Caring for the Caregiver
By Tara Ebrahimi, Director of Communications
At age 5, I became a caregiver. My brother was born with developmental disabilities and in his early 20s, his severe mental illness set in. Each year of my caregiving manifested in different ways: When my brother was 6 and I was 11, I spent hours trying to teach him to read; at 16, I drove him to appointments and tutoring sessions; at 25, I coordinated with caseworkers and psychiatrists and hospitals during emergency psych ward stays. I am almost 36, and I am exhausted.
I can’t fully put into words the complex emotions that are wrapped up in my relationship with my brother. In an attempt to explain just a few of those emotions, I am heartbroken over how his life has turned out. I can never forgive my parents for their ineptitude in trying to help him. I am angry at a broken social services system that is unresponsive, inconsistent, and ineffective. It seems that every time I think I’ve understood, processed, and accepted one of these feelings, a new one crops up. The cycle is never-ending, and I am stunned at the seemingly infinite spectrum of grief, sorrow, fury, guilt, etc. etc. etc. I carry with me.
Today, a new realization has emerged: Who is caring for the caregiver?
In the United States, approximately 43.5 million caregivers have provided unpaid care, with 39.8 million of those caregivers caring for an adult with a disability or illness (National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S., Coughlin, J. (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management).
Although it seems absurd to put a monetary value on caregiving, “At $470 billion in 2013, the value of unpaid caregiving exceeded the value of paid home care and total Medicaid spending in the same year, and nearly matched the value of the sales of the world’s largest company (AARP Public Policy Institute. (2015). Valuing the Invaluable: 2015 Update).
Like most things in our society, women bear the brunt of caregiving, with 75% of all caregivers being female (Institute on Aging. (2016). Read How IOA Views Aging in America).
And, because most caregivers are taking care of loved ones, 57% report that their lack of choice in caregiving is self-imposed; 43% feel it is their personal responsibility (AARP and United Health Hospital Fund. (2012). Home Alone: Family Caregivers Providing Complex Chronic Care).
But caregiving extends beyond just an individual providing care and support and empathy to a loved one. These past few months have seen a surge in caregiving: neighbors offering help to other neighbors during the COVID-19 pandemic; communities of color rallying around victims and families affected by police brutality; allies stepping up and out of their comfort zones to support those impacted by systemic racial inequities; teachers and frontline workers putting themselves at risk for those they serve. The list goes on and on. How often do we stop and ask these individuals how they are feeling? How their work has impacted their mental well-being? How their burden of not only physical caregiving, but emotional empathy has drained them? They are expected to go and go and go until they have nothing left to give. But the problem is this: that time rarely comes. The well of energy for caring for their loved ones knows no depths. Because it can’t.
The last few days have been extremely challenging for me. My brother’s mental illness has taken a turn for the worse (I’ll never understand how something can get “worse” than “the worst”), he has been shuffled from ER to ER waiting for a bed in a psychiatric ward, the police had to be involved, so on and so on. I spend my time on the phone with his team of social workers, doctors, insurance agents. I spend my time trying to convince my parents of the best next steps (of which I myself am not even confident). I spend my time grieving for my brother’s life. I spend no time thinking about my own pain. As a caregiver, as a woman, as a legal guardian, my pain feels secondary and selfish.
Today I will make space for these feelings. I will look back on the last 30 years and try to conjure up a memory of my mother or father asking me how I felt knowing that my brother will be tethered to me forever. Or a moment where I mourned my life--not his--that could have been, had circumstances been different. Just one instance where I came before all else.
But first, I have to call the hospital and make sure that his room is ready.
