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This was my mother. To the right, she’s pictured one of the three times in six years that she dined out at a restaurant. It was early May 2012, and we were in the strip center where she’d just seen her doctor. I shot the photo on an old cell phone, leaving the final image blurry and grainy and rushed. Back then, I didn’t realize how meaningful it would be to me this Mother’s Day.
I can count on one hand the number of times that we dined out together as a family, after she moved from far-away Paris, Texas to a mere 11 miles from my house.
Her skeleton ravaged and twisted by rheumatoid arthritis, there were profound limits on her mobility that worsened as she aged, eventually requiring her to rely on a gurney for transport. The chair in the photograph came to sit empty most days. Meals became more challenging, both the consumption and digestion of them. She lost almost all of her teeth and had to have a suprapubic catheter through a stoma in her stomach wall. She fought multiple kidney stones – including one described by her surgeon as being “the size of a hen’s egg” – and went septic multiple times, landing in ICU three times.
But still she’d come back, her body resilient and her mind as sharp as a tack.
Her primary residence during those years was a small, rural nursing home. The vibe was easygoing and an ER was nearby. Shortly after she arrived, and due to the extent of her disability and the state of her overall health, my mother went through a process called “asset spend down” in order to qualify for Medicaid. We simply could not afford the thousands of dollars a month required for her care, let alone her mounting medical bills – even with Medicare. For an independent-minded, middle-class woman from a family that had never taken a cent of what she called “welfare,” this was a process fraught with anxiety and self-loathing. She didn’t want to live on “the government dole.”
Live, however, she did.
It wasn’t easy. Working with an eldercare attorney, we had to account for every expense, every detail, every dime to get her onto Medicaid and then report back each year every significant detail of her cash flow. We also had to deal with denials of coverage. On multiple occasions, private companies working on behalf of Medicare/Medicaid denied her coverage for ambulance transport. They felt that we should fold up her badly contorted body into my car and drive her to the hospital or doctor rather than using the doctor-recommended gurney and ambulance. They felt that a woman who was now only allowed a meager $60 in monthly spending money, per the government, should pay a local ambulance company thousands of dollars. It took me (as her legal proxy), representatives from U.S. Sen. John Cornyn’s staff, and two judges to clear her name.
Yes, judges had to intervene. The stress and indignity of it all was, in her words, as bad as any surgery or septic shock experience she’d had.
On multiple occasions I had to file complicated appeals, collect doctor’s statements, and craft appeal letters detailing why she deserved coverage. In the end it all came down to a problem with how her account was being billed. Even though the process was tension-filled, we recovered.
She and I? We learned resilience together.
As is the case with all eldercare stories, the end eventually came. For us, it was late last August. Her last hours were not a series of tender scenes out of a tearjerker movie. It was horrific, not at all a gentle passage into that goodnight. But leave us she did, finally at peace.
Mother’s Day looms now, my first without her. As I work through my grief and memories, I catch stories about what Republicans in Washington think we should do to care for elders and other people with disabilities. I also find myself revisiting my darkest hours with my mother and wondering: “Could it have been so much worse?”
Yes. It could be worse. Not for my mother and I, because our time together is over, but it could become worse for families like ours.
Early reports indicate that the bill that the House of Representatives passed this week puts a cap on long-term Medicaid spending. Over time, this will lead to a widening gap between costs and funding, leaving people like my mother potentially endangered. I’m not surprised this passed. Fresh from “walking my mother home,” to riff on the words of spiritual leader Ram Dass, I’m sensitive to what lies ahead for Americans and our financial resources, especially as Baby Boomers age. Medical technology and intensive daily personal care helped extend my mother’s life, and Medicare/Medicaid funded it.
But can we realistically do that for everyone? And if we cap or draw down spending, who is most impacted?
The answer to that first question is a philosophical question that we Americans haven’t begun to parse through on a massive scale. We don’t need to take casual funding swipes like the one made in Congress this week, however. That’s irresponsible.
The answer to the second question? That’s simpler. There is no doubt that the people most impacted will be the “least among us:” elderly and disabled people of limited means and, by extension, the hard-working, underpaid women and men who serve them daily as nurses and nurses’ aides.
Yes, buried beneath the talk of dialing down funding and harming middle-class elders, we possibly are putting professional, working class people’s paychecks on the line, too.
There’s been much talk in recent days about the loss of coverage for pre-existing conditions. Save for advocacy groups like AARP, there hasn’t been a lot of attention paid widely to the impact of this bill on elders specifically. It’s time to change that.
I don’t have easy answers for the hard questions we’re facing. I do know that, for all the talk about our being a nation founded on Christian principles, there is nothing at all Christ-like about members of Congress intentionally under-funding Medicaid and then throwing a party about it with the president in the Rose Garden.
Frankly, as much as I will miss my mom on Mother’s Day, I’m thankful she didn’t live to see this threat to the very system that supported her, imperfect though it may have been while she relied on it.