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When Caregiving Leaves Nothing Left
Writer Sandra Tsing Loh spoke last week on the NPR national call-in show Talk of the Nation about a provocative piece she had written for The Atlantic Magazine. It was about the heavy financial and emotional cost of caring for her elderly father and stepmother. It was already a pretty sobering conversation, which is what you might expect since her piece was subtitled "Why Caring for My Aging Father Has Me Wishing He Would Die."
Then Yvonne called in and said:
"In 2000, my mother's heart suddenly stopped. And I took care of her for 10 years, and that was total care. That means bathing, making all of her meals, changing her diapers. I also work in long-term care. I'm a registered nurse. And on top of that, my youngest daughter gave birth to a child that she really couldn't take care of herself. So I was doing, wow, all of that. And I got to tell you: There were times I thought I was going to lose it. I could not — I felt so angry, and I'm ashamed of that."
I recognize that stories like theirs are not the whole story.
I just attended a beautiful funeral service for the father of a friend of mine. And one of the most powerful parts of the day — along with funny and heart-warming remembrances of the father — was the acknowledgement of my friend and her family for making her dad so much a part of their lives.
At the funeral, my friend's husband told the story of how she moved her father into their home, bit by bit. A piece of furniture would show up here, a suitcase there — until there was nothing left for her father to do but get comfortable and settle in.
I have another friend who took an open-ended leave from her job, moved her three young children back to her childhood home and persuaded her husband to commute to his job in another city in order to see her mother through a serious illness — and to help run her mother's small business until her mom could get back on her feet.
And when I marveled at what she'd taken on, she told me, "When my mom's not OK, I'm not OK."
Can I just tell you? That is real.
But the story Sandra Tsing Loh tells in The Atlantic is also real. Her father was once so frugal — some might say mean and cheap — that he refused to turn on the heat or celebrate Christmas. But when he became infirm in his 80s, along with his dementia-suffering second wife, Loh and her siblings saw no choice but to arrange for care topping $10,000 a month. That's on top of her father's health crises, daily phone calls demanding Viagra, and the stepmother's erratic and sometimes violent behavior. All of which leaves Loh afraid that the final years of her father's life will leave her with nothing to take care of herself — or provide for her own children.
The guilt, the anger and the fear — this is not just her story.
What's also behind that fear? Demographic reality: People over the age of 85 are the country's fastest-growing group. And their numbers are projected to double by the year 2035. And Loh pointed out that the next wave is coming: 77 million of the youngest baby boomers will be turning 70 before the end of this decade.
This is, in part, what underlies the churning in Washington and on the campaign trail about Medicare, Medicaid and so-called Obamacare and Romneycare: the idea that you could do everything "right" — save money, stay out of trouble, educate yourself and your kids — and you can still end up in a precarious and even perhaps degrading condition.
But good luck trying to figure out how what they are talking about out there connects to your life — or Sandra Tsing Loh's, or her dad's, or the caller Yvonne's and her mom's lives. Increasingly, it seems our political leaders are talking among themselves, and we are left to commiserate and cry with each other.