A question about caregiving for a spouse caught me off guard
My wife, Jill, asked, “Do men talk about caregiving like women do?"
Ah, spring has finally sprung. Plants are blooming, trees are budding, and the weather is warmer. As a result, my wife, Jill, and I recently decided to take advantage of the beauty exploding around us, along with the good weather, by spending the day in the nation’s capital, close to where we live.
Under a cloudless sky, we walked down Washington D.C.’s Pennsylvania Avenue and were surrounded by throngs of tourists. Among them, we saw a middle-aged woman slowly pushing an elderly man in a wheelchair.
“Carlos,” Jill said. “Do men talk about caregiving like women do?”
Her question struck a chord with me. It reminded me of the silent struggles and the unspoken emotions that often accompany my role as a caregiver for Jill, who is gene-positive for Huntington’s disease. Her question made me realize it was worth writing about, because it touches on several topics that seem prevalent in the news in recent years: societal norms, gender expectations, and cultural nuances. I had never thought about those topics before in terms of caregiving.
As we walked past the man in the wheelchair, I thought about the continuous progression of Jill’s horrendous illness and wondered what I should share with her. Her symptoms, which include chorea (an involuntary movement problem) and cognitive decline, have already begun appearing.
I think Jill mistook my silence for not hearing her, because she asked again.
“I heard you, my dear,” I replied. “I was just taking my time in answering because it’s a really deep question.”
I paused again.
“I really don’t talk about my life as a caregiver with others,” I said. “Instead, I tend to focus more on how you are rather than what I am doing to help you.”
An unyielding commitment
I focus less on myself when I share with others because I believe Jill is the real hero for accepting her disease as well as she does.
Jill responded that she views caregiving as something that transcends gender. She thinks it’s an expression of love, compassion, and unwavering devotion that knows no bounds. The simplicity of her comment made a lot of sense to me.
I’ve been reading about other caregivers in books, articles, and on social media, and sometimes I even interview them. I find solace in the knowledge that, while conversations about caregiving may vary in tone and perspective, the essence of our shared experiences remains unchanged. The caregiving stories of men and women alike are a testament to the resilience of the human spirit, the power of empathy, and the capacity for love.
Sometimes when Jill and I are together, like we were on that day, I realize how lucky I am that the woman I married understands life and love in such profound ways.
Jill always seems to help me understand how to be a better man, husband, and caregiver. Ultimately, both her question and her answer helped me realize that the key to caregiving doesn’t lie in talking about it or what your gender is, but rather how we act — and whether we are pursuing an unyielding commitment to love, compassion, and devotion.
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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Bruce Saltsman
My wife was diagnosed in 2004. I’ve been her caregiver for the past 16 months. She has been declining more in this period than the previous 20 years.