I was on the subway heading to a friend’s comedy show on the Lower East Side when I got a call that changed all the plans I had for me. I answered and got off the train, and from that moment everything moved like lightning. Within days I was home, back in Los Angeles. The need for my care from my mother and grandmother was so sudden and vast that I did not realize the move would be permanent.
At the time, I was living in New York. My goal was to become a late night television writer. I had decided to try my hand at stand-up to improve my speaking skills. As someone who stutters, I thought public speaking was my biggest fear. This was not the case.
To care is to be entrusted with the outcome of someone else’s life. It’s a gift to be allowed to support someone nearing the end of their life, but it also has an emotional impact. At 29, I became my mother’s and grandmother’s caregiver. My grandmother Joyce, then 78, had been diagnosed with dementia four years earlier, and my mother had started showing signs of it at age 59.
I was less than equipped for the journey I was about to undertake. But I realize now that only time could have taught me the lessons needed to be a caregiver.
I failed miserably over and over again.
I dramatically refer to my time in New York as a divine alignment. The energy of the city matched my vibe. New York gave me the autonomy and freedom I needed as the only child of a self-proclaimed crazed helicopter mother. But I also had to deal with the emotional weight of my family matriarchs becoming less and less themselves while I was gone.
I was filled with guilt, resentment and grief over what I had to take on. It was as if God had a personal vendetta against me. It is almost impossible to describe the ongoing state of grief one experiences when becoming a dementia caregiver unless one has experienced it firsthand.
The family context plays an important role in what caregiving may look like. The relationship between my mother and my grandmother was difficult from the beginning. My mother wanted her mother’s love and affection, and my grandmother needed to feel loved by everyone except my mother. This dynamic intensified with their diagnoses. Watching this trauma unfold day by day has become my norm.
I often planned days with my mother outside the home, so she could have an emotional break while another caregiver cared for my grandmother. Joyce was easier to deal with if my mother wasn’t there to come to her aid.
I saw this disease further tear my already torn family apart. My grandmother’s incredibly strong will, her increasing paranoia, the screaming, the refusal to eat – towards the end, everything becomes difficult. But with his death came a new life that I was able to build with my mother.
Being a caregiver for my mom was like living in a different dimension with someone you’ve known your whole life. But in this world, they are only fragments of themselves. And those fragments float over time as you work like mad to retain the memories of who they were that are squeezed out by the memories of who they have become. You simultaneously lose yourself in the process.
Caregiving is daunting, but with the right mindset and support system, it’s doable and can even transform you into a more compassionate, caring, and socially aware person.
Over time, I realized that community would be my saving grace. Our four-bedroom house became an Airbnb that my mom and I ran for about a year before I decided to rent out the rooms longer term. Over time, I became more and more diligent with the roommates I chose, making sure they were aware of my mother’s health. The pandemic has made a difficult situation more difficult as my mother’s decline has accelerated dramatically due to quarantine. Everything in our house has become geared towards his care. The housemates even replaced me when I needed a break from 24/7 care.
Building a community of caregivers for support was the only way I knew to cope. I started sharing our trip on social media. We started with TikTok, then Instagram, then Facebook.
I found fulfillment in teaching what I had learned along the journey. It gave the pain a purpose. I also found mine, other caregivers who were going through what I was going through.
I hope to help other caregivers by showing the way and letting them know that even though the days will be difficult, there will always be another person who will understand, and sometimes they are only a short search away on the internet.
Jacquelyn Revere is a writer and social media influencer in Los Angeles. @momofmymom