The excerpt below is from our livestream “Supporting the Duchenne Family” with guest Dr. Molly Colvin. Dr. Colvin is Director of Massachusetts General Hospital’s Learning and Emotional Assessment Program (LEAP) and Assistant Professor of Psychology at Harvard Medical School. Click here to listen to the full episode.
Family Function and Duchenne
Dr. Colvin: You know, I think every family has a stress bucket. You can pour stress into it up until a point, and then it starts spilling all over the floor. So, when you’re operating kind of close to the top of the stress bucket, that affects the whole family composition. That’s a place where everybody will start to “spill over.”
Each of us is different in terms of how we process stress and cope with stress. The stressors can be any number of things and they can even be things intrinsic to the individual, too.
Our thresholds for when we have had enough – and what that looks like – will understandably vary from person to person. For your children with Duchenne, it will look like Duchenne meltdowns and difficulty coping. And those Duchenne meltdowns make it even harder for parents to cope when they just don’t have enough left in the tank to begin with.
Moms
Across cultures, I think there is definitely an expectation that mothers are primarily responsible for their child who has an illness. It’s the mothers who are expected to be the person who takes care of the child, keeps track of the appointments and medications, calls the insurance company and all of those kinds of things.
Given the way that Duchenne is transmitted genetically – I think it’s especially likely that it’s mom who assumes the responsibility around the care. I think many mothers carry a certain guilt around that, whether they’re a carrier or not. That guilt then propels them to overdo it sometimes and possibly not get any rest.
The isolation around caregiving can really increase the risk of anxiety and depression. I think it’s important that we talk about that risk factor and also talk about what anxiety and depression are like for women.
Lindy: To add even another layer to this situation, it’s important to note that carrier moms’ physiological state can very much mimic and instigate their child with Duchenne.
So, if it’s bedtime and mom is agitated, the kiddo can feed off of that stress, and then mom feeds off the child’s increased agitation and then there’s this tendency for all this to culminate in an explosion or a meltdown. Of course, all that conflict affects the marriage as well.
It’s hard in all of the Duchenne families, and there’s that extra layer of similar physiologies that families without carriers may not experience.
Dads
Dr. Colvin: I think also, for men, there’s a different sort of experience. You talked about the grief around this – about the loss of their son and what that feels like for them, too. So I think it’s important to recognize both perspectives about grief. There may be a difference between grieving styles and that will tieback to what we were talking about with the partnership before, too.
Lindy: I have heard in our community that the dads – if they are the breadwinner – they can feel this incredible pressure about job security because they feel like, “If I don’t perform well, then I’m not going to make the money we might need, or we might lose our health insurance.” So, sometimes I imagine that by prioritizing their job above all else, they’re really prioritizing their family, even if they actually see their family less often.
Dr. Colvin: I think that’s an excellent point. And I think it’s something especially in US culture where healthcare is tied to your job. In talking with communities outside of the US, I don’t think they feel that as acutely I think as the American fathers do.
Coping
When we talk about solid family functioning, I think it is important to note, that while there may be one parent who’s sort of taking the lead on Duchenne, there really is a team.
I’ve talked with single parents and it’s incredibly challenging. Actually, it’s often moms again who are with their child. We need to talk with those single parents about how important it is that they do have a community, whether it’s their sister or brother or their mother or their best friend. They need somebody – at least a couple people – helping to bear the experience with them so that they’re not isolated.
Whether you have a partner or not, you’re going to encounter overwhelming days. And you’ve got to ask yourself, “What am I going to do to just let everybody breathe a little bit?” And I think that is OK. You know – at least in my house – that’s a mac and cheese night. You know what I mean? Where you’re just like, “I know I planned to make dinner, but I just can’t today.”
It’s so important to give yourself permission to take it easy or to have pizza that night instead of everything else that you wanted to do – it just can’t be pizza night every night. I think that’s the other piece.
So the next day, take a deep breath so you can actually go through it again and do it better.