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Combating Caregiver Isolation: Respect, Recognition and Reciprocity

May 29, 2015

I imagine most people who have battled cancer or helped a family member do so found a moving familiarity in Tom Brokaw’s Dateline NBC episode about his fight against cancer. I certainly did. I especially related to how being thrust into the role of caregivers had affected Brokaw’s wife and three daughters. As Brokaw’s oldest daughter Jennifer, a physician, noted — tears welling in her eyes — it was a job that she was honored to embrace, but one that took a lot out of her, too.

Sometimes, the responsibilities of caring for an aging parent or spouse, a disabled child, or a cherished relative with a long-term illness build up slowly. Other times, they crash down from the blue, as my family experienced when my father suffered a freak brain injury at age 65. I will never forget the anguish I felt as he lay in a three-month coma; the pain of not knowing what the next day would bring, or when or how the crisis would end.

Yet, equally searing was seeing how the experience affected my mother, as she — my father’s wife, best friend and life partner — stepped into the primary caregiver role. I learned that, paradoxically, caring for someone you love can be an intensely lonely road; simultaneously a time of near constant togetherness and a time of profound isolation. And I believe this isolation can be as devastating to the caregiver as any affliction is to the person being cared for. In some respects, a family caregiver will never be closer to a loved one.

Just ask the adult daughter washing her disabled mother’s hair, or the husband tenderly holding a cup of water to his ailing wife’s lips. And yet, at the same time, family caregivers may feel distanced from the world–deprived of the relationship they used to share with their loved one, especially in cases where that person’s capacity has been diminished; alienated from their community, because caregiving can be all-consuming, and even friends may not know how to be supportive; and disconnected from the life they used to know and the person they used to be, as they struggle to process complex emotions, including heartbreak, anxiety, anger, loss, fear, guilt, despair, and shame.

There is no simple policy prescription to combat such isolation — though, in some small way, just knowing the experience is shared may diminish the sense of separation. And it is shared. In my home country of Canada, more than 8 million unsung heroes are providing unpaid care to someone else. In the United States, according to the National Alliance for Caregiving, there are 66 million family caregivers — roughly 4 in 10 U.S. adults. But I believe that truly compassionate communities must move beyond awareness and embrace our responsibility not only to care for the ill, but to care for the caregivers as well. Family caregivers in particular need access to structures and systems that can re-weave them into the social fabric, and help them feel supported at a time when it can feel as if their world is falling apart. I see three crucial pathways for support: respect, recognition, and reciprocity. Respect can be as simple as medical professionals including family caregivers in conversations about treatment and plans.

When my father was at the Rehabilitation Institute of Chicago, one of the world’s premier health care facilities, my siblings and I were stunned to discover that patients and family caregivers were not invited to the weekly medical team meetings doctors held regarding patient care. We urged the head of the hospital to change that policy–and to his credit, he did. The simple act of including patients and family caregivers in such discussions validates their humanity and worth, reminding everyone that they are people–not “cases”–and that their voices deserve to be heard.

Recognition means all of us taking it upon ourselves to truly see what family caregivers are going through, and to offer assistance, respite, and support, without waiting to be asked. Take them out for a meal or movie, or offer to stay with the patient so they can go out on their own. Pitch in with errands, for the patient, caregiver, or both. Even small gestures can make a big difference.

Former U.S. First Lady Rosalynn Carter often shares an observation she once heard: “There are only four kinds of people in the world. Those who have been caregivers, those who currently are caregivers, those who will be caregivers and those who will need caregivers.”

There is truth in that. We must be there for one another, just as we hope others will be there for us. Finally, reciprocity. Family caregivers are in reciprocal relationships with their loved ones, as husbands and wives, parents and children, brothers and sisters. Even when the relationship has been thrown out of balance, because of illness, disability, or some other limitation, recipients of care still have valuable ways to give, and to care for those caring for them. When my father passed away, 15 years ago this spring, one of the last things he said to us, his family, was, “Don’t suffer with me. I’m an incredibly lucky guy. I’ve done everything I ever wanted to do. I’ve had a wonderful life.”

That was him. That was his treasure, knowing those things. And him telling us so was his gift.

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