How are family relationships affected by a spinal cord injury?

A spinal cord injury causes pressure on a system. Sometimes that system is working well, and it can take it, and responds wonderfully. It provides one another with support, and more connection and focus that can bring a family together. In other ways though, when the relationships were built on a single factor—something like, “Oh but, we always went skiing together,” or “We had this in common.” That the stress of a spinal cord injury causes more problems and fractures. In some ways, it’s because there are different roles now because the individual with the injury has to deal with it, they can’t run away; other individuals though, can. And so it really depends on what was there before. Hopefully it is an opportunity to bring people together and to enrich relationships, but not always.

Family members are very impacted by spinal cord injury. It's such a grieving process for everyone; it impacts the entire family-siblings, parents, spouses, caregivers and everyone deals with it differently. It really requires a lot of understanding and tremendous support.

Often times the family is the primary caregiver for that individual, so not only are they learning a new set of skills, but they’re having to redefine their relationship. And often times, depending on what phase of life they’re in, that can be a challenge in reestablishing what those roles are. They’re also providing support for the individual as well, so it’s essential that we include family members in the acute care and long-term care process.

Family, significant others, partners—they get pulled into what’s called an “emergency crisis.” And at that point, they become part of the team and they have to learn to be a part of that team. That means being active, proactive and also to learn—they become a student, and they become a teacher and they become a team member. At that point, not only are they a part of the team, but they need to do their homework, they need to take care of themselves. In therapy so many times people say, “I don’t have time,” and there are times when you don’t have time. But if you burn yourself out, you’re going to find that you won’t really have the time to do what you need to do. When I share that with them they say, “I get that.” So we talk about taking a little bit of time each week, or a little bit of time in that day to just take care of themselves—whether it’s listen to music, whether it’s calling a friend.

Everybody who loves the person who is injured in their own unique way. Just think about a family and the various roles that people play to create a familial unit, and once someone is injured, the whole dynamics of that family is disrupted. And so roles change, responsibilities change and the questions is, how does the family reconstitute itself post-injury?

I think one of the biggest things with families is you end up with a lot of role changes. People have worked out certain roles within their families and something as dramatic as spinal cord injury throws those roles into disarray. Especially if you’re thinking about a couple or a family, lots of times people have worked out what’s on my list, what’s on your list—kind of an unspoken rule in terms of roles within a family. Spinal cord injury often times moves things from one person’s to-do list to the other person’s list. And people can feel overwhelmed with trying to go through their own grief and sadness, but also all of the other things that they used to count on someone else to do are now on their list.

It’s important to appreciate that the family has gone through significant changes while their loved one has had their experience, but the families are finding themselves in new roles and new responsibilities, possibly parenting differently than they did before. The couple’s relationship can be remarkably different than it was before. How children interact with their parents, a parent who’s had a spinal cord injury, or the child who them-self has had the spinal cord injury, and how they play. So it can really affect almost every aspect of that family life.