Sometimes we caregivers need to learn better self-care
To be at our best, we also have to rest
When, on a recent Friday night after I’d worked a 60-hour week, my wife, Jill, asked me if I wanted to go to breakfast the next morning, my first instinct was to say no. Instead, I said I’d love to go.
The reason was simple: I love Jill and try to place her wants and needs above my own. She has Huntington’s disease, and I’m determined to take care of her. But sometimes I forget she wants to do the same for me.
I do love breakfast, so I was happy to go, but honestly, all I wanted to do was sleep in, hang out with Jill, watch soccer, eat a Gino’s deep-dish pizza for lunch, and take a long nap.
After I said yes, my wish for a chill Saturday was erased, and I was excited to do something Jill wanted to do. Since her gene-positive diagnosis in 2018, the anxiety she feels about going out in public has increased. So when she wants to do something, it’s important for me to encourage her to leave our home.
Right again
The next morning, after we ate breakfast at a diner, Jill asked if I wanted to accompany her on several errands. She said we could just go home if I was too tired. I smiled and explained that as long as I was with her, I was happy to go anywhere or do anything.
After we arrived at the first store, she repeated that we could go home and do the errands another time. I reiterated that I am content when I am with her, and if she needed to go to 100 stores, I wanted to go with her.
She responded that sometimes I irritate her. I wondered what I had done to cause her to feel that way. Was she in the middle of a mood swing, which occurs to those who have Huntington’s? As the disease progresses, it often worsens to the point of combativeness.
“Why do you sometimes behave as if I’m the only person who needs to be taken care of in our marriage?” she asked.
Her question confused me. Then it hit me. I hadn’t explained how tired I was or my plans to relax at home that day. Jill is extremely smart, but she is not a mind reader. So I shared the plans I’d had and the reasons why I needed it.
“Exactly my point,” she replied.
I sighed. She was right.
Again.
But I told her that my heart was in the right place.
“I really want to be a good caregiver, and that means being selfless,” I said.
“Why, Carlos, are you the only one entitled to be a caregiver? Why can’t I also take care of you? Why do you think that I would ever want you to suffer just so I can be happy?” she asked.
Jill is a caregiver, too. When I met her, she was taking care of her late father, who had Huntington’s. It’s one of the many reasons I fell in love with her.
I reached out and held her hand. Jill had taught me an invaluable lesson. In order to help her, I need to take better care of myself by being honest with my wants and needs. And that will make me a better caregiver and husband.
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.
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