Many caregivers experience a sense of loss for the person they were before
Written by Jamie Askari | May 26, 2026
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.
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