Dan’s story: Supporting family members

3 December 2019

Back Up doesn’t just support people with a spinal cord injury. We also provide vital services for family members. These services are only made possible by the tireless dedication of our family volunteers, who give up their time to help people like them.

Dan is one of our family volunteers. He has a lot of experience with spinal cord injury – both through his job as an occupational therapist and from having a loved one with a spinal cord injury.

“My wife Beth sustained a C5/6 level spinal cord injury in a car crash when she was younger – before I met her. We first met at the start of university, over eight years ago, and we just got married this year.

“I heard of Back Up when Beth told me about the ski karting course she went on. My first encounter with the charity was at the Back Up Ball. We dressed up as Robin Hood and Maid Marian – it was really fun!”

Dan says in the early days of their relationship, there needed to be a lot of communication and compromise. They had to be able to talk openly about issues surrounding spinal cord injury like bladder and bowel care. Dan also had to adapt to Beth having a live-in personal assistant (PA) due to her high level spinal cord injury.

“You can get used to your partner having a PA quite quickly if you keep an open mind. It’s important to remember that they support your loved one to get out and live their life.

“Beth’s PA would go with her to wheelchair rugby matches and wheelchair races. It’s good to do things separately sometimes, and a PA allows us to do that.”

Beth was key in getting Dan involved as a family volunteer. She is one of our mentors, and she suggested that Dan try volunteering himself. He soon trained as a family mentor. Dan helps family members of people with a spinal cord injury achieve their goals, providing them with a listening ear.

“I have an initial phone chat with the people I support to figure out how I can help them. We then work together to come up with strategies they can use to overcome the issues they face.”

One of the most common things Dan notices with the people he supports is that they often put themselves on the back burner. He finds family members sometimes hide their feelings with the justification that things are “worse” for their loved ones. Through mentoring, he gives family members a safe space where they can work through their feelings.

“It’s easy to think that your life hasn’t been affected in comparison to your loved one, but it has. Spinal cord injury impacts the lives of everyone around the injured person.

“I want family members to know it’s ok to show their emotions.”

More recently, Dan has started supporting family members during our spinal centre relative’s days. This is an opportunity for family members of injured patients to meet Back Up volunteers and hear their personal stories. Dan is often surprised by how little relatives often know about spinal cord injury, so he uses these days to share vital information. He covers topics such as skin care, bladder and bowel management, and breathing with a higher level injury.

“We have group chats where family members can ask us questions. Hearing our answers and stories helps, because it normalises the new life they’re going into.”

One of Dan’s top tips for volunteering as a family member is to remember that your own experiences are unique – and very valuable to share.

“What worked for you may not work for everyone – but it’s still important to share what you’ve been through. They can help others with their situation and help them realise they’re not alone.”

Volunteers like Dan who give up their time to support people affected by spinal cord injury are the heart of Back Up. If you’re a family member and want to support people in similar situations, get in touch.