Why is it important to talk about changes in roles and responsibilities after brain injury?
There’s a lot of ambiguity associated with role and responsibility changes after a brain injury, so people typically don’t sit down and have a conversation about how all these things have changed. It's confusing for everybody to try to figure out who’s supposed to be doing what and who’s in charge of what and where they should go when they need things.
People who handle the shifts well that are going to inevitably occur after brain injury are people who are clear as much as possible about the changes that are happening. So an example might be a mom who has a brain injury; if she was the person who helped the kids with homework or helped the kids with their daily chores, she might not have the organizational skills or the cognitive capacities to take on that job any more. But if Dad just steps in and does it sometimes, then Mom is going to be confused about her responsibility. Sometimes she might try to step in, sometimes kids are going to look to Dad, sometimes to Mom. Everybody’s going to be uncertain that things won’t go very smoothly.
So the people who do it well are people who sit down and have a conversation and say, “Mom used to be the person you went to for help with your homework, but right now she’s working on getting well and so, for the time being, Dad’s going to be the person who’s going to help you with your homework.” People who have those conversations and who address those openly and communicate their feelings around those changes are going to be the ones do best, even if it’s not possible to talk about every role or responsibility change.
This is important because survivors are often very distraught about the idea of giving up the things that they were good at. People in relationships usually choose roles and responsibilities because it is the area that they succeed in or because they do a good job. And so when someone’s asked to step aside, not by choice, from something that they enjoyed or did well, that can be very painful.
At the same time, the caregiver too is overwhelmed by the burden of taking on something that they didn’t want to do to begin with, so when couples sit down and talk about how that feels to make those changes and share the experience of loss with one another, they’re often able to move through that process a little more seamlessly.
Of course, it is hard to have the conversation about the changes in roles and responsibilities. There are so many things going on. The survivor is now having to go to multiple doctor’s appointments, having to relearn many, many skills, learning how to figure out who they are now and how to be this new person. The caregiver is just trying to kind of hold down the fort a lot of times. And so to fit in conversations around feelings or daily tasks sometimes feels like a burden, but it can make a big difference.