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What can families do to help patients cope with a spinal cord injury?
One thing they can do is at least let them know that they will always be there for them and be as supportive as they can be. That indeed they will make whatever adjustments in their lives to make sure that after they leave the hospital in particular, that those individuals will still be there to do with them all the things they could do to enjoy life.
Family members are huge; they really are the key to helping individuals cope with spinal cord injury. Everything about their support is so, so necessary. For loved ones to help them in so many ways, one is just being there to listen, no judgments, just being a sounding board, being a support, helping advocate with them with their physicians. Being that other ear who can hear what is being said-a lot of times it's very difficult to listen to the medical community and really absorb what's being said. So being that support system that's there for them. There are so many steps along the way that make it important to have a support system with you.
I think patience and tolerance are very important; respecting also the person’s privacy. When people need a break from family and need to self-reflect, I think that’s important. I think rehabilitation can be very intense and very time consuming, especially when compressed hospital stays are certainly here. So the idea of not keeping people busy all the time, and allowing people to understand the connotative meaning of the injury to them, is very important.
Look for ways to treat them as the person they were before the injury and as the person they still are. Sometimes I think parents in particular can decide that what they need to do with kids who are newly injured or a teenager who still is their child, that they give them more leeway, they don’t hold them accountable, they baby them in a way that they wouldn’t have done before, and I think that makes for a more complicated picture. I think lots of times I encourage family members to treat the person in the way they would’ve treated them before. In a loving way but not giving them latitude in places they wouldn’t have before, and not being harsher than they would’ve been before. It’s hard to do sometimes but it’s trying to look for the familiar and engage at that level.
First of all, how is the family member coping? Because the person who loves them is looking at them as well, to interpret this experience. So I would encourage them to be in touch with their own anxiety, their own tension and work on that; that’s the first place to start. While it is important to be encouraging of the individual, it is also important to not be the kind of person who says something that isn’t going to come across as genuine. An individual is very sensitive to that, we’re all sensitive to that—telling me that everything is going to be okay, that I can do this. And that may be the truth, but I certainly don’t feel it at the time.
Families can do a lot and sometimes just being there—sometimes a person is intubated so they’re not being able to communicate, or their level of alertness is low—but being there, what’s called “touch”, just holding a person’s hand, joining with the person in whatever way they’re used to doing that. Putting things around in the room, and I see it all the time; it becomes your room, your space. Own that because that’s a space where you heal, that’s a space where you come out of the emergency to the reality of where you are, to looking that you can establish and live, to now looking at where you can go. And that’s getting back on track.
When you talk about coping, one of the most important pieces is attitude. And that includes both their own attitude and encouraging an attitude of the individual with their family member, their loved one. So for families, thinking this isn’t the end of the world, that the person isn’t bound to a bed or in a room—their life isn’t over. Knowing yes, it’s going to be tough but there things you do to problem solve and move forward. And, continuing to expect the individual to move on with their life, and to have a purpose, and to be involved and to connect.
There’s a lot of silence in families where the family member is worried about the disabled person and the disabled person is worried about their family, and everyone just kind of dances around it. Be honest, communicate, work on your problems together as a team. And that really re-establishes the person’s faith that they have something to contribute to the relationship.