Daughter’s life instantly changed with mother’s Parkinson’s diagnosis

In 2011, my life was uprooted in an instant. Mom had been diagnosed with Parkinson’s Disease the year before. While hearing this diagnosis was scary, the reality of her first serious health incident brought on a new level of fear and uncertainty. It also launched me into my role as a Millennial caregiver at 29.

The next four years were tumultuous, to say the least.

My own life was not exactly where I wanted/thought it would be at that point. I was on the brink of turning 30, trying to figure out what I wanted to do when I grew up.  As an only child of divorced parents, I knew caregiving would be bestowed on me one day, but I always imagined it would happen later in life – when I had a partner and family support system of my own.

Now I felt like I was living a double life.  It almost felt like a dream – this balancing act, where one minute I was living it up with my friends, and the next doing research or making phone calls, booking one-way plane tickets home to help, or hardest of all, having to make executive decisions for my mom’s wellbeing. Everything from life alerts, home health care agencies, managing finances and long-term care insurance policies to assistive devices, senior living, med management, etc.

The caregiving roles had come full circle; I was now a mother to my mom.

Fast forward five years. I moved back to Florida after a decade living in New York City.  The stress, anxiety and fear of mom’s state from day to day was no longer manageable from a distance.  What has changed over the course of my journey?  Well, caregiving nearby is a different ballgame than from afar.  While I still manage all of mom’s finances, schedule doctor and therapy appointments, liaising with her private duty aides and nurses at the assisted-living facility, it also comes with face time – spending four days a week taking a part of the day to commit to Mom. I take her to specialized exercise classes, for walks (AKA pushing her wheelchair) in the park, a restaurant to have a meal or the mall to continue to provide her with some semblance of a “normal” life and mother/daughter relationship. She was recently re-diagnosed with MSA – Multiple System Atrophy, a progressive neurodegenerative and autonomic disorder, and, with each passing week, I continue to see the decline.

I have led the most “abnormal” life to-date for someone my age. I’ve worked in seven different career fields, and, as of the beginning of the year, started a virtual online business management agency, because let’s face it: Holding down a full-time job is hard. Entrepreneurship has given me purpose and allowed me to show up for Mom in ways I was never able to before. I’m caring for my mom, but I’m still very young and trying to fulfill my own goals and dreams. The caregiving journey is a labyrinth of unexpected twists and turns; some days you’re strong, some days you are just getting by and others you are on the bathroom floor crying and trying to make sense of it all. For the past nine years, I have taken on so many responsibilities and been thrown into the depths of understanding, not only Parkinson’s and MSA, but the aging population. Sometimes I think I’m crazy for trying to scale a business, date and have a social life all while caregiving, but I know there will be a time when Mom isn’t here and I don’t want to be left with nothing.

Follow my caregiving journey on Instagram @journeyedcaregiver.

Adrienne Glusman

A writer and entrepreneur in Florida, Adrienne has been the caregiver for her mother for the last nine years. Caregiving, she says, “has provided purpose in my life.”