Family Caregivers, the Future, and Now
By WomanInWashington on June 05, 2014
My friend and colleague in the fight for family caregivers, Janice Lynch Schuster, recently had a conversation with her children about what may happen when she becomes older. It went like this, as Janice wrote in Fierce Urgency of Now: Family Caregivers and the Future that is Upon Us for the blog Disruptive Women in Health Care:
Just before Mother’s Day, I was a guest on an Al-Jazeera news segment focused on the challenges of aging in America. It was my first-ever news appearance, and, later, I proudly showed a recording to my adult daughters when they came by to visit. The segment included a look at how elders are navigating the shoals of old age, sickness, and financial insecurity—a future millions face, and all of us deny.
One segment featured a mid-life African American woman who had abandoned her retirement dreams to care for her mother, who has Alzheimer’s. As the woman fixed her mother’s wisps of hair, both daughters turned to me and said, “We are never doing that. You need to tell us what you want.”
“I would never want you to do that,” I replied—abandon their lives to maintain mine—but the odds are, they may have to. If they cannot care for me (or if America continues to skirt changing public policies that affect the lives of working families, family caregivers, and older adults), I will likely spend a few years of my late old age in an institutional care facility. If I live past 80, I am likely, like half my peers, to experience signs and symptoms of cognitive decline. I will simply not be safe at home and alone.
Janice is right - our current policies still assume multiple generations live together, or at least nearby, and that someone is always home and available to care for others, with enough money around to support the needs of both the caregiver and the care recipient. Yet, how many households does this accurately describe? We're looking at two equally problematic choices - either our elders have to leave their homes and be cared for in larger, residential nursing facilities, of varying quality, or cared for and supported by us, likely at the cost of our livelihoods, and our own retirement security.
The challenges we confront as mothers will be almost identical to the ones we face as our parents, and we ourselves, grow older. We will need better ways to stay attached to the work force, yet the freedom to slide away to show up in the doctor's office, or the hospital, or help an aging parent adapt his or her home to new physical limitations. We will need the ability to save for our own retirement, and help our partners, spouses, or in-laws manage to live as independently as possible through theirs. We will still need accessible, affordable, high quality child care, so that we can turn our attention away from our children while we focus on the needs of our parents. Or, our adult children will need it, so they can devote some attention to us. And we will all need, most likely, well-trained, well-paid, and healthy direct care workers, to allow us to age in place for as long as possible, and to care for us if we must leave our homes and be cared for elsewhere.
So, it's worth it to become an activist for practical public policies for care right now - support paid family and medical leave, in Congress right now as the FAMILY Act. Support the Health Families Act, which would implement a paid sick days program. Push for better child care, regardless of income level, with flexible hours so parents can work non-traditional jobs, to juggle around their family care obligations. And raise the minimum wage, so that our direct care workforce can sustain themselves, and show up for their own check ups, pay for their own medicines, and care for their own family members when they need to. It's only a matter of time until we switch from caregiver to the one who needs care. As Janice says:
For that, we will need family: first our spouses, and then our adult children and their mates. Most often, for the hands-on work, our daughters will step in. The trouble is that our daughters, if we have them, simply will not have the time or resources to step in with the intensity and 24-7 attention we will need (nor should they have to, nor would I want them to). The recession, coupled with significant college debt, has hammered Millenials like my girls, who will not be able to take time off from work to take care of me. I myself will not have enough savings to take care of myself—my own choice for taking years away from full-time work to raise a large blended family of six children. (And for not realizing when I was 21 that I should start saving for retirement, thinking in those days that I was, in fact, forever young.)
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