Good Decision-making Is an Important Trait for Caregivers
My wife, Jill, and I recently bought a new car. While this might not seem related to the Huntington’s disease community, it actually is, because it involves decision-making, a big topic for families who deal with the disease.
I’m thrilled about the new car, as well as another important development in our lives. I found a new job, which means we’ll be moving to the East Coast from the Midwest this summer. This is fabulous news because we wanted to live closer to our daughter, Alexus, who is HD gene-positive like Jill.
Being closer to Alexus means we’ll see each other more often. That is important to us, because when family members have a rare terminal illness, time together — and time in general — are precious. We plan to visit each other more often, which makes us happy.
Jill and I had shared a car for many years, which wasn’t easy. Because we work close to each other, I could drop her off before I headed to my job 10 minutes away. But she won’t be joining me for a month after I start my new job, so we needed a second vehicle.
Buying a car is a simple process for Jill. When she is ready to do something, she’s already weighed the pros and cons. She’s already done all of the research to find the safest and best option for our family at the right price. I didn’t have time to do much research, so I’m glad she did.
She told me beforehand that she wanted to go into each dealership to test drive several vehicles and window shop. That way, we could compile all of the different offers and figure out the best deal.
As we walked into the first dealership, I noticed a look on Jill’s face that I’ve seen before. It told me: “This is where we’re buying the car, because I’ve looked at every deal out there, and this is the best one.”
How do I know this face, you may be wondering? From years of experience. She knows I need to see options, ask questions, and do research. She knows I need the experience of shopping to understand what I want, which is usually what she has already decided she wants. But she understands that this is my process. Because I trust her, we didn’t have to engage much in my process this time around.
The next day, as we were signing the paperwork to buy the car, Jill leaned over and said that at some point, I’d need to take over researching big purchases because she may eventually be unable to do it. She knows her decision-making skills won’t be as sharp as they are now.
Since being diagnosed with Huntington’s in 2018, Jill has been trying to prepare me for being a caregiver. She’s explained insurance, medical information, and a multitude of other things I’ve never previously had a reason to understand. She’s gently reminded me that as a caregiver, it’s important to comprehend what an insurance company tells me, or to be able to talk to doctors about what’s happening.
Every time Jill reminds me that I might need to take over whatever she’s doing at the moment, I’m equally saddened and amazed by her. How many people can talk so casually about their future like that? Or acknowledge that one day, her mind won’t be the same as it is today?
Jill knows she needs to tell me these things so that when the time does come, I’ll be ready for anything. She knows I need the experience of getting ready to be a caregiver and a decision-maker.
I know a day will come when I’ll need to do all of the research for big purchases, and I’ll need to be up-to-date on medical and insurance information. I know that day will come, but thankfully, it’s not today.
Today, I can just be happy that we have a new car with heated seats, and we’ll be living closer to our daughter. Today, life is good.
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