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.
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.
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.
–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.
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