Lauren and Seth Rogen: We have to yell and scream for paid family and medical depart (opinion)
We were a young couple when we found out that Lauren’s mother, Adele, was diagnosed with Alzheimer’s at a younger age, a disease that affects up to 5% of the more than five million Americans living with Alzheimer’s.
It took as it took so many – bit by bit, day after day, and slowly robbed her of her thoughts, her memories and those stupid jokes that she loved to tell.
As part of their care team, we learned what it means to raise parents as the illness has cheated Lauren’s mother of her ability to do for herself the daily chores that we take for granted, from eating to bathing to getting dressed . We lived in the shadows in a sense these early years – it was a time when people were whispering quietly about the disease.
Through our nursing experience, we have learned that the government and most employers provide little to no care resources for people, especially young people. We have learned the ugly truth that the United States is the only developed nation without a national paid family vacation policy that helps people compensate for caring for older loved ones while at work. President Joe Biden’s $ 1.9 trillion stimulus proposal currently being presented to Congress provides for an expansion of paid vacation and stipulates that every American employee must have at least two weeks of paid vacation. “Coronavirus-related reasons at two-thirds of their salary,” reported the Washington Post. This is a critical first step, and one that Congress must pass – and make permanent.
In 2012, we founded the non-profit HFC (Hilarity for Charity) to fill the existing gap in supporting family carers, educating young people about brain-healthy lifestyles, and energizing the next generation of Alzheimer’s advocates. In 2019, HFC made more than $ 1 million in grants to care for 371 families for 50,000 hours of rest from home. These resources have been a lifeline for these families, but obviously the need is far greater.
Today, the Covid-19 pandemic exposed the supply crisis in America and showed how urgently we need measures such as paid family vacation and medical leave to rebuild the country’s economy. However, the last Congressional Pandemic Relief Package, passed in December, omitted these essential provisions for all caregivers, from parents to caregivers of older adults.
As a new Presidential Administration and Congress point the way for long-term economic recovery, now is the time for us to scream and scream for the relief that those of us who work day and night to care for our parents and the need caring for other people we love.
The millennial generation – already the poster children for high debt and living paycheck to paycheck – are particularly hard hit when their parents have Alzheimer’s or related diseases.
According to the charitable advocacy group UsAgainstAlzheimer, nearly two million millennials are caring for a loved one with Alzheimer’s disease or related dementia and are suffering from severe emotional distress and impairment of their ability to work – 14% left the workforce entirely because of responsibility for caring for dementia . Meanwhile, 40% of employed carers in this generation say that they or someone at home have to borrow money or continue to care for a loved one. Even as our family struggled with our mother’s diagnosis, we know we were luckier than most caregivers in our situation. Our family was in a position that enabled us to take care of Lauren’s mother without having to worry about difficult financial decisions. But with nearly 80% of millennial caregivers suffering from emotional distress, we know so many need more support. We joined UsAgainstAlzheimer’s Paid Leave Alliance for Dementia Carers because we know that paid leave can be a lifeline for the care community, especially for the younger people who need to gain a foothold when they are struggling to get cared for and work at moving critical time in their life. Congress and the Biden Administration have an opportunity to reshape family welfare by making paid family and sick leave central to building a stronger and family-focused economy. We ask you:
– Include families caring for older adults, not just parents caring for children, when considering paid vacation benefits, flexible schedules, and job security for working Americans;
– Providing facilities for home carers who have been forced to leave work or take low paid jobs to care for their loved ones at home due to the closure of adult daytime programs;
– Providing incentives to households large enough and long enough for caregivers to make good decisions about how care is delivered without having to settle for poor or inadequate services;
– Establish flexible workplace guidelines so that employed caregivers can accompany their loved ones to medical visits, including visits related to clinical trials and life-saving research.
Adele, Lauren’s mother, was a teacher for 35 years. She taught her young students and children what it meant to be part of a community. She taught us how to use our voices and actions forever.
And she taught us how to take care of the people we love – and how important it is to show yourself for them.
Her children and the generations of children she taught carry these lessons with them today. It is time for elected leaders to do the same.
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