Ellen O'Rourke going on a walk with her 22 year old client, Joanna, whom she is a caregiver for.
"I can't remember a time in my life when i wasn't caregiving" - Ellen O'Rourke
Text, images, and interview by: Natasha Kaiser
It's a cold and rainy November day in Buffalo, N.Y. when Ellen O'Rourke prepares for her day. At 52 years old, O'Rourke has been caregiving for as long as she can remember. "My parents would often take, you know, strangers as well as family members into our home if they didn't have a place to stay or live". Ellen O'Rourke has memories from when she was a young girl about her own families caregiving dynamics, and now, after spending 25 years as a teaching assistant and working closely with students with disabilities, O'Rourke has given her life to the practice of caregiving.
O'Rourke prepares for her day in her home at 8am before she heads to Joanna's home in Amherst, N.Y on Nov 22, 2024
O'Rourke's family were active participants in church as Ellen grew up, becoming involved in social and welfare programs for people in their community. "There's so many, so many different things that you can do to help someone else. And I witnessed it as a little kid growing up, and then ... it just became natural for me. It was a natural fit to want to do the same thing."
O'Rourke's home decorated for Christmas.
O'Rourke's home decor on her window sill.
O'Rourke gets a kiss from her dog, Jett, as she does her morning stretches on the floor.
"I started babysitting when I was 13, so and it was a full time job, so every single day when I came home from school, I immediately the house was next door, so that was convenient, but I got the kids off the bus, and I made dinner for them and and I was there maybe just three hours, but It was every single day until the mom came home and loved it. I loved it, you know?"
Though caregiving can be seen as a primarily female dominated field, she wants it to be known that caregiving is within the soul of the individual, that being selfless and understanding is the most important aspect to this job.
Joanna, 22, sits with her dog Molly on her bed before she begins her day. Her father has asked her last name not be included.
Ellen began working as a self-directed caregiver for Joanna roughly four months ago, working Fridays and Saturdays with her while also working as a caregiver to two other clients. The basis of self-directed caregiving as opposed to other forms of caregiving stems from the day-to-day changes as self-directed caregivers take notes from the families of their clients and do activities and things based around what is needed for that specific day.
"You know, seeing the family members be so happy about the care that their their family members are getting. That's probably the most rewarding. And being now with the self direction, I really, really like it, because I'm working not just with the individual, but with the family."
Joanna, who is high-functioning individual with bipolar disorder, and epilepsy, lives at home with her father, Tony. Joanna graduated from Iroquois High School this past spring in June, 2024.
Joanna brushes her teeth with the help of Ellen.
Joanna feeds her pet fish after getting dressed for the day.
Joanna makes her bed with the assistance of Ellen.
Helping Joanna begin her day is how most days start off for Ellen when she works with her, working with her. Helping her to do tasks that many of us take for granted as typical daily activities that are harder for her to accomplish without reminders and assistance. From brushing her teeth, getting dressed, and making her bed, Ellen works to reinforce these habits with Joanna so that she can become more self-sufficient.
Joanna as a young girl.
Joanna plays a vet simulator game on her tablet in her families home office.
Adopted as a baby, Joanna has many fond memories of her childhood and the walls of her family home are decorated with photos of her. As an only child, her family has always been dedicated to ensuring that she has the support she needs to flourish and become as independent as she can be.
From left to right, Ellen, Tony, and Joanna, prepare a shopping list of items needed before leaving to go to the store.
Joanna and Ellen arrive at Aldi.
Joanna and Ellen look for carrots in the produce section for the chicken noodle soup they plan to make for lunch.
Going out into the community and getting out of the house is one of the key highlights of Joanna's time with Ellen, ensuring she is exposed to different experiences. and learning opportunities. This exposure to different stimuli helps Joanna craft a better control over her emotions and reactions to outside factors that might have previously overwhelmed her.
"We frequently go shopping together, it's one of her favorite things to do. She loves shopping at Aldi's."
Ellen and Joanna discuss the calorie information on a bottle of sparkling water.
Ellen assists Joanna in checking out their items at Aldi.
Allowing Joanna to practice life skills on her own while assisting her when needed is a staple in how Ellen works with her. Encouraging Joanna, who has difficulty with her speech, to use her words to describe what she wants and why as well as what she can do better next time in the event something doesn't go as planned.
Joanna tells Ellen about a game she has started to play on her Android tablet.
"Normally I'll have her sit in here and let her spend time on her Android tablet while I prep the ingredients then she'll come in and help me put everything together, she loves to cook."
As a caregiver to Joanna, Ellen works on instilling practical life skills into her repertoire as well as teaching Joanna good and healthy life habits to further her quality of life. Ellen encourages her to be active to help Joanna stay healthy as well as teaching her how to be more independent.
O'Rourke feels her experience caregiving has been generational, from seeing her own family function as caregivers and her own experience being a mother, she feels her love of taking care of people is ingrained in her DNA.
Ellen gives Joanna directions in the kitchen before they begin cooking lunch.
"I love meeting new people, it's my favorite thing to do, everyone is so nice" Joanna says, coming home from her shopping trip with Ellen at Aldi.
Joanna's eagerness to learn and try new things is ever apparent in her relationship with Ellen, looking to Ellen for guidance and takes her listens to her suggestions when they are given. Her relationship with Ellen has helped her develop strong social skills and assisted her in communicating her emotions.
"I started working with Joanna over the summer, and even though I've only been working with her for about 4 or 5 months, I feel like we've made so much progress. Everyday she's learning new things and it's so rewarding to see that."