Seth Rotberg holds a master’s in nonprofit management and is based in Chicago, Illinois. He tested positive for Huntington’s disease in 2011. He explores simple ways to ease difficult caregiving conversations.

These are never easy discussions to have with your loved ones, especially since we know that the caregiver may be more aware of the decline than the person with HD. We know that people with HD may not be self-aware or might be in denial of starting to show symptoms. 

And I even remember when my family had to have these conversations with my mom, and we had to take away her license because it wasn’t safe for her to drive, not just for her but for the safety of others. But that’s very challenging when you can’t make those decisions on your own. 

You know, this also meant I had to take on additional responsibilities at home, such as driving my mom to appointments or taking her out to run errands, and overall, growing up a lot faster than my peers at the time.

But what’s important is that when you approach these conversations, it’ll depend on the person with HD and how they may react to this news because that’s kind of life-changing, because they’re losing the ability to make decisions on their own.

And so sometimes you may have to have these conversations with a few other people or some type of — you could call it a small intervention. You know, really kind of sit them down and talk to them about why it’s important to take over as a decision-maker just because it’s what’s best for them.

I personally believe, though, the earlier you talk to your loved one about this, the better. So for me, I would want to talk about this ahead of time, write this down in some type of document — or you could call it like a contract — because that way, you know, we can always go back to that document of, “Hey, this is what we discussed previously.”

People with HD have a cognitive decline, so having something written down can help kind of jog the memory and discuss kind of, “How do we navigate these different situations?”