What coping strategies work best for family members after a spinal cord injury?

It varies tremendously but a lot of beliefs and myths about rehab, about doctors and all of that. And so a lot of times we’ll have individuals who think, “Oh, I can get better on my own, I don’t need this,” and that’s very, very challenging as well. But it’s very common for individuals to not want to be there, to think, “If I was just went home, if I were just back in my environment everything would be fine, and I would walk again or I’d be functioning again just as I was before, I could get back to work.” And it’s a huge, huge process to realize that’s not going to happen, or not in the same and it can happen differently, but it’s just a huge process. We know what can work and we’ve seen improvement, we know that rehab makes a tremendous benefit and ultimately our goal is to improve quality of life.

Relaxation, checking in with their anxiety, physical activity is important, getting up and moving around. Being sure to exercise, having breaks where the individual is going out and doing things on their own, having some of their own life experiences separate from the individual. I think it is also very useful if the individual uses things like meditation or prayer to help them in their journey and in managing again their own anxiety.

To the extent that you can, try to rely on what worked for you before, and it’s likely to work now. There are times when you don’t really have to actually do anything—and then honestly, denial can be very helpful. It really alleviates all of your anxiety and depression, but it’s no good if you really need to act. So then, some people are very organized—they make lists, they get input from other people. Other people like to be more meditative, some people need to exercise. So whatever worked for you before is very likely to work now. It’s really important to differentiate carefully between your own thoughts and feelings, and the thoughts and feelings of the person you’re caring for.  I actually did a lot of research on this. And so people tend to assume “well, if that was me, I’d feel that,” and so the other person might be feeling it.  And, that’s very often not true, it’s very important to ask, and to keep that communication open, and really be aware of what your feelings are and what’s that other person’s. And that will really help you to cope and take care of yourself.

You’re sitting there going “I wonder if I’ll ever see the person again? Will they ever be able to go back to work? What does that mean for the family? Are we going to be poor? Are we going to give up our life dreams?” The way to cope is to understand what did you do before, and now how does that apply here and then let’s talk about some of these skills. And one of the skills is “are you taking care of yourself?” First and foremost, you need to take care of yourself. And I’ve had discussions where, “I don’t have time to take care of myself, I need to be there.” And It’s like yeah, you’re going to be there 24/7, and sometimes they are, until you feel comfortable. So work with the team, work with the nursing staff, work with the OT’s, the PT’s, the speech—all insights and mental health—and the physicians, and talk about your readiness, your trust. How do you let go a little bit to allow us to do our job? And when you do that, you need to monitor us because that’s going help you feel safe. Part of that is Skyping now, and using the telephone and keeping in contact with us on a daily basis if that’s needed. We don’t really mind that because we’re all busy! When people say, “I’m busy,” if you’re not busy you’re not at work. So you have permission—not to bug us—but you have permission to call us because we can’t help if we don’t know.

I lots of times see family members—whether they be a parent or a spouse—decide in their own mind that the role they need to play is one of a cheerleader, and they need to be the rock for that person and they don’t need to let the person see them cry or scared. I think sometimes that drives a wedge between the person who’s doing the supporting and the person who has got the injury. I think we’re better off when we’re open and upfront about our emotions with that other person because there’s a lot of overlap. The person is scared and I think if you can acknowledge as their loved one there are moments when you’re really scared too, that that really connects with them in the journey.