2011 was the year my life was uprooted in an instant. The year before, mom had been diagnosed with Parkinson’s Disease. While hearing this diagnosis was scary, the reality of her first serious health incident brought on a new level of fear and uncertainty & 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 1-way plane tickets home to help, or hardest of all, having to make executive decisions for the wellbeing of my mom. Everything from life alerts, home healthcare agencies, managing finances & 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 5 years, I moved back to Florida after a decade living in NYC. 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 ALF, it also comes with facetime – spending 4 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 & 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 & 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 & allowed me to show up for mom in ways I was never able to before. I’m caring for my mom, but 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 & trying to make sense of it all. For the past 9 years, I have taken on so many responsibilities and been thrown into the depths of understanding, not only PD & 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 IG @journeyedcaregiver.
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