In part two of this conversation, Norman Simpson shares his journey supporting his son with Friedreich’s ataxia (FA), from navigating the daily realities of caregiving to encouraging independence in meaningful ways. He reflects on the importance of patience, mutual respect, and finding moments to reset as a family, including caring for himself and his marriage while supporting his son’s evolving needs.
Transcript
So, FA caregiving is, is, is challenging, and I work with all my caregivers to teach them to, to, to use patience, and to generate a certain amount of respect between the two of them.
You know, we have several caregivers, and it’s like, you know, you’re, you’re making money to take care of him. That’s one level, and that’s good. But at the same time, I need you to know that he’s a person. He’s somebody that’s right here. He has feelings, you know? He doesn’t like to ask for help, but when he needs help, I really need you to be there for him.
I see that level of independence. And I kind of, like, out of respect, like, I want you to be independent, and I need you to be independent. At some point when he went to college, I said, “You know what? You’re living here, and I’m just going to treat you like you’re in a dormitory. Do whatever you want because you need to get your classwork done and everything else.”
Well, you know, that translated to him being, studying to 4 or 5 in the morning. And I can’t knock it because I can remember doing that myself, and everybody saying, “Oh, you can’t do that. You can’t do that. He has FA.”
I didn’t say didn’t have a toll on him on his physical body because of the mitochondria stuff. But it was something that he had scheduled out where he was doing it. And so we had facilitate that he has caregiving at night also, so that, you know, maybe we can sleep, the other caregivers, and be more able to help out.
For caregiving, it’s finding out what they need and helping them get out to get, get things going on and what’s, what they actually need. And, you know, you have to learn to, to recognize that this is an illness. It does have an impact on everything that he does. It has an impact on us.
Deborah and I, for caregiving, also have learned to have date nights, just us. We needed to go. Deborah and I just got back from Spain because, you know, it’s the first time in eight years we’ve had a vacation, just the two of us, and it was just kind of a chance to reset.
And it turns out it’s a reset for him, too, because we’re always there. He’s always waiting for us and needing things from us, and then all of a sudden we’re not there. And it’s kind of a certain reality, and we’re not getting any younger. And I want him to be as independent as possible. And I plan to be here as long as I can. Apparently, according to my wife, she’s going to kill me any minute, so that might not be longer. So I have that on documentation. No.
It’s, we, we had a great time. He had a great time. And when we all got back together, it was really amazing. And so, it’s kind of this thing where, if you’re a caregiver, you know, I, one of my caregivers had been there for the whole week, above and beyond.
And so she’s off today. You know, I’m just paying her cash out of my pocket, just because it’s intense.
Nobody can do what we do in the context of parents being caregivers, and nobody can caregive for our children as well as we do.
