While I was in Florida, in between selfies, sunscreen, and bopping a baby on my hip, I got a call from Hospice of New York. I was told my mother is no longer sick enough for hospice. She isn’t improving, that is; it means she’s just stable enough that Medicaid won’t underwrite her care anymore. So now it’s back to a hospital medical floor, so she can be transferred to a nursing home, where it’ll be easier to transfer her back to hospice with less interference. They begged me to review, print, sign, and fax documentation to them. That I was out-of-state meant nothing to them. At some point I turned my phone to silent.
Later this week I have to go to Sealy-Cuyler. If you’re a churchgoing local in Brooklyn you may recognize it as a black woman-owned funeral home. They buried my uncle and my grandmother, and they know my family, my church, my deacon. I tried to have a phone consultation but I have to come in. My hands are clammy at the thought; mommy accompanied me on previous trips. I’ve put off this appointment twice already, weeping before cancelling. I’m resting this week so that I’ll have the fortitude to follow through. Maybe Thursday. Maybe Friday. Because I’m not sure how much time we have left.
I wake up in night sweats, obsessively reviewing her living will & health proxy to make sure I’m not overlooking some obscure instruction.
If I could get to a compassionate state–a state where we didn’t allow our elders to suffer needlessly–I’d make it happen. I’d find a way to transport her. She doesn’t want this anymore. She hasn’t for many years. If I’d foreseen her suffering, I would’ve made different decisions in January 2017.
I’m educated for sure, and kinda cute, and I’m aware that gets me through doors others don’t find readily open. But I’m always a black woman, trying to maneuver through a serpentine, byzantine health system designed to send you on your way as cheaply as possible. My hands are shackled, my head crowned with frustration, my heart stopping now and then as I find myself crippled by panic, emasculated.
Instead I’ll carry this weight of helplessness, of knowing that relief exists but is not offered to me in New York, not offered to my mom, a vibrant, funny, sometimes caustic woman who always did her best and loved me even better. What shall I celebrate today? That tomorrow won’t be July Fourth. And I can get on with it.