Why Are We Failing Our Caregivers?

Family caregivers and home care workers provide our nation’s backbone of care. Their work needs to be valued.

The caretakers for the fortunes of America’s rich take home a pretty penny for their services. The caretakers for average Americans who can no longer care for themselves most certainly do not.

But caregivers like Karon Hatchett, one of the nation’s 40 million family caregivers, are joining with home care workers to get America to acknowledge the true value of their work. We asked Hatchett, an activist with the advocacy group Caring Across Generations, to share a glimpse of life in her world.

By Karon Hatchett

Activist caregiver Karon Hatchett

My mom and I have always been very close. When I was born, my twin didn’t survive, and my older sister died at 39. So when it comes to caring for Mom, it’s me or me.

Mom came to visit me at my home in Denver in 2008, after she had a stroke. I had a strong network, through my 27 years there and my passion for community theater. Every other Sunday, my artist and activist friends and I would get together to eat and drink and talk about changing the world, not really my mom’s thing.

Mom spent those days with a dear friend, a family caregiver herself. One day, after my mom left, my friend said we needed to talk. It’s time, she told me. I had to accept that my mother needed help.

My mother has excellent health coverage, Medicare plus extra insurance, and we had assumed home health care would be covered. But, as so many other Americans have come to realize, we were wrong.

But like I said, it’s me or me. So I packed up and moved back to Missouri.

I got a job with a local theater soon after I moved back. My boss needed someone who could work long hours on-call, and that worked sometimes. But Mom is my first priority, so I got laid off when I had to miss work to take care of her. I found a more flexible new job, but this new job came with a significant pay cut.

Caregiving, with no acknowledgment of its economic value, takes a heavy toll. You get up, go to work, and pray everything will be alright. You check in on the person who needs your care, make lunch, work, check in again, come home, check in still again, make dinner, and clean up. And then at some point, you collapse.[pullquote]Caregiving, unvalued, takes a heavy toll. [/pullquote]

I know people who’ve become really sick from the stress of caregiving, and I worry about my own health. Who will take care of mom if I get sick? I’m 61 and not getting any younger. Who will take care of me? It cannot always be me, or me.

I’m in the same catch-22 that squeezes so many other families. I earn too much to qualify for Medicaid and too little to afford out-of-pocket care. Should things be this hard?

It’s sad – and mean-spirited – what happens today. We force people to give up what they’ve worked their whole lives for. My friend’s dad was a retired school teacher and dying. His family had to spend down everything they had just to get the care they needed.

Something’s wrong with this approach, here in the richest country in the world.

That’s why I joined Missouri Jobs with Justice and Caring Across Generations, to connect with others involved in caring and to understand the system better. It’s overwhelming. You don’t know what you don’t know.

I could not do any of this without the support of family and friends. You have to have an informal network to make caregiving for your loved ones work, because there just isn’t enough societal support.

Family caregivers like me need respite care support, so that we can take a break once in awhile or run errands without worrying that our parents will be neglected.

We need policies that support in-home caregiving, a better alternative for the people we love and an approach that costs the states where we live less than what nursing homes cost.

And, maybe most of all, we need to value the work caregivers do. We need better training and wages. Without this support, the quality of care suffers, and we see a vicious cycle for everyone.

So much work remains to be done. But I know that if we raise our voices and work hard together, we can make change happen. Together.