Aging Child, Aging Parents
In addition to improving social inclusion, and advocating for improved mental and physical health options, greater longevity for adults with Duchenne also means having uncomfortable conversations. Quite a few, to be honest.
Parents No Longer Caregivers
One such conversation ought to be about the fact that eventually, parents may not be able to continue caregiving – whether due to injury or death. A plan needs to be made far in advance of when that situation actually arrives.
Questions to help with brainstorming include: Where will the adult with Duchenne live? Will a sibling step in to help out? Will personal care attendants need to be hired? Can those extra expenses even be afforded? There’s a significant amount of planning involved with this topic and it’s much better to decide the plan while there’s plenty of time to research and consider the options.
Advanced Care Directives
Discussing advanced care directives is yet another uncomfortable – and important – conversation. Unfortunately, it’s an easy one to avoid because talking about death and dying is difficult for most people.
Despite the discomfort, conversations about directives need to be had for both the adult with Duchenne and his or her parents. Even if you personally don’t have particularly strong opinions about what happens to yourself, extended family is almost always grateful when they don’t have to make the decisions for you.
Lastly, greater longevity for our adults with Duchenne also means planning for a time when the adult outlives his or her parents. However unlikely that it may seem right now, amazing progress has been made with medical care, and it’s happening more and more often.
Truly Living Life
Our community has fought for so long and so hard for better health care, treatments and cures for Duchenne, we must plan for when it finally comes to fruition. We must ensure that even after parents pass away, the adult with Duchenne still has the support needed to pursue quality health care, achieve self-efficacy and self-determination, and truly live life.
Thank you to psychologist Dr. Natalie Truba (of Nationwide Children’s Hospital) for identifying these “elephants in the room” in our June 2022 webinar.
More to Consider