Guest Voice: I hate Huntington’s disease, but I love my husband
Life as a care partner is exhausting, but I do it for my family
Written by |
I hate Huntington’s disease (HD) with a burning, blinding passion. I hate the worry it causes, what it’s taken from our loved ones who are fighting this monster, and that I’ve had to give up the life I expected to live with my husband, Nathan, who has HD, and our children.
I hate what it’s taken from my HD warrior husband. When we vowed “in sickness and in health,” I didn’t expect total reliance. It took nearly 40 years to find my husband. We’ve been married for 12 years and together for 14. A majority of our time together has been stolen by the disease.
When Nathan was diagnosed on April 16, 2016, I did a deep dive into HD. We’ve pinpointed that Nathan’s symptoms began around the time we started dating.
HD has stolen a loving father from our two children, a partner and husband from me, a hardworking member of the workforce, and a brother and best friend from his siblings.
But we consider our family lucky and blessed.
I know you might be asking how we could feel that way.
For the most part, Nathan hasn’t lost who he is. He’s still the same outgoing, loving person I fell in love with. When we were dating, I watched him jump a small fence at a restaurant to chase down a homeless veteran and give him some cash.
Nathan is still like that. If someone is in need, in his broken speech, he’ll say, “Do we have it? Give it to them.”
Huntington’s steals so much from warriors, but it hasn’t broken Nathan. I say that Nathan may have HD, but HD doesn’t have Nathan.
Much has changed since my husband’s diagnosis
When I was a kid, the teacher would ask our class what we wanted to be when we grew up. Other kids gave the usual answers of doctors or astronauts. Mine was to be an actor.
I was still working toward that dream when Nathan was diagnosed. At that time, I was clueless about the disease. All I knew about HD was the stories I’d heard about Nathan’s mom, who also had it.
Even though I knew life was going to change, I didn’t realize just what being a caregiver would entail. Many caregivers get so caught up in the person we’re caring for that we lose our sense of self. We forget who we are. We find ourselves giving up dreams to care for our person. We don’t realize how much our thought process will change.
A vacation, for example, isn’t really a vacation for the caregiver. It’s more work. You’re the total brains of the operation, thinking of logistics.
Is our destination accessible? Will the wheelchair fit? Do we need to bring ramps? Will we get there to find the hotel has placed us in a regular room without a roll-in shower? And packing! Did I pack enough clothes, pads, and other essentials for Nathan?
Most people think about these things only when they have small children. When we had our son, I used to joke that I had to pack everything, including the kitchen sink. With HD, I’ve added the bathroom, medicine cabinet, and closet.
People who don’t deal with a disability don’t realize how much harder it becomes for the caregiver, too. Caregiving, or being a care partner, as Emma Heming Willis calls us in her book, “The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path,” is not for the faint of heart.
When Nathan is around, everything is sunshine and roses. But that’s not always the case when he’s not around.
I think about who I’d be without Nathan if he dies first. I’ve been doing this for so long, I don’t know how to be anything more than a care partner.
I thought I was alone in that until I joined a planning committee for an HD convention. The topic became a session due to the conversations I had with another care partner.
There’s so much care partners won’t talk about. Things we feel guilty about. Feelings of doing so much, yet not enough.
Caregivers don’t always ask for help. When we do, we may be at our wits’ end. But when we need it most, we can’t always find it, whether it’s help with something our person needs or just a minute to breathe.
Life with HD is exhausting, but I do it for Nathan.
Another thing I say often is that I hate Huntington’s, but I love my warrior.
To submit your own Guest Voice for publication on Huntington’s Disease News, please email your idea to our columns manager at [email protected] with the following included in the subject line: “Guest Voice: Huntington’s Disease News.”
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
