts, I know I was wrong in that worry. The decision I made one year ago today was not a choice between Matt and G and H. It was a choice for them, for all of them. A choice to preserve G’s and H’s memories, their hearts, and their innocence, and a choice to protect Matt by giving him the peace of mind in knowing that his children, to whom he would have given everything, didn’t have to live a life haunted by the worst moments. It was the right choice for our family in those moments.
One year ago today, after attending a presentation in G’s classroom—a blur of moments and pretending to be a whole person with an unbroken heart—Matt’s mom and I drove over the George Washington Bridge into the city. Again, Matt mostly slept and I didn’t tell him what was happening in the moments he was awake. Not yet. I hadn’t worked up the courage, yet. We—I—signed the papers for hospice and arranged for Matt to be transported in the morning.
Matt woke in the late afternoon when his cousin came to visit. He sat up, had a relatively normal sports-centered conversation, and ate a Wendy’s spicy chicken sandwich. He seemed almost—kinda sorta unbelievably—clearer, somewhat back to himself. Hours earlier I’d signed hospice papers, and now it seemed improbable that I would have done that, that the doctors could have said only weeks remained. That amazing brain.
Matt asked me to help him with chapstick because his lips were dry and cracked. I found the chapstick and unscrewed the cap. I put it to Matt’s lips—and he flinched, he yelped in pain, and I pulled my hand away as if I’d been scalded, or as if I’d scalded him. The doctor had told us that because of the tumor in Matt’s spine, the tumor surrounding all those nerve endings, he’d likely have a lot of pain all over; our challenge would be to keep that pain under control. Matt snapped at me and said something inconsequential that I don’t even remember. But I remember the way it stung—something that maybe once I would have seen as teasing, but too many paper cuts had made me too sensitive. I was terrified to go near him after that. And I remember the horrible thought that had raced through my mind: I wasn’t making Matt happy anymore; I was making things worse when I desperately just wanted to make things better.
That night, when we (Matt’s mom and I) left Columbia, I knew it would be for the last time. In the morning, Matt would be in hospice in New Jersey.
I did not know, when I walked away from Matt convinced that the doctors had once again underestimated him, that it would be my last chance to talk to Matt. I did not know or think to pay attention to the last words he said to me before we left.
I’ve spent a year trying to remember his last words, trying to remember if I said “I love you” and if he said it back. I’ve spent a year trying to remember and I simply don’t know. I have to hope I did and he did. I have to hope that if I didn’t, he knew it, anyway. I have to hope that maybe last words aren’t as important as the millions and millions of words that came before. Once, Matt thought we were perfect. I have to hope some part of him never forgot.