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Caregivers

Earl Stith spends Christmas day last year with his nephew Mike Stith, who is his caregiver, in Walton, Kentucky.

Photo courtesy of Mike Stith

I came across this letter anonymously submitted to AgingCare.com, an online support group for caregivers:

“I am a middle child with four sisters. I am a widow. My children and grandchildren live in St. Louis, and my mother lives in Phoenix. I have taken care of my mother for the last eight months, away from my immediate family. I have done the very best I could taking care of my mother, but it has taken a toll on me physically and emotionally. I lost 25 pounds, couldn’t eat, was depressed, and had to have surgery so I could try to eat again. All of this made me realize I can’t do this anymore. The sisters are sending guilt- and shame-filled texts to try to change my decision, but I can’t. They are being so mean, saying I am being selfish. Not sure how I can deal with this. I would really like some advice.”

The letter struck close to home.

For 26 years, my parents cared for our elderly aunt in their home. They took turns with my father’s older brother and his wife. When you watch your parents, in their 70s, struggle to care for someone in her 90s, it opens your eyes to the massive gaps in elder care support.

And the caregiving crisis is about to get substantially worse.

About 34 million Americans are providing unpaid care to an older adult, often a family member. More than 75 percent of these caregivers are women.

“They are individually bearing most of the burden of one of America’s most pressing societal challenges: how to care for a population of frail elders that is ballooning in size,” Grace Gedye wrote recently in Washington Monthly. No one is prepared to handle the massive influx of demands the aging boomer population will add to an underfunded and incomplete government system, straining overburdened family caregivers and an inadequate health care workforce.

Between half to two-thirds of seniors will need some kind of long-term care, which is not covered by Medicare, and only partially covered by Medicaid, under specific conditions. The strain that the aging boomers are expected to put on Medicaid, and on their family members, is unprecedented.

And yet, there’s little public policy talk about it.

Lawmakers must begin seriously grappling with the issue, and family members need to have honest conversations about care and finances before a health crisis hits.

Mike Stith, 64, of Edwardsville, knows all too well the toll caregiving can take personally. He was the full-time caregiver for both his parents for years before they died, having taken an early retirement when his mother got sick with cancer. He took over making major decisions for his parents, managing their health issues and helping with all the basic tasks of everyday life. And when his mother passed away and his father later moved in with Stith, it became a 24-hour, 7-days-a-week responsibility.

“You change your whole life,” he said. Stith now helps care for his elderly uncle in Kentucky, and spends one week every month there to keep up with his needs.

He says he ended up in the caregiver role by default — no one else stepped up to do it. He hasn’t spoken to his brother since 2015 because he was so hurt by how he checked out of their parents’ situation.

“People think someone else will take care of it,” Stith said.

Caregiving for a relative is one of those family situations in which everyone has an opinion — except the opinion that they should be the one providing the care.

If someone else has been doing the work, like in the case of the overburdened letter writer, the bystanding family members should limit their comments to two simple phrases:

“Thank you,” and, “How can I help?”