If your family member has experienced a spinal cord injury, you may be confused and a little scared. In a blink, life has changed. There are many emotions — concern for your loved one, decision stress, grief, and feeling overwhelmed.
The good news is that there’s a community ready to share what they’ve learned: spouses, mothers, fathers, and friends that will readily give advice. We’ve assembled suggestions from a few caregivers’ experiences. Following is what they learned and some resources they used during the first few months after a spinal cord injury.
1. Advocate for your person.
Rebecca MacTaggart was on a beach vacation when her son Jackson was injured in the ocean. She began to advocate for him as soon as emergency personnel started making decisions. “Jackson was stable, so I asked that someone get off the Life Flight so I could get on,” she says. “They let me go, which was nice.”
In the hospital, a doctor callously told her son upsetting news. “He was in the ICU and 15 at the time. The doctor told him he wouldn’t walk again — without me in the room. He had nobody there. The doctor wasn’t allowed to go near my son again,” she says.
Rebecca recommends that you stay with your person, if possible. “I feel like the support system should be around and available if possible.”
2. Educate yourself
There’s a head-spinning amount of information about spinal cord injury available online, from insurance benefits and grants for needs to choosing a rehabilitation hospital.
While Jackson was recovering from surgery, Rebecca learned about the SCI Model system sponsored by the National Institute on Disability, Independent Living and Rehabilitation Research in her search for the next steps for his recovery. NIDILRR is a federal agency that awards grants to rehabilitation hospitals that demonstrate excellence, and the chosen places are typically the gold standard in care after a spinal cord injury.
Since Rebecca’s husband went back home to work and care for their daughter while she looked after Jackson’s needs in the hospital, the couple had access to several locations. She visited the rehab facilities near Jackson’s hospital, and her husband toured the ones closest to where they lived. Ultimately, the extra information they gleaned informed the family’s decision to send him to a hospital near his home.
3. Do what’s right for your situation.
When Andy Reese broke his neck at C3-4, the doctors told his wife, Courtney, that he’d be a quadriplegic. Even though family and friends cautioned her to make major decisions slowly, she knew the best step was to sell their home immediately. “Everyone kept saying to just live in the house for a while and see how it works. I kept thinking it would kill him to see other people working at his house when he couldn’t do it,” she says. “He’s a doer, a fixer.”
Courtney told her husband she wanted to sell. He was also reluctant but understood why it was necessary as their multi-level house had too many accessibility challenges. Courtney moved her children and their belongings while Andy was still in the hospital and made the new place wheelchair-friendly with help from neighbors and friends. “It was hugely beneficial. We could start living our life,” she says.
Andy is an integral part of that life, even though his mobility has changed. “We’ve got kids doing football. We’ve got Girl Scouts. He can’t just stay at home,” she says. “He’s part of our family and we go everywhere together. I had an accessible van from day one, and we just kept living our lives.”
While Courtney was able to find one in time for Andy to come home, accessible vans are often hard to procure. United Spinal membership magazine New Mobility’s article, “Rocking My Accessible Mini-Van,” may help you assess what is possible for your family. “Tips for Buying a Used Wheelchair Van” is also a good resource.
4. Involve your loved one in decisions
Rebecca asked Jackson’s opinion when it was time to pick which rehab he would transfer to. The choice was between a respected children’s hospital or an adult rehab near his home.
As a teen, Jackson had tons of empathy for the children in the hospital, but he thought he might focus better in an adult environment. They could get a newly renovated room that had just become available.
The adult rehab was an excellent choice for Jackson. United Spinal had a presence there, sending in peer supporters to help him adjust. “Some advocates from United Spinal came in and talked about adapted sports. Jackson was a cross-country runner. It gave him some comfort that he wouldn’t just be sitting at home for the rest of his life,” says Rebecca. Today, she is the Government Relations Coordinator for United Spinal.
5. Don’t be afraid to use your resources.
After Andy returned home, Courtney turned her house into a well-oiled machine, “I’ve got a schedule. I have helpers. The caregivers are part of our family,” she says.
Courtney consulted an elder law attorney to mitigate the financial burden of hospital bills and ongoing care. She researched grants to cover construction costs and waivers for medical supplies. A friend with a disability suggested she apply for Medicaid, and she did, expanding Andy’s coverage for his needs.
She also didn’t accept the limits of their family insurance when it came time to go to rehab, “My insurance company wouldn’t cover the great rehabilitation hospital we had in Pittsburgh. I made calls and asked other people to make calls, and the insurance company worked it out. My advice is that you should just keep fighting.”
The MacTaggarts focused on making full use of the time in the rehabilitation hospital to help Jackson be as independent as possible, “We were willing to be involved, of course, but not to helicopter,” Rebecca says.
The rehab staff had them take measurements of their bathroom at home and recreated that physical space so he could learn transfers and become as independent as possible. After seeing therapists use valuable time stretching Jackson to prepare him for a session, Rebecca asked if she could learn to do the limbering exercises so they could have more productive sessions. That time was vital for Jackson to develop a sense of control over his life.
6. A new normal is still normal
Courtney found that people feel sad for their situation, but she doesn’t see her life that way. “People feel so bad and think our life is ruined. Andy is still the same person. He’s still here with us, and I don’t understand why people think our life is terrible. We were given the gift of time,” she says.
Before, Courtney’s life with her busy family was like a hamster wheel, always in motion. Because of the structure of caring for Andy, they are both home for the kids and enjoy a slower schedule. She has the energy to help them with homework and not be exhausted from work outside the home. With an accessible van, Andy joins them for the kids’ sports and events and their family is thriving. “It’s just a different lifestyle,” she says.
Support groups can help people visualize a full life after a spinal cord injury. These groups regularly provide a social network to get advice and help with any issues. United Spinal’s website has an easy-to-use search function for groups in your area.
7. Take care of you
There is an amazing amount of resources on the United Spinal website that tackle issues like maintaining your health, hiring a caregiver and managing stress. It’s important to arrange breaks, get plenty of rest and exercise and be alert to changes in your emotions that might need addressing. Caregiving is hard work, which makes choosing how to use your inner resources incredibly important.
While Jackson was in rehab, Rebecca would have coffee at the cafe or walk by the river. “I made time to do that for myself,” she says. “You know, maybe you don’t need to be there with the camera videotaping every session. You won’t be a good caregiver if you aren’t doing good for yourself.”
Even so, Rebecca felt that everything had to be exactly right for Jackson and ran into some stress when the bathroom wasn’t refitted as she wanted. She offers valuable advice: “It doesn’t need to be perfect, and it was better that it was not. Jackson got stronger, and because things weren’t perfect, he’s able to navigate the world because things aren’t perfect there either.”
Courtney’s family experienced tons of changes but persevered. “A lot of people told me I’m so strong and asked how I was able to do this,” she says. “I really wasn’t given a choice. This is not something I wanted. But when you’re given something like this, you have to keep going every day. My biggest advice for someone going through this is that life is not over.”
— Jessica Farthing
Please contact United Spinal Association’s Community Supports team for more information or assistance. Join our community by signing up for a free membership. To support our mission, donate here.