Being a Caregiver Means Being Involved

One of my recent columns was about the Huntington’s Disease Society of America’s annual convention. I participated in a few groups over Zoom because I have to be involved in every step of the journey. We have known about this conference for years because Jill’s mother tries to attend when she can.

Jill and I haven’t attended any conferences in person, mainly because they are usually scheduled in early June. Jill works in a school, so in June she is busy wrapping up the school year while preparing for the next.

Or so I thought.

When the opportunity to “attend” the convention arose, I asked Jill if she would like to sign up for any of the breakout sessions. It would have been very easy for her to participate. She could log on and listen from the comfort of our home. But she declined. I was surprised since Jill is really invested in the progress being made by the Huntington’s community.

I didn’t think much of it until the next day when I came home and Jill was talking on the phone with her mother. She was discussing the sessions her mother “attended.” When she hung up, Jill told me her mom had heard about new medications for treating, and possibly curing, Huntington’s — at which point the question came to me again: Why didn’t Jill participate?

As a journalist, I like to ask questions and try to figure out why people do what they do. It helps me understand the world in some small way.

After I asked her why, she told me that she doesn’t really like the chemistry part of it. She understands medications since she was a pharmacy technician for many years, but she just didn’t find it interesting enough to listen to. Plus, clinical trials don’t always have a positive outcome, and she has a hard time getting invested in something before it has been proven to work. She has enough hope, so no need to think about things that may never come to fruition.

Then I asked her why she didn’t try any of the support groups. She replied that she didn’t feel she needed to belong to one at the moment. Her parents were social workers, so she’s used to supporting others. This usually leaves her feeling unsupported in support group situations.

The last thing she explained was that she really trusts her neurologist and psychiatrist to keep her informed of things that work for Huntington’s patients. It’s like eating out, she explained. There are thousands of ingredients in stores to choose from, but no one picks up the food they will be served. You trust that the chef picked the right ingredients for the meal that you order.

I couldn’t argue with that logic, but I will keep being an advocate for Jill and will continue to monitor developments made in the Huntington’s field so I know that I am taking care of her the best way I can — by showing up and being involved.

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