Taking Care of the Caregivers:
By: Black Intellect
Tags: Caregiving, Healthcare, Family, Policy, Medical

Organizing Better Support for Family Caregivers

I never chose my first job, it chose me. My older sister and I became caregivers at eleven and fourteen years old after our mother was suddenly stricken with Multiple Sclerosis. We instantly became what is now referred to as Personal Care Attendants (PCAs), but what we simply thought of as loving children. Our daily roles and responsibilities expanded, without any training and with very little help, as my mother’s health deteriorated from losing her sight to rendering her wheelchair-bound. Three decades later, I was again conscripted by love to become a caregiver when my late wife was diagnosed with Stage 3 breast cancer. My role, from the practical things like picking up medication to listening and encouraging her, expanded as she fought for her life. Through surgeries, chemotherapy, and eventually hospice, I gave everything I had while caring for her until the night my caregiver’s job came to an end.

Caregiving By the Numbers

43.5 mil. (18.3%) of US adults have provided unpaid care to an adult or a child in the last year.

60% are female

18% take care of more than 1 person

49 years old is average caregiver age

15% provide care for a friend or neighbor

49% caring for a parent and/or parent-in-law

10% provides care for a spouse or significant other

(15%)6.5 million care for both an adult & child

10% are 75 years old or older

23% provide 40 hours of care or more a week

Caregiving in the United States, National Alliance for Caregiving in collaboration with AARP 2015

Millions of Americans like me, at some time in their lives, do the hard, yet necessary work of personal and medical care for the disabled and elderly. But unlike the workforce of professional PCAs or ‘home health aids’, family caregiver’s patients are cherished loved ones: their mothers, fathers, children, spouses, extended families, and even friends.

They may be a caregiver for a physically or developmentally disabled child, a spouse who requires temporary or long-term care, or an aging parent or extended family member. These people, whether because of economic necessity, cultural stigma, or simply love, selflessly combine the daily ‘nuts and bolts’ logistical work — meals, meds, and appointments — with the crucial emotional support and encouragement on which their disabled and elderly loved ones depend.

An aging ‘Baby Boomer’ population, longer lifespans, earlier diagnosis of conditions, and medical advancements in treatments all mean greater numbers of people are requiring caregiving in later years. Add to this the skyrocketing cost of geriatric care, medications, and healthcare in general and the result is more families choosing to care for family members themselves. Sometimes caregivers are even ‘sandwiched’ between generations, feeling torn between obligations to an elderly parent and a disabled spouse or child. For families of color, their strong ethic of familial obligation and mistrust of medical institutions, caregiving for a loved one is less like a simple economic choice and more a moral duty. For my sister and I, the idea of placing my mother in a ‘palliative care facility’ was not only unimaginable, but it would also have been seen by our extended family as an insult tantamount to abuse.

“Being a caregiver is already a tough job, but for African American caregivers, there are a unique set of obstacles and barriers that add to the difficulty of this role.” — The Color of Care: A Beginner’s Guide for the African American Caregiver

Family caregivers, like I was, often suffer significant short and long-term financial consequences from direct healthcare costs, lost wages at their workplace, and reduced lifetime retirement security. For example, despite its potential negative effect on her long term career and income, my sister specifically picked a college closer to home and jobs not requiring travel because of her role as caregiver to our mother.

Though more than half of caregivers are employed, federal and most state’s family leave policies are unpaid, so employed caregivers, particularly low-wage workers, cannot afford to take time off for caregiving. Also, they are more likely to lack health insurance coverage due to time out of the workforce. Research has shown that caregiving increase the likelihood that they will experience poverty and/or reliance on public assistance, it also reduces the net worth of family caregivers compared to non-caregivers.

One of the most difficult aspects of caregiving, often made worse by the economic challenges, is its emotional toll. I remember the often paralyzing sense of powerlessness and frustration, and even anger as my mom’s MS and my late wife’s cancer rendered them increasingly dependent on. Financial pressures exacerbate stress, anxiety, depression and other mental health effects are common among family members who care for relatives or friends. Recent estimates are that between 40 to 70% of caregivers have clinically significant symptoms of depression.

Fortunately, since 2015 all fifty states have operated some form of ‘Cash and Counseling model’ program. They pay family caregivers, from each state’s Medicaid funds, for their time helping offset some of their financial challenges. These perennially underfunded programs have been found to not only reduce the financial stress of the caregiver and patient but also improve their relationship with their loved one and the quality of care they give.

Recently, in Washington and Illinois, and Minnesota the Service Employees International Union (SEIU) has successfully combined the bargaining power of other healthcare providers, such as home health aides and nurses, with family caregivers in order to better address these financial and emotional challenges. Union locals have negotiated raises to the minimum wage state-administered Medicaid programs pay family members, provided funding for caregiver training, counseling, and paid time off, as well as long-term care costs.

As a nation, we must better support family caregivers, who play such a vital role, by reducing the financial and emotional burdens of caregiving. We need a federal paid medical leave policy that allows individuals to care for their loved ones when a medical crisis strikes. There must be supportive healthcare policies which don’t demand sacrifices in a caregiver’s education, career, or marriage, in service to the sacred duty of caring for a loved one. American families should never be thrust into abject poverty simply for caring for a sick, disabled, or elderly loved ones. It’s time we, as a nation, cared for family caregivers.

About the Author:

Michael Jackson is a Housing Policy Fellow & Communications Fellow at Community Change as well as a freelance public policy/political writer & editor living in New York City. He holds a B.A. in political science with a concentration in American Politics & Urban Studies from California State University, East Bay & was formerly a graduate fellow at the Columbia University Graduate School of Arts & Sciences’ Ph.D. program. You read his work on ChangeWire.com or can follow him on Twitter at @blk_Intellect