How this caregiving project was born: a personal and universal story

For the past several years, I've been writing about the generations, particularly how baby boomers are changing the workplace, housing and the way society ages.

But there seemed to be a broader story that needed telling. As in my own life, many of my friends and colleagues were seeing their lives upturned when their aging parents started having health problems.

Smart and capable people encountered doctors who didn't talk to each other and long waiting lists for assisted living facilities, where granite countertops and fancy artwork could seem more of a priority than well-trained and well-paid staff. Each change in their loved one's condition required starting anew and dealing with a new level of bureaucracy.

Many missed work or took time off without pay, sometimes for years. They dipped into their own pockets or bankrupted their parents to pay for assisted living or memory care. Solving each intermittent crisis fell on the family — while also juggling careers, child-rearing and their own finances.

When Star Tribune editors put out a call to apply for the O'Brien Fellowship in Public Journalism at Marquette University, I jumped at the chance to try to document this increasing burden on families.

Despite decades of talk and research about an aging America, every facet of society has failed to adequately prepare for this future — including, in many cases, our elders themselves.

Family caregivers are essential to their parents' health and safety, yet they face a mind-numbingly complex world on their own, without the big money and powerful lobbies that back the medical system, health insurance companies, senior housing operators and corporations.

Over the last eight years of my dad's life, he underwent surgeries, "cutting edge" procedures and rounds of chemotherapy and radiation as he was slowly dying from late-stage lung cancer. It crushed his quality of life, and put an enormous strain on my mother, his main caregiver, and my two brothers who lived less than a mile away.

My mother's insight into my dad's health and her own stress were roundly ignored — even when I had her write down the words "palliative care" and give it to my dad's family doctor. She left that appointment with another prescription for my dad and a pamphlet on depression for her. No end-of-life discussion, no talk of connecting her with the supportive services that were widely available in her community.

Not long after we buried my dad, we brought my mother home from the hospital for hospice care. We discovered then that her health care directive was inadequate and her will was years out of date. We witnessed an ineffective handoff from the hospital to hospice, a focus on treatment rather than comfort and a basic lack of understanding of her needs — and ours.

Meanwhile, my brothers and I spent four months doing the deeply rewarding, yet physically and emotionally taxing, work of being with her each day until her death.

Many families I've met are facing much more challenging situations, especially those whose loved ones have dementia. The care they need isn't covered by Medicare or private insurance, as my parents' care was. And their caregiving work has few job protections or any guaranteed paid leave.

Modern medicine has extended life, but society has failed to keep up.

In less than a decade, the first of 76 million baby boomers — those now most likely to be informal caregivers — will hit their 80s. With shrinking family sizes and tighter restrictions on immigration, the number of paid and unpaid caregivers will shrink substantially. It adds up to a triple threat.

"The thing that gets forgotten," caregiver Angela Byrne told me, "is, who takes care of us? Who picks up behind us when we drop all the balls?"

There's no one fix or easy solution. As the year unfolds, and I write more stories on family caregiving, I hope you'll share your stories about what's working and what needs more attention.