(WOMENSENEWS)–My mother is one of more than 100,000 quadriplegics living active lives in the United States today. At one time, the assurance of this achievement was truly implausible for me, stunned and disoriented by the gravity of my mother’s overnight paralysis.
When my family learned that my mom, single and nearing 65, would spend the rest of her life as a quadriplegic following a spinal-cord injury, one of our first trembling thoughts was, “Who will take care of her?”
The answer it turned out was this: A team of incredible personal care assistants.
This is only possible thanks to the devoted work of seven personal care associates, or PCAs, who provide her with round-the-clock care.
My mother’s care team helps with absolutely everything she cannot do. They cook for her and assist her with eating. They bathe and dress her. They lift her several times a day — into and out of the wheelchair — and oversee her daily physical therapy. They drive her to the elementary school where she volunteers, to doctors’ appointments and to get her nails done. They help clean the house, do the laundry and empty the garbage. They oversee her regimen of 20-some pills dispersed morning, midday and night; manage her blood pressure; keep her on a healthy diet; and care for her when she’s sick.
Just as importantly, these women keep my mom laughing. They are her friends when she needs a shoulder to cry on and a voice of encouragement when she wants to give up. They do all of this day in and day out, sometimes working double shifts.
All this for $13.38 an hour.
Minimum Wage Work
Millions of home health aides across the country are doing this work, and most of them–unless privately hired–do so for minimum wage.
Knowing firsthand the demanding nature of this job, my mother, sisters and I have often discussed how we wished we could offer her caretakers more.
But it’s not so simple. The costs of living with quadriplegia are enormous. The average first-year expenses for a quadriplegic are $1,023,924 and $171,808 each subsequent year, according to the Christopher and Dana Reeves Foundation.
My family was in no financial position to afford this on our own, but thankfully, my mother lives in Massachusetts, which has a notably progressive state health care program to cover her home care needs. Unfortunately, MassHealth only pays $13.38 an hour. And this is the problem.
On April 15, thousands of Americans marched for a minimum wage of $15 an hour. Led by unions and social justice organizations, the Fight for 15 brought together low-wage workers and their supporters, from fast-food employees to home health aides, to highlight how anything less than $15 an hour is not enough to live decently on in today’s economy.
It’s not only employees and their families that low wages hurt. It’s also those who employ them and our society at large.
The turnover rate for home care is huge. Low wages are compounded by long hours, work that takes a physical toll, inadequate health care, often nonexistent child care supports and other difficulties.
When a PCA resigns, it’s a stressful loss for the person receiving care–sometimes devastating.
This is intimate work. The aides are, quite literally, never beyond an arm’s length. It takes time to grow comfortable with them, to trust their close care and assistance.
High Worker Turnover
I have seen my mother’s stress and disappointment (sometimes every few months) when a PCA has no choice but to walk away for a job that pays more. Other times they simply burn out. These women are my mother’s eyes. They are her fingers, her arms and her legs. They are also her friends. And it’s not easy to find replacements, not for $13.38 an hour.
This is true not only for Americans with disabilities and their families, but also for those of us watching our grandparents and parents age.
As a “Generation Xer,” my peers and I will see our parents — the baby boomers — transition into the greatest elder boom in history. Every eight seconds, another baby boomer turns 65.
By 2035, 11.5 million Americans will be over the age of 85, more than double today’s 5 million.
The need for professional caretakers, especially home health aides, will soar. Ai-jen Poo, co-director of Caring Across Generations, argues in her book “The Age of Dignity” that home care workers are the only way we’ll be able to meet our aging population’s needs.
All of us want our parents and grandparents to age with dignity. We want to see the same for those we love dealing with disability or illness. But in order to ensure this, we as a society need to value the work that professional caretakers are doing and honor that value in a decent wage.
In the grander scheme of things, $15 an hour doesn’t come close to compensating all of the work that my mother’s caretakers do. I sincerely hope that the gratitude my family tries to show these women can fill that gap. But for now, $15 an hour is a start. Now is the time to support the Fight for 15. Now is the time to show all those caring for our loved ones that we care back.
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