Things began to unravel on the day after Christmas 2016.
I came home to my native North Carolina for the holiday, to the house my then-husband and I lived in before I got a job in New York. Midday, mom stood to stretch her legs. She fell backward in her chair, gasping for air.
Life changed for both of us forever at that moment.
In the emergency room, routine triage shifted to panic. Mom’s blood pressure was 230/190. They put her in a bed and started an IV. An army of nurses with a parade of drip bags frowned at the vital sign monitor.
A medication pulled her from the brink of a stroke. She was prepped for a chest X-ray. She resisted. We found out why. No fan of modern medicine, mom dismissed the lumps as mastitis. It was Stage 3 breast cancer.
The next few weeks were a blur. Doctors. Conflicting prognoses. Painful biopsies. Throughout, my mother — weak, worried, pale — assured me things would be OK. A good mother soothing her frightened child.
A frail 79, mom couldn’t live alone anymore. Most people avoid thinking about their mortality, and so she’d made no plans for this stage. An only child, I had two choices. Liquidate everything, put her in a home, see her infrequently on trips back to North Carolina. Nursing home neglect killed my dad a decade earlier. It could happen again.
Or bring her with me, to a place she’d never been, and care for her myself.
We drove over the George Washington Bridge on Feb. 22, 2017 with my car stereo blasting “New York State of Mind.” Mom said she’d never seen so many beautiful lights.
For two years, I worked full-time while fighting the physical and emotional deterioration of my mother. I was her nurse, her accountant, her cook, and her counselor.
The cancer treatment caused mom immense pain. She moved infrequently. Muscles atrophied. She grew too weak to stand. I couldn’t leave her alone and helpless during the day anymore. Physical therapy was excruciating. Through tears of pain, she tried to rebuild her strength until it became too much for both of us.
Each night, I lifted her from her wheelchair, to the bedside commode, then to bed. She’d kiss my forehead and tell me God’s watching over us. I’d tuck her in and go to my room. I’d lay in the darkness, fighting to stay calm, the whoosh of my heartbeat drowning out the sounds of Washington Heights traffic outside.
“I don’t know how you do it,” my friends said.
Neither did I.
I paid a private agency $10,000 to get mom qualified for Community Medicaid. The director said they’d take care of the paperwork, prepare her lifetime of savings — a sad $70,000 — and find social programs to help us. Two months tops, they said, and we’d have 24-hour care.
Most of the legwork was on me. Power of attorney, medical proxy, certificate of disability, irrevocable trust, asset liquidation. My emails to the agency went unanswered. The attorney replied in one-word answers on the phone.
Months went by. We paid $300 a day, out of pocket, for an aide while I worked. They showed up hours late — if at all. My supervisors called a meeting to talk about my attendance. You need a plan, they said. I told them I was trying.
While I was again on unpaid leave, I called the agency each week about the Medicaid application. The director ignored me. I called Medicaid directly. They told me they’d contacted the agency several times for proof of a pooled income trust, but were ignored.
An explosive phone call later and — after a seven-month wait — mom’s application was accepted. A 24-hour aide began a few weeks later. By then, I was unemployed. More than half my mom’s savings was gone — spent on rent, equipment not covered by Medicare, medications, wheelchair-friendly transportation.
I was one of the 44 million Americans — mostly women — providing unpaid elder care, according to the U.S. Census Bureau. Many of them leave careers, experience depression and anxiety, and develop serious health problems of their own while caring for a chronically ill family member.
The number is not falling. By 2030, 18 percent of the nation will be 65 or older, according to Pew Research. We’ll need between 5.7 million and 6.6 million caregivers for an older population growing by 10,000 every day, according to AARP. Many will be women sacrificing careers, resulting in an estimated $3.3 billion loss for American businesses.
What if, instead of rending families to shreds to ensure seniors get quality health care, it was there automatically for everyone? What if elder care no longer meant self-impoverishment, acres of paperwork, and possible nursing home neglect?
There are many things possible with universal health care. The New York Health Act — ensuring every state resident has health coverage, including long-term care for the elderly and disabled —may be a pipe dream. While experts say most people will pay less out of pocket for premiums and co-pays, it still requires a steep tax increase. Delays, shortages, job losses. There are many pitfalls.
But what if it means care without losing everything? Or aging with dignity? What if getting sick didn’t have to bankrupt people fighting for their life, even if they’re insured? Or if mental health care for everyone meant less addiction and fewer suicides?
It’s worth trying.
The author is a reporter with The Riverdale Press.