Earlier this year, we launched a new social media campaign, Humans of Caregiving—inspired by the incredible stories collected and shared by @humansofny.
To that end, we’ve been collecting stories and photos from YOU, our followers—caregivers who have been generous enough to share a peek into the human side of their caregiving journey.
In today’s post, get to know the caregivers of the Caregiving Advice team!
Meet Michelle, who cares for her daughter with special needs
Michelle is the founder and creator of Caregiving Advice. Her caregiving story has been lifelong, and it’s a story of strength, grace, and “hands-on” love.
I’m the oldest of 5 girls, and my youngest sister was born when I was 14. Caring for them just came naturally, and I loved doing it—except for dirty diaper changes!
Around age 11, I started *officially* babysitting for my sisters—and for infants & toddlers in our neighborhood. While in college, I started working in senior living communities, first as a personal care aide, then an activities director, and eventually, a communications coordinator. But the titles didn’t really matter: I always ended up being a hands-on caregiver. I changed incontinence garments, assisted with bathing and feeding, drove residents to dialysis appointments, led a trivia circle and chair exercise group, and much more. You name it, I did it, and I burned out pretty quickly because of it.
In 2006, I started working for the Alzheimer’s Association and worked with family caregivers and state legislators as an advocacy director. Then, my beloved grandfather developed Lewy Body dementia, and my world was turned upside down. After he passed away, my grandmother (his wife) had several strokes and required extensive care too. She passed away in 2017.
And in 2013, I became a mom and caregiver to my daughter, who has complex special needs.
The most difficult part of all of these caregiving experiences? The unknown. Feeling helpless and hopeless. Feeling like no one gets it. Feeling like I’m not heard. Feeling like I just can’t do it anymore. I worry the most about what would happen if I can’t do it. Then who will?
I try to maintain order and control where I can, just for me. I love organizing things and making lists.
If I got the chance, I’d love to travel abroad, or even just hide away in my writing room with a few favorite books, pretty stationery, and a bottomless pot of strong black tea.
If I could tell you one thing about my caregiving life, I’d say don’t let the smiles on social media fool you. The smiles are genuine, but they’re often very hard won.
Meet Ruby, who cares for her siblings
Ruby Baker is Caregiving Advice’s design expert. She’s also been a caregiver since she was 9.
My parents got divorced when I was 9 and I’m the oldest of four. I’ve been helping to take care of my siblings ever since!
The hardest part of caregiving is balance. Finding time for myself and being there for my siblings is hard and I’m still working on it. I’m currently working on my MFA at Vermont College of Fine Arts. So, any of my grad school work is for me and my degree, but I often worry about the wellbeing and futures of my siblings.
I’m still trying to navigate the best way to be there for my siblings every day, so no two days ever look alike.
If I ever got unexpected time off, I’d love to go visit my friends! None of my friends live close to me, and I only get to see them every once in awhile when I plan way ahead of time.
Meet Eliza, who cares for her grandmother
Eliza Brown is Caregiving Advice’s social media content creator and tag-teams caring for her grandmother with her mom.
This picture encapsulates the hectic, making-it-work nature of my everyday routine. Working while being a caregiver is the busiest, most chaotic period of my life thus far, but has also allowed me to have a life that fills me up. My day begins by doing my work for Caregiving Advice while waiting for my grandmother’s coffee to brew, before she wakes up. But she’s an early bird, so I’m often typing up Instagram captions between brushing my teeth and rushing out the door; posting to Facebook before buckling my seatbelt in my car in the driveway; responding to our awesome followers on my lunch break.
After my work day with 3rd and 4th graders (pre-COVID), I head home to prepare dinner, then head back over to my grandmother’s house. Since she is receiving at-home hospice care, my family and I fill our plates and dine around her bed. My mom and I then work together to get my grandmom ready for bed while my brother cleans up dinner, and my mom and I take turns sleeping at my grandmom’s house.
Having another job while being a caregiver means my “me time” is squeezed into the tail end of the day. Sometimes I catch up on a tv show I enjoy, or I’ll write a letter to one of my pen pals, but most nights I simply collapse into bed with a good book and enjoy the silence!
I often feel as if my brain is in a million places at once: Is my overnight bag packed and in my car for tomorrow? Are the spaghetti noodles at our house or my grandmother’s? Do I need to be at work early for a meeting? The questions and running around and making mistakes is constant, but the best part of it all is getting to hang out with my firecracker of a grandmom every day while doing work that I really truly love and care about doing.