All morning on a cloudy summer Tuesday, poignant stories of love, courage, and selflessness fill the air at Suffolk University Law School in Boston. But the subject today isn't law. It's caregiving, encompassing all the small and large acts of kindness and support that families and friends perform for loved ones in need.
"I took care of my mother - I was her nursing home," one woman tells the nearly 100 people who have come to this Caregiver Town Hall Meeting to consider one of the biggest social and financial dilemmas the nation will face in coming years.
Other participants echo her comments. "I've been caring for my wife for seven years," one man says. Another tells of shuttling between Massachusetts and Florida for seven years to help his ailing parents. A wife talks about her six years - and counting - caring for her husband.
And so the stories go.
As members of the audience recount their private dramas in even, matter-of-fact voices, video cameras whirr. They are recording the event for a PBS special to be broadcast next month in Boston. More than a dozen similar events around the country, sponsored by a foundation called And Thou Shalt Honor, will culminate in a national forum in Washington next winter, designed to catch the attention of policymakers.
To sit in this lecture hall for nearly four hours, listening to these accounts, is to glimpse the love and compassion that drive and sustain these people in their often-isolated routines. Their perspectives also hint at the magnitude of the need for help and solutions.
Americans now have more parents to care for than children, making caregiving a huge healthcare and workplace issue for baby boomers and their families.
By one count, an estimated 27 million family caregivers contribute more than $257 billion a year in unpaid services to the American economy. That doesn't count the money many spend out of pocket. Nor does it measure the wages and pensions they lose when they reduce their hours or quit their jobs to help spouses or family members in need.
Caregiving challenges take other forms as well. "My sisters and I were hardly speaking for months," says one woman whose mother was diagnosed with Alzheimer's. "I thought I was doing the right thing for my mother, but my sisters disagreed."
In other families, siblings may refuse to help, leaving a lone caregiver feeling overwhelmed. "I took care of everything," a woman says. "I thought, no one can take care of Mother better than I can. I had a meltdown."
No wonder specialists here urge caregivers to reach out for support from family, friends, and others who can offer respite care. One expert offers this advice: "You can be the D.O. - the designated one - but you shouldn't be the O.O., the only one."
Yet professionals warn that the United States faces a crisis in finding qualified home health aides. With wages averaging only $18,000 a year, many aides must find a second job or change fields.
Caregivers who work face challenges of their own. Already one-quarter of workers are caring for elderly relatives or loved ones, the Family Caregiver Alliance reports. But some don't dare take time off, even if their company's policies permit such absences. They fear being marginalized by unsympathetic managers.
"We must make elder care as legitimate as child care," one participant says. Flexibility is key. Companies with policies for parents with young children can modify them for elder care.
Who will care for the caregivers? Who will pay for respite care? Who will coordinate and simplify the current patchwork of fragmented services and programs across the country?
As experts on the subject search for answers to those questions, they emphasize the value of sharing real-life experiences. Statistics can be useful, but the stories of individual families give the issue a human face and a sense of urgency.
These stories also illustrate the universality of the subject, says Dale Bell, executive producer of a video that will be aired nationally next spring. "Chances are good," he notes, "that every person either is a caregiver, a care-receiver, knows a caregiver, or will become one at some point in the future."