Reflecting on the many unexpected effects of being a Parkinson’s caregiver
Many caregivers experience a sense of loss for the person they were before
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My husband, Arman, who has early-onset Parkinson’s disease, and I don’t get to the movies very often. Instead, we prefer to wait and stream films from the comfort of home. But when the movie “Wicked” was released in theaters in November 2024, there was no way our small TV with its basic speakers was going to cut it. So we ventured out to the theater.
Since it was Thanksgiving week, two of our children were home to see it with us, which came with the added bonus of helping us at the theater. While it was wonderful to share this movie experience with them, it was also great to have the help, as places like movie theaters have become a significant challenge for us, so we rarely go. Navigating the crowds can be overwhelming, and seating is often complicated for those who use assistive devices, so having our children along to assist made a world of difference.
The music, the sets, and the costumes were as perfect as I had imagined. It was beautiful to see Marissa Bode, the actress who played Nessarose, as she is the first actor to use a wheelchair in real life to portray this character.
Although the movie was a few years back, I still often listen to all of the music from it. As I was cooking dinner the other night, the song “For Good” came up on my playlist. It’s the kind of song you want to sing at the top of your lungs, no matter how terrible you sound! As I was chopping vegetables and belting out the song, I thought about its lyrics and realized there are many parallels to my role as Arman’s caregiver.
The line “I have been changed for good” hits close to home, as I have actually changed immensely since my husband’s diagnosis. There is a past version of me that got left behind somewhere along my caregiving journey. Bits and pieces of me slowly shed as I evolved into the person I am today. That is a person I don’t even remember anymore.
What I do remember is that she slept peacefully through the night, lived without constant fear, walked into rooms without scanning for fall risks, and didn’t hold her breath as she waited for the next crisis. She was carefree, calm, and easygoing, with a lightness about her. She was able to relax and enjoy the moment. I hope that my children remember her, especially on the days that I don’t particularly like the new version of me.
Addressing a sense of loss
Many caregivers experience a sense of loss for the person they were before stepping into this role. It’s common to long for the simplicity and peace of life before caregiving took over, and to wish you could bring back that former version of yourself.
Hearing the character Glinda sing, “Like a comet pulled from orbit/ as it passes a sun,” takes me back to the overwhelming life change that Arman and I experienced, caused by his diagnosis when he was in his 30s. This event affected nearly every single aspect of our lives, and our children’s as well. Similar to a comet’s path altered by a star’s gravity, his diagnosis changed the entire trajectory of our future.
The lack of direction I often feel is perfectly described in the song when the character Elphaba sings: “Like a ship blown from its mooring/ by a wind off the sea.” I wonder if I will ever find stability as a caregiver, as I’m constantly vulnerable to the unpredictable storms that Parkinson’s brings. Some days it feels like I’m lost at sea without a life preserver in sight.
Beyond all the hardships, changes, and challenges that Parkinson’s has brought into my life, I want to emphasize the “for good” part of the line: “I have been changed for good.” I feel a strong sense of gratitude because I’ve become a better person due to Parkinson’s disease. I’ve developed a deep sense of patience and empathy, not just for my husband, but also for others facing their own struggles. I’ve learned to advocate for his needs and find creative solutions to daily obstacles. These are strengths I never imagined I would possess, and they have enriched every part of my life.
Over the past 15 years, I’ve evolved into a stronger, more capable, vastly independent, and more resilient person. Caregiving rewired me into a new person. This new me learned to stretch far beyond what feels possible, doing things I’d never dreamed of doing. I’ve learned to let go of the parts of myself that have gone missing and leave them in the past. And yes, as the song says, “I have been changed for good.”
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.
David Marsh
I to have had the role of carer for my partner these past fifteen years. Unlike you I was in my early 60’s and recently retired. Hilary’s diagnosis was a bombshell for her and was followed by many weeks of deep depression. Over the years we have learned to live with Parkinson’s although recently she has become reluctant to leave the house and to socialise with any one other than close family. This has a huge impact on my life, no diners out, no day trips and definitely no holidays. At times I feel my world is closing in around me. The family are good and I’m sure they will help but as all you carers will be aware our roles can involve some extremely personal assistance that our partners my not wish anyone else doing. Having said that life is good and 50 + years ago we signed up ‘for better, for worse. In sickness and in health!’❤️
DAVID SLIFKIN
Responding to Jamie Askara's article - The article you wrote was spot on for me. What you identified mirrors my expierience as a caregiver. It completely changed me for the better and the person in the ways you mentioned and the person I was before no longer exisits. I wonder why it was necessary for my wife to have Parkinson's / Dementia for this change to take place. Despite the challenges I am more comfortable in my own skin.To someone other than yourself who has not expierienced this it would appear strange.
Marjorie Weiss
Your column gives me a lot to think about, Jamie. I’ve never thought about the before me and the PD caregiver me in such a contrast before. It will be worth my meditating on. I also really like the creativity of using the song lyrics in the way that you did.
Janet Knosp
I totally enjoyed this story because it helped me remember I’m not the only one dealing with this terrible disease. I’m lucky in that my husband was officially diagnosed at age 70. I feel early onset would be far more difficult. It did however change our retirement fun.
Debbie Hanson
Thank you for your story Jamie. Our lives have become much smaller since my husband's diagnosis at age 53. I, too have changed along with my husband and wonder if my children remember me before Parkinson's.