Profile: Adrienne's Journey to Becoming a Caregiver

The year was 2011 and my life was uprooted in an instant. I sat on the floor of my Brooklyn apartment with a heart pounding, tears flowing, palms sweating, in a constant state of prayer - anxiously anticipating the phone call with the two words I had been hoping to hear “she’s ok”.  

A few minutes earlier (which felt like hours), I learned that my mom, Hetty, had passed out and fallen alone in her home over 1,000 miles away in Tampa, Florida. She was there by herself for what we think was about 12 hours before a family friend, who came to join her for dinner, realized what had happened. Not only had their dinner plans changed, I knew in that instant that my life would never be the same.

The year before, my mom was diagnosed with Parkinson’s. While hearing this diagnosis had been scary, the reality of her first serious health incident brought on a new level of fear and uncertainty and launched me into my role as a Millennial caregiver.

The next four years were tumultuous to say the least. My own life was not exactly where I wanted or thought it would be at that point. I’d been living independently and had been responsible for myself since graduating from college. Now, that was changing… As the favorite and only child of divorced parents, I knew caretaking would be my responsibility one day, but I always imagined it would happen later in life, when I had a partner and a family support system of my own. I had great friends but none of them were in a similar situation and just didn’t “get it”. 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 I was doing research or making phone calls, or hardest of all, making difficult decisions for the wellbeing of my mom.  The caregiving roles had come full circle, and 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 coupled with her state of affairs was no longer manageable from a distance.  My mom needed me and just like she had always been there for me, it was now time for me to be there for her.

What a relief you may be asking?  Well yes, having mom in close proximity was a game changer.  I moved her into an independent living community in the fall of 2011. Not long after that, her disease progressed and we were faced with the next stage of long-term care, Assisted Living. The search for an assisted living community wasn’t easy as this next phase was providing a reality check. I had trouble imagining my 74-year-old mom among 80, 90 and even 100-year-old’s - all at different stages of aging.  I needed a good balance for her and was so blessed to finally find a good fit. The care she receives is phenomenal and it gives me true peace of mind. But, peace of mind also comes with a price tag.  Along with the physical, mental, and emotional strains of caregiving, the financial strain is considerable.

I am fortunate that my mother planned for this possible scenario, and she is able to cover her expenses without financial support from me.  I would be telling a completely different story right now should I be taxed with my mom’s expenses coupled with my own. 

So here we are, present day - now almost 38, no significant other yet and no children.  What has changed over the course of my journey?  Well, caregiving nearby is a different ballgame than trying to do it from afar.  While I still manage all of mom’s finances, schedule doctor and therapy appointments, liaise with her private duty aides and nurses at the community, it also comes with facetime - spending 3-4 days a week taking a part of the day to commit to mom.  I take her to specialized exercise classes at the local hospital for Parkinson’s patients, 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.  

I have led the most ‘abnormal’ life to-date for someone my age.  I’ve worked in seven different career fields- eventually working as a waitress in New York, despite my college degree, because the money was good, hours were flexible and there was never an issue when I needed to take a few weeks off to go home. Earlier this year, I started an online business management agency. Entrepreneurship has given me purpose and allowed me to show up for mom in ways I was never able to before. 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.

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 8 years, I have taken on so many responsibilities up to this point having done so solo.  As mom continues to progress, I have joined and aligned myself with various caregiving and aging organizations to connect with other family caregivers for support and ideas on how to be resilient in this journey.  A story about my mom and I, recently ran in the Wall Street Journal.  The outreach from caregivers around the country, who read the article, was humbling and continues to help me in my mission to share my story to help support and educate surrounding the complexities of caregiving. Sometimes the things in life we can’t change, end up changing us.  I hope reading this blog will not only help you to feel understood and that you are not alone, as isolating as caregiving feels, but also unafraid and armed with education and resources to help you as you care for your loved one.