Caregiving is an honorable position because it involves a lot of love. It also includes questions that begin with, “What if?”
As you may know, my wife was diagnosed with Huntington’s disease last year. Right now, life is “good.” I put that word in quotation marks because her symptoms are just starting. She is experiencing some anxiety, chorea, and depression, but overall, she is sharp as a tack, hilarious, and as smart as she’s always been.
That said, every once in a while, I start to wonder: What if she gets really angry with me?
What happens when she can’t swallow her food anymore?
What if there’s a recession? What if I lose my job and we can’t afford medication or visits to the doctor?
What will happen when she has trouble walking? What if it’s winter and there’s snow or ice on the ground?
What if she continues to not sleep well? How will a lack of sleep affect her health over time?
What will happen to her if I get ill because I am older than she is?
What if we move to another part of the country, which we’ve been thinking about lately? What if she doesn’t trust her doctors as much as her care team at the Huntington’s Disease Society of America Center of Excellence at Northwestern University? (My wife has white coat syndrome, so it’s difficult for her to see doctors or trust them in general.)
What happens to her pride and self-worth when her mobility deteriorates and she is unable to work?
What if one day my boss decides I can’t take a day off because I want to be with my wife every time she needs to see the doctor? I don’t want her to go to the hospital alone.
What happens if my head explodes because I’m overthinking her illness?
OK. Scratch that last question because after years and years and years of overthinking, if my head hasn’t exploded by now, it probably never will. But as you can tell, based on the questions that have been swirling around my head for months now, I wonder about many “what-if” scenarios. These are reasonable concerns for any caregiver, but I have to finish this column optimistically because it’s in my nature to see the cup as half full.
Raise questions and concerns. We’re all human. That’s what humans do. But remember one thing above all others: Love.
Love can overcome any obstacle. Love can climb any mountain. Love can keep us going. Love always, always, always prevails.
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 Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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