Noreen Vance's mom was so convinced she'd live forever that when she had a stroke, she kept trying to do the laundry for her daughter Angela who has Down syndrome. The result was a decade of chaos and confusion.
Turns out, 72% of caregivers for people with Down syndrome are also secretly worried they'll die before their charges, and 68% are quietly freaking out about what happens next. This is especially true in families where the person needing care has a genetic condition that's now basically just a midlife crisis waiting to happen.
To avoid this, experts recommend writing a letter to your future self. You know, like you do with your ex on social media. "Hey me, I'm dead now, please let someone else take over and make financial decisions." Or, as Noreen Vance did: "Dear Self, if two people agree I'm not up for this caregiving thing anymore, hand over the keys and let others handle it."
Then there's the whole deciding who gets to be in charge bit. It's not just about your mom or dad; sometimes it's aunts, uncles, or even that one friend from college you still follow on Instagram. Who will help make tough decisions? Write down their names and numbers so they don't forget either.
After that, it's time for the fun part: listing all the stuff you need to sort out in case you die first. Government benefits, medical support, housing – try to imagine your loved one's life without you (it's like a bad breakup, but with more paperwork).
Lastly, write a letter of intent with the person needing care that includes everything from their favorite snacks to their preferred method of communication (because, let's be real, they might need to Google Translate your will someday).