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 partnering with her sons has helped them navigate daily care with mutual respect.
Transcript
Well, you want to partner with your person as much as possible because you’re in this with them. I think one way that worked for us is the person you’re caring for really is in charge, especially when they’re 18.
And you try to follow their lead, and you try to partner with them, and you try to say, “OK, how can I help you? What’s going to work for you? OK, we got to do this.”
“How can we compromise and at least get something done?” Or, “When do you want to do this, and what works?” You’re partnering with them — but mainly, they’re kind of, I would say, they’re kind of in charge.
But you’re trying to partner and fit into, “OK, when does this work for you today?” Like, especially when I was Andrew’s PCA, it’s like, “OK, when would you like to do this?” Because, and honestly, some days I’m like, “I’d really like to not do it at all.” I’m like, “Yeah, I get that.”
But I think as long as maybe you share with your person that you’re in it together, so that they’re not alone. I mean, do I wish I could have taken that from them? I guess, if you just kind of embrace that you’re a team and that that person’s not alone.
“You’re not by yourself in this. I know this is not super fun, but let’s get it done so we can move on and do this or do that.” There needs to be a lot of respect too because you’re not the one dealing with all the things.
They would tell me a lot, “But, you’re not the one who has to do all that.” I’m like, “You’re right, I’m not. But I also am the one that wants to support you because I’m your parent. It’s a mutual respect kind of partnership, I would say.
That I’m really listening to what they’re saying, we’re trying to work together to at least get something done. It may not be 30 minutes. It might be 10 minutes of hand splints, but hey, that’s 10 minutes we weren’t doing before. So, trying to work together.
