Imagine being so consumed with the work of caregiving that an eviction notice doesn’t scare you. This true story reminds us of how dangerous it is for caregivers to feel disempowered and how powerful storytelling can change the lives of caregivers in crisis.
Janice was diagnosed with neck cancer when she was only in her forties and raising two children with her husband. While the cancer went into remission, she developed additional medical problems and ultimately needed a feeding tube.
Her husband, Bob, worked full-time as a salesman, and his job had provided the family’s health insurance. However, there were considerable out-of-pocket medical expenses which totaled over $200,000. Afraid to jeopardize Janice’s health care, the couple tried to keep up with the bills. Ultimately, they sold their home and moved into a mobile home park, but this was not sufficient to keep them afloat.
By the time Bob called Jewish Family Service, he was facing a pending eviction notice. Returning home from work one day, he had found Janice lying on the floor, where she had been for hours, unable to get up by herself. He became increasingly afraid of leaving her alone but could not afford home care, so he gradually reduced his work hours until he was no longer earning any money. Soon the couple fell behind in their lot rent and began receiving shut-off notices from the electric company.
Sadly, their financial situation was not unique, nor was the calm attitude with which Bob seemed to approach looming homelessness. Like many caregivers feeling overtaken by life’s increasing challenges, he had become numb to crisis almost to the point of inertia.
Seligman and Maier (Failure to escape traumatic shock. Journal of Experimental Psychology, 74, 1-9. 1967) observed the phenomenon of learned helplessness among dogs who “learn” not to try escaping electric shock when earlier attempts to escape fail. Seligman subsequently theorized that people are similarly prone to passivity and depression when their actions to better themselves seem repeatedly ineffective. It’s easy to imagine how confronting a debilitating illness of a loved one and rising health care costs that reach beyond a family’s means can leave a caregiver feeling alone, disempowered, and without a voice.
Bob needed to experience success in working with hospitals, utility companies and other systems. His story had to be told – and to be told to the right people in a way that they could hear it.
JFS care manager Stacy Ocko-Lulkin likes to “present the person” by giving her own impressions of the person in need. Whenever possible, she makes her advocacy phone calls while the individual is sitting by her side and she invites them to join the conversation once a warm tone has been established.
“I’m calling you, with Bob sitting right here beside me” she told one hospital administrator, “He has been working so hard to care for his wife who has cancer, is eating through a feeding tube, and homebound. He’s come to us for help so that he can pay his bills.”
The word “us” is very helpful in such calls. It suggests that the care manager and the administrator are on the same team. In addition, Stacy quickly addressed the financial issue, suggesting that Jewish Family Service will help Bob handle his accumulated debt. Stacy’s tone of voice was warm and professional, and she had the credibility of the agency behind her. For all these reasons, she became a person the hospital administrator wanted to talk with.
Having engaged the administrator, she could begin telling Bob’s story – and then involve Bob in the discussion. First she explained that Bob had become overwhelmed with the daily responsibilities of feeding, bathing, and keeping company with a loved one, who had become more and more ill over the years. “He was a hard worker who had always paid his bills in the past,” she said (helping the administrator to identify with him) “and very much wanted to fulfill his obligations now.” Bob strongly reiterated these points.
A critical ingredient in any advocacy call is a vivid description of efforts that the client is making to solve their own problem. Requests for local financial assistance and attempts at saving money should be discussed. In this case, Stacy explained that Bob very much wanted to return to work, a plan that was feasible since Jewish Family Service intended to help him secure daytime homecare.
She subsequently helped him apply for Medicaid and connected him to the Office for the Aging, the Department of Social Services, and a managed care provider that offered a home health aide. Just as importantly, however, she coached Bob on advocating for himself and ultimately helped him find his own voice. As they found more assistance, Bob began to feel that he could help shape his family’s future even in the midst of serious medical challenges. This confidence was lifesaving as he ultimately needed to “make a case” to Janice to seek essential medical attention.
Exhausted from dehydration and malnutrition, she was unable to consider her treatment options and was consequently declining all assistance without discussion. With the care manager’s support, Bob was able to step into his role as health care proxy and secure necessary treatment for her.
Like so many caregivers, Bob had come to feel powerless. Helping him tell his story, engender the compassion of strangers, and speak up for his family was a priceless gift that continues to touch his life today.
Jewish Family Service of Orange County, New York is a nonprofit social service agency that strengthens families through care management, emergency financial assistance, and supportive counseling. Services are open to the entire community.