Lisa Littleton, who is the mother of two sons with Duchenne muscular dystrophy, one passed and one living, is a full-time caregiver. She shares how she balanced supporting independence with planning for the realities of Duchenne.
Transcript
It was a little challenging. Like I said, I have two sons, and they approach it differently. One was very, “I need your help, I want your help” — that would be Andrew. The other one was like, “Forget it, I got this, I’m an adult.”
What I would say when they turn 18 is I know they don’t want to do it, but I would really get them to do that five wishes, to get it notarized. So, you know what that person wants if something unexpected happens.
I wish we wouldn’t have lost Andrew the way we did, but I was really grateful that he had done that, that we had gotten that done. It was notarized. You know, there was no question on what he would have wanted. And that gave me a lot of peace of mind because it was right there.
I still haven’t gotten Reese to do that yet, but he knows it’s important, so I’m hoping he will. I would say that was a tough one because, you know, who wants to talk about that? But if you could get that, that would be helpful.
There’s also a book that I wish I would have had, and it was about explaining muscular dystrophy to teachers and caregivers and one thing that it took me a while to realize in the mental health piece is dystrophin also affects your brain. So, that’s a whole thing with behavior and all that.
So I think the biggest thing I would say is if you can get them to be comfortable and just say, “Hey,” because, you know, I have a living will.
The way I approached it with Andrew was, “Hey, I just want to know if something happens that we’re doing what you would like to be done.” Like, I know that for me, and I told him how I would do it, and he decided how he would do it. I think that would just be helpful based on our experience.
