Photo illustration of caregiving. From sabinevanerp (pixabay.com).
I say goodbye to a different part of my mother every day.
Since the COVID-19 outbreak, my mother’s Alzheimer’s disease has gotten worse — faster — than in the 13 years since she was diagnosed.
First, she stopped recognizing me, the eldest of her five children, even though we live together. Today, at 83, my mom needs help for basic tasks, from eating to bathing.
I am my mother’s primary caregiver and our full-time breadwinner. I am also a black woman in a key electoral state who plans to vote. This year, as I struggle to care for my mother and give my job my full attention, I know I have a responsibility to cast my vote for candidates who support family caregivers like me.
From protecting the Affordable Care Act to establishing paid family leave policies at the state and national level, there are too many vital issues that affect family caregivers to sit out this election.
Under COVID-19, my two full-time jobs have collided as the additional help I’ve relied on for my mother, such as an adult day program that kept her mind engaged, shut down.
For me and millions of caregivers nationwide, the pandemic accentuated the juggling act we perform everyday to balance the needs of those we love with full-time jobs.
It is clear we need more than the temporary relief we’ve received from Congress in recent stimulus bills. The pandemic has laid bare why we need comprehensive paid family leave that supports families like mine.
Since the pandemic, I’ve been using vacation time, sick days, personal days and comp time and flexible schedules to meet my mother’s needs. That’s not unusual. It’s what I’ve done for years in order to take care of the women I love.
Almost all the women in my family have been diagnosed with Alzheimer’s. First, my grandmother, then my mother and three of her four sisters. In addition to my mother, I cared for one of her sisters before she passed away from Alzheimer’s in 2015.
During that time, I scheduled our doctor visits simultaneously to avoid taking off multiple times for each of us. I regularly used all of my sick time for them. If I got sick, I had to rely on co-workers to donate paid sick time, so I could take care of myself.
I often woke up at 4:30 am to bathe and feed them before work. I’ve had one real vacation in 15 years.
A state and federal comprehensive paid family leave policy would help me when I have to be in two places at once. It would allow me to be more focused and productive at work and provide better care for my mom without the constant fear of added financial strain.
About 16 million people provide care for six million Americans living with Alzheimer’s or a related dementia, providing 18 billion hours of unpaid care. A study by UsAgainstAlzheimer’s Center for Brain Health Equity shows 49% of employed dementia caregivers have access to paid leave. For Latino and Black families, one in four caregivers report not having time-off benefits to care for loved ones.
As employers bring people back to work, I worry about my mother when I have to physically return to an office. Paid family leave would ease that pressure and give me peace of mind to care for the woman who would have done anything for her children. That’s why I’m making a plan to vote in November. There’s too much on the line for caregivers like me not to.
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