Maryann is a 70-year-old woman with limited ability to speak and who uses a wheelchair. She communicates through a combination of assistive technology, expressive sounds, and non-verbal signals. Somehow, her caregiver, Jandira, can connect with Maryann non-verbally. “It’s difficult to explain how we communicate—some people call it chemistry,” says Jandira. “I know exactly what she wants. It’s a beautiful thing,” she adds.
Ten years ago, when Maryann moved into Jandira’s home through the Shared Living program, something special happened: Jandira’s family expanded. Her home was filled with her two children and Sue, another participant in the Shared Living program. “Shared Living was the best thing I ever thought of doing,” says Jandira.
“Through Shared Living, my children finally had a grandma. In terms of growing up with differences, it’s a good thing for my kids to see. My children have this in their hearts to help people with disabilities. My daughter once said that she’d rather hang out with Maryann than with other children,” Jandira remarks.
Maryann spent her early life at the Fernald School, a state-run institution serving people with developmental disabilities. She went on to live in a group home for fourteen years and then moved to Natick Village to a shared apartment with her friend, Betsy. The units were modified to accommodate people in wheelchairs, and designed so that sinks and counters were lower, doorways were wider, and the overall space was easy to navigate. But when Betsy moved out, Maryann felt lonely.
Choices and Independence
It wasn’t until Maryann joined the Shared Living program that a house became a home. She’s been living with Jandira for the last decade, and she has no intention of ever leaving. “Maryann is very smart. She can voice her wants and needs. She didn’t have any choices at Fernald and now she has choices. Maryann chooses what she wants to wear, and what she wants to watch on TV—she likes old movies,” says Jandira.
Maryann worked at Dollar Tree for about fifteen years. She also held a key role on the Advocates Program Committee, where she and other supported individuals joined the Advocates executive team to help evaluate group homes and influence policies. Today, she attends Advocates’ Day habilitation program in Ashland five days a week.
In their free time, Maryann and Jandira have road-tripped in a camper to Florida, explored New Hampshire, gone apple picking, and enjoyed concerts, plays, and even the casino. Jandira recently got a van so they can have new adventures together. “We have fun,” says Jandira, smiling.
A New Friend in the Home
When Sue passed away, Maryann quietly grieved. She missed her friend. Since then, she has “longed for companionship,” says Jandira. “I told her whatever you want, I’m doing,” she adds.
Not long ago, they met June, a 75-year-old woman who was also in the Shared Living program. The connection was instant, and June moved in immediately. “When we first met June, we fell in love with her. I’m in big trouble now,” she laughs. “June adds so much happiness to our lives. She loves Maryann, and Maryann loves her. They both bring such meaning to my life,” she adds.
At home, Jandira cooks all the meals, making sure that Maryann and June’s dietary needs are considered. “I make my food from scratch. I know that my ladies are well-taken care of, and I feel good doing it,” she says. A caretaker, companion, cook, and fierce advocate, Jandira views Maryann and June as beloved extensions of her family.
Once a week, Jandira has a respite worker step in so that she can rest and recharge. “It makes me feel good to take care of myself so I can take care of them,” she remarks.
So, what’s next for Jandira, Maryann, and June? “I envision fun. We will live our lives to the fullest every single day,” she says.
