We were a young couple when we first found out Lauren’s mom, Adele, was diagnosed with younger-onset Alzheimer’s, a disease that affects up to 5% of the more than five million Americans living with Alzheimer’s.
It took her as it takes so many — bit by bit, day by day, slowly robbing her of her thoughts, her memories and those corny jokes she loved to tell.
As part of her care team, we learned what it meant to parent a parent as the illness cheated Lauren’s mother of her ability to do for herself the daily tasks we take for granted, from eating to bathing to dressing. We lived those early years in the shadows in a way — it was a time when people quietly whispered about the disease.
And it was through our caregiving experience that we learned that government and most employers provide people — especially young people — with little to no caregiving resources. We learned the ugly truth that the United States is the only industrialized nation without a national paid family leave policy to help people balance care for older loved ones while working.
President Joe Biden’s $1.9 trillion stimulus proposal, currently before Congress, includes an expansion of paid leave, and would make at least two weeks of paid leave mandatory for every American employee, “plus an additional 12 weeks to take care of children or family members for coronavirus-related reasons at two-thirds of their pay,” the Washington Post reported. That’s a critical first step, and Congress must pass it — and make it permanent.
In 2012 we founded the non-profit HFC (which stands for Hilarity for Charity) to help close the existing gap in support for family caregivers, as well as to educate young people about living a brain-healthy lifestyle, and activate the next generation of Alzheimer’s advocates. In 2019, HFC awarded more than $1 million in grants that provided 50,000 hours of in-home respite care for 371 families. These resources were a lifeline for these families but obviously the need is far greater.
Today, the Covid-19 pandemic has exposed the care crisis in America and shown how desperately we need policies like paid family and medical leave if we are to rebuild the nation’s economy. Yet, the last pandemic relief package Congress passed, in December, left out these essential provisions for all caregivers, from parents to caregivers of older adults.
As a new presidential administration and a new Congress chart a path for long-term economic recovery, now is the moment for us to yell and scream for the relief needed by those of us working day and night to care for our parents and the other people we love.
The millennial generation — already the poster children for high debt and living paycheck to paycheck — is hit particularly hard when their parents have Alzheimer’s or related diseases.
According to the non-profit advocacy group UsAgainstAlzheimer’s, nearly two million millennials provide care for a loved one living with Alzheimer’s or a related dementia, and experience high levels of emotional distress and disruptions to their ability to work — 14% have left the workforce entirely due to dementia caregiving responsibilities. Meanwhile, 40% of employed caregivers in this generation say they or someone at home has had to borrow money or go further into debt caring for a loved one.
Even as our family struggled with our mom’s diagnosis, we know we’ve been luckier than most caregivers in our situation. Our family was in a position that allowed us to care for Lauren’s mom without worrying about making difficult financial decisions. But with almost 80% of millennial caregivers experiencing emotional distress, we know that so many need more support.
We joined the Paid Leave Alliance for Dementia Caregivers, convened by UsAgainstAlzheimer’s, because we know paid leave could be a lifeline for the caregiver community, and especially its younger people, who need more of a foothold as they struggle to navigate care and work at a critical time in their lives.
Congress and the Biden administration have an opportunity to reshape family caregiving by making paid family and medical leave central to building a stronger and family-focused economy. We urge they them to:
–Include families caring for older adults, not just parents caring for children, when they consider paid leave benefits, flexible schedules and job security for employed Americans;
–Provide relief for at-home caregivers who have had to leave jobs or take lower-paying jobs to care for their loved ones at home due to closures of adult-day programs;
–Provide households with stimulus payments big enough and for long enough that caregivers can make good choices about how care is provided without the worry of settling for poor or inadequate services;
–And establish flexible workplace policies to let employed caregivers accompany their loved ones to medical visits, including visits related to clinical trials and life-saving research.
Adele, Lauren’s mom, was a teacher for 35 years. She taught her young students and her children what it means to belong to a community. She taught us how to use our voices and actions for good.
And she taught us how to care for the people we love — and also how important it is to show up for them.
Her children and the generations of children she taught carry those lessons with them today. It’s time for elected leaders to do the same.
