Caring for a Family Member Living with Paralysis Support Groups

Posted by Reeve Staff in Life After Paralysis on June 21, 2021 # Virtual Support Groups

The first meeting of the Christopher & Dana Reeve Foundation’s virtual support group for caregivers was about to begin and Sarah needed a quiet space for the call. Without a second thought, she hustled into the bathroom in the hospital room where her husband was recovering from surgery for a bout of kidney stones.

“I closed the door and told him to yell if he needed me,” she says. “I just didn’t want to miss this opportunity.”

virtual meeting on a laptop next to a blue coffee mugSince the group launched in April, its free, bi-weekly meetings hosted on the Hey Peers platform have provided the support that Sarah —who asked to be identified only by her first name–has sought since her husband sustained a complete spinal cord injury (C3 break and C4 to C6 fracture) in 2017.

“I have been searching for four years for a group like this and they just aren't out there,” she says. “You can find cancer support groups. You can find ALS support groups. But just try to find a spinal cord injury caregiver support group that is moderated by a licensed social worker.”

The physical impact of a spinal cord injury is a central focus of rehabilitative efforts — essential aspects of life, from bathing and going to the bathroom to learning how to navigate public and private spaces using a wheelchair, require urgent adaptation. But the emotional challenges of living with paralysis should not be neglected; the Reeve Foundation’s ongoing virtual support groups offer individuals living with paraplegia, quadriplegia and their caregivers a space to connect and discuss their experiences.

When she became her husband’s caregiver after he returned home from rehab, Sarah was terrified.

“It was constant worry, 24/7, for the first two years. I kept thinking: Am I going to insert the suprapubic tube wrong? Am I going to pierce the bladder when I change it? Is he going to die in his sleep?” she says.

Unable to find a support group—when one local nonprofit advertised a meeting for spinal cord injury caregivers before the COVID-19 pandemic, she was the only person to show up –Sarah struggled with a profound sense of isolation.

“I wanted, and needed, to find people who are in the trenches, who are doing the daily caregiving, who I could talk to about medical supplies— about everything spinal cord injury related,” she says. “I was looking for an outlet because I’m on an island.”

After her first session with Reeve’s virtual support group, Sarah emerged from the hospital bathroom overwhelmed with two emotions: “Relief and validation for what I handle on a daily basis as a caregiver. I’m not alone.” she says.

Unlike Sarah, Karen Washington has been lucky enough to meet regularly with fellow caregivers at the hospital near her Maryland home since her son sustained a C6-C7 injury in a car accident a few years ago. But that group only meets monthly and isn’t specific to spinal cord injury; Reeve’s virtual meetings have given Washington the chance to connect with other caregivers who are more familiar with her specific experiences.

“Even friends don’t understand what you go through,” she says. “But in this group, people say things and I know exactly what they mean. It has definitely helped me to be around people in the same situation.”

Washington appreciates the camaraderie, and the practical advice she gains from each meeting’s structured topics and discussions, from travel tips to bowel and bladder management advice. The meetings, which host up to 15 people, have been so helpful that sometimes she hesitates to sign up until the last minute.

“I don’t want to hog the space,” she says. “I want to make sure other people get the chance to do this. You can share as much as you want or as little as you want. Sometimes just listening helps.”

Sarah agrees; a community of peers makes a difference.

“You can feel the solidarity,” she says. “We're in this together.”

To register for upcoming meetings of either the caregivers, paraplegia or quadriplegia support groups, please visit Hey Peers.

This project was supported, in part, by grant number 90PRRC0002, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.