My Mother Died Waiting For Access To In-Home Care
Medicaid provided my mother with hospice care eight hours a week, but she needed round-the-clock in-home care.
September 22, 2021 at 5:30 pm
Opinions are the writer’s own and not those of Blavity's.
Most home care workers are Black and brown women who are drastically underpaid and lack adequate benefits. As a result of this, many are leaving the profession and waitlists are increasing. Family members have no other choice but to care for their aging parents or ailing children themselves.
Ironically, unpaid caregiving most often falls to women of color. It’s a story I know firsthand. Caring for an aging parent at home is exhausting and heartbreaking. I was my mother’s only option, and I could only do so much.
Following a devastating stroke last year, my mom was put on the waitlist for the only home care agency she could access in Georgia. Weeks and weeks went by and she never got off that waitlist. My mother passed away on August 16, 2021. She would’ve turned 80 later this month.
I phoned the agency every week and the answer was always the same: They hadn’t forgotten about us, but didn’t have anyone who could come. I never expected to feel so alone in this journey caring for her, or for it to turn out as badly as it did.
My mother had her stroke in August of last year. While in the hospital, she fell and suffered a traumatic brain injury, further limiting her mobility. When she was released from physical therapy, I moved both my parents into an assisted living facility. They had been married for nearly 60 years and couldn’t bear to be apart.
They were fine until Thanksgiving, when both were hospitalized with COVID — the fate of many elderly people in long-term care facilities. Fortunately, they both recovered. After they were discharged, I moved them in with me. But over the next several months, my mother’s dementia progressed and her needs exceeded the care my father and I could manage.
This past May, we placed her in a memory care nursing home. Often when I visited her, she would still be in her pajamas because no one had bothered to dress her, wash her face or comb her hair. The staff didn’t seem to have the time or training to properly care for the residents. I couldn’t continue to watch the neglect of my mom’s basic needs. Within a month, we moved her back into my house so she could receive the individual attention she required.
Medicaid provided my mother with hospice care eight hours a week, but she needed round-the-clock in-home care. That was when I reached out to the only in-home care agency we could access, and wound up on a waitlist. Like many other families needing in-home caregivers, our only option was to wait.
With my father still experiencing the effects of long-term COVID, it was up to me to do almost everything for my mom. I rarely got more than six hours of sleep a night. Occasionally, my body shut down and I just couldn’t get up because I was so exhausted.
When I did have some free time, it was rushed — I ran through my grocery shopping so that I could get home to them. Everything — paying my bills, keeping up chores, maintaining my car — had to be put on the back burner as my priority became preparing my mom’s meals, keeping up with her medications and bringing her to appointments. I’m 59 and have medical issues of my own, but my needs had to come second.
Help was so desperately needed, and I couldn’t give her the care that she needed on my own. What I realized through talking with friends is that my story is not at all uncommon. Across America, there are over 50 million unpaid caregivers, and the majority are women.
I knew that nursing homes lacked proper resources, but I didn’t expect the home care industry to be so underfunded. It’s no wonder the home care agency was so short-staffed, when Georgia’s home health care workers are paid just $16,000 a year on average. Women make up 87% of home care workers, with more than half being women of color. Black and brown women are holding the weight of an entire industry on our shoulders.
The Biden Administration’s economic plan and the Better Care Better Jobs Act would improve multiple things for the caregiving industry: It would increase workers’ pay, and improve their training and benefits. Congress is now debating major cuts to President Biden’s proposal, but they should include as much as possible to address the needs Americans have for quality, affordable home care. The full $400 billion in-home care would create thousands of new, stable caregiving jobs for people who will help our parents age with dignity and grace.
Without in-home caregivers, there is never a break when you are caring for an ailing loved one. In the end, I never did get any help with my dying mother’s care during the final months when her needs were the greatest. I would do anything to have spent her final months without feeling so burned out.
Ironically, after her death, the home care agency called back to schedule a 90-day follow-up. I told them, “You’re too late, she's already passed.” They came anyway for an evaluation to assess my father’s needs. After the assessment, the nurse told us the same dreaded words we’d heard so many times already: They don’t have staff.
So we’re back on the home care waitlist, this time for my 82-year old dad.
With 10,000 Americans turning 65 every day and 88% of Americans saying they want to age in place, the shortage of home care workers is reaching a crisis point. If we don’t invest in-home care, more women of color will bear this labor and more elderly people will find themselves in my mother’s position, waiting for care that never comes.
Marshalla Cofer lives with her father in Sharpsburg, Georgia.