Editor’s note: Christina Keys, from Vancouver, Washington, is a Care Fellow at Caring Across Generations and the founder and CEO of Keys For Caregiving. She cared for her mother Patricia Keys and is featured in the film The Love of Care about the challenges facing caregivers. This article was originally published by OtherWords.org on October 8, 2024.

Christina Keys

My mom had a successful career, earned a good salary, and banked a healthy pension. She set me up to chase my own American dream. I got a great job and purchased my first house at 30.

But no matter how successful we are, we can all fall victim to this country’s ailing care economy.

One morning, my mom — then 62 and healthy — called me, chatted about the new hardwood floor she’d just laid herself, and told me about the fun she’d had at the movies the night before. “I’ll talk to you later, honey, I love you,” she said as she hung up.

Later that day, I got a call from the hospital telling me she’d had a massive stroke and wasn’t expected to survive.

Significantly disabled, my mom lived another nine years. I quickly discovered that Medicare covers minimal in-home care costs, with high bars for eligibility that can last merely weeks. Medicare will only pay for one medical device, such as a wheelchair or home hospital bed, every five years.

Medicaid and the Affordable Care Act provide some funds for in-home care for people at or near poverty. However, eligibility and benefits need to be dramatically expanded. Additionally, between 1.5 million and 2 million people fall into the Medicaid Coverage Gap because their states refuse to expand access to Medicaid.

So as an unpaid family caregiver, I had to learn to become an Occupational Therapist, a Physical Therapist, a nurse, a medicine manager, and a case manager overnight — all while having to work full-time to pay all my own bills as well as my mom’s.

Christina Keys and her late mother, Patricia Keys. (Photo courtesy of the author.)

The experience was devastating. I lost my job, my home, my health, and most of my spirit — along with over $800,000 in savings and lost wages. I ended up working five part-time, low-paying jobs that allowed me the flexibility to rush to my mother’s side as needed. I sold off everything I owned, piece by piece, to pay my bills.

The National Institutes of Mental Health has documented pervasive negative impacts on caregivers, such as financial and physical stress and increased anxiety and depression.

When I finally got myself to a doctor, she said my body was shutting down — and I might not survive another six months if I didn’t change the way I was living.

Nearly 106 million people in this country are unpaid caregivers. As Americans live longer, most of us will eventually either need care or will be caregivers ourselves — or both. Our current system can’t cope with the existing need, which will only worsen.

There were some temporary improvements to the “care economy” — including child care, care for people with disabilities, elder care — in response to the COVID-19 pandemic. But many of these have expired.

State and federal lawmakers must make robust investments in Home and Community-Based Services, expand eligibility and benefits for homecare in both Medicare and Medicaid, and provide investments for family members to be paid for the care we provide. Requiring Medicare cover in-home care would be a welcome start.

Anything less could prove catastrophic to our families, communities, and economy.

We also need access to the polls to fight for these critical changes. From my mother’s hospital bed, she was insistent that one of the most important things she could do was to make her voice heard through voting.

Those with disabilities need accessible polling places, drop-off locations, ballots, and mail-in voting options. One in four Americans have a disability and one in seven of those reported obstacles to voting in 2022. Leading up to the 2024 election, 14 states have restricted access for voters with disabilities.

With a national care crisis looming — and for families like mine, already underway — we need to reinstate and expand assistance to families dealing with disability and caregiving.