The day my husband was diagnosed with early-onset caregiving
How a Parkinson's diagnosis affected this columnist and her spouse
It’s a big deal to be the girl who has Parkinson’s. It’s also a big deal to be the guy whose wife has Parkinson’s.
Back in September 2013, I was diagnosed with early-onset Parkinson’s disease at the age of 36. What no one told us is that my husband was also being diagnosed — with early-onset caregiving. It’s not a role either of us asked for, but I’m so thankful he’s been there for me.
I’ve never really liked the word “caregiver” in reference to a spouse. It sounds so clinical. Yes, it’s a good descriptor of who has primary responsibility for the day-to-day care of the “patient.” But I don’t much like being referred to as a Parkinson’s “patient,” either. I have a husband, and we care for each other. But my diagnosis meant that the physical care and household chores have become increasingly lopsided.
When you take your wedding vows and promise to care for each other in sickness and in health, you think it’s something that’ll come far down the road; no such luck for early-onset Parkinson’s.
When a chronic illness enters a relationship, the “sick person” gets a lot of attention. It affects every area of life. You see everything with new eyes. Do we need to live somewhere else or eat something different? When do we need to see doctors or go for treatment? When will it get worse, since we know Parkinson’s doesn’t get better?
But these same unknowns and new responsibilities and questions also hit your partner hard.
And yes, the “sick person” in the relationship may be going through pain, discomfort, or fear. However, the fear and uncertainty are also front and center for the caregiver. They need care, too.
Making adjustments
One thing I do is check in with my husband. I encourage him to go out with friends without me, to snowboard, go camping, and take advantage of activities my body isn’t capable of doing or that I never liked much, even when I could do them.
I know there’s been plenty of times he’s had to say no to things because of my medical needs. I mean, the poor guy had to spend his 50th birthday in a hospital waiting room because that was the only day the surgeon was available for my deep brain stimulation (DBS) surgery!
Thinking about him has sometimes pushed me to consider how much I can do on my own, too. It’s easy to fall into caregiving ruts. For example, my husband has taken over nearly 100% of our cooking and grocery shopping needs over the years. But recently, after having my second knee replacement, I can stand for extended periods of time and I’m starting to cook dinner more.
It would be easy to let him continue to cook all the meals. But who knows how long my body will let me take back this task? I try to be mindful of doing what I can to help around the house as long as possible or to pick up the slack when I’m having a good day, since it all falls to him on a bad one.
We’re lucky that I’m doing well. DBS surgery has alleviated many of my symptoms. Taking care of other mobility issues, including replacing both knees, has made it safer and easier for me to move around my home. My husband can give up caregiving from time to time, and I think that’s important.
Parkinson’s isn’t a disease that affects only me. It’s a big deal for everyone who loves me, which goes triple for my wonderful husband. And that’s something I’m genuinely thankful for.
Note: Parkinson’s News Today 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 another 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 Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Comments
Margery Pearl - Gurnett
This was written in a lovely manner. I am a caregiver for my husband. He is still able to do most everything, but I am reminded that this is a progressive disease. He is very thankful and that makes it all worth it. We don't always get to write the entire script for our lives , but I intend to do my life with as much grace as possible.
Beatrice Yoder-Leyba
You are young and I feel for you. My husband is 77 and none of the new possibilities are available for him due to age and other medical challenges. So for us only one road downhill.
BUT
we hope and are thankful for the good ON moments, The good moments with the not so good cast aside not important anymore.
You may just be young enough to be part of little miracle near cure or at least better management opportunities. Wish this for you, B
Derek Fry
Well recognized and said. As a caregiver of a young wife with, initially PD then through to MSA I'm well aware of the speed of change and need for commitment.