“Despite the challenges that you face as the caregiver, you have to keep finding ways to motivate the person you’re taking care of and get them excited about life.”
Leslie, a 51-year-old woman with down syndrome spent her entire life living with her parents. She graduated from high school and went into a day program for adults with developmental disabilities.
After her mom passed away, with no one to assume guardianship, Leslie was placed in a group home.
Down the street, Susan, who spent years working with people with developmental disabilities, decided to open her home to fostering adults with developmental disabilities in need of loving care. Despite the unforeseen challenges, Susan remained optimistic.
Adult Foster Care offers an alternative to residential care for individuals who need supervision or physical help with daily living. Adults who are unable to live on their own and who may not have the option of living with their legal guardians can live dignified lives by having their needs met by a qualified and trained caregiver who lives with them.
We tell the story of how one woman opened her home and heart to caring for two adults with developmental disabilities in need of residential care. All names in the story have been changed to protect everyone’s anonymity.
Leslie’s Transition Into Her New Home
When Leslie came to live with Susan and her family, she was recovering from a total hip replacement. Leslie needed constant monitoring and help with walking, dressing, using the bathroom, getting in and out of bed, taking her medications on time, getting to doctor’s appointments, cleaning, cooking, and eating.
Despite her physical and cognitive challenges, Leslie found ways to communicate with her new family.
“Leslie liked to play the ‘opposite game’ with us,” says Susan. “She didn’t like getting out of bed in the morning, so when I’d move her leg out of the bed, she’d put it right back under the covers. I’d try to get her out of the car for an appointment, and she’d push right back inside. She’d do the opposite of everything I asked her to do.”
The big concern for Susan, and for many parents of adults, was Alzheimer’s disease – the most common form of dementia, a general term for memory loss and other declines in cognitive abilities that interfere with daily life.
“Despite the challenges that you face as the caregiver, you have to keep finding ways to motivate the person you’re taking care of, and get them excited about life,” says Susan.
Leslie became a well-known community member and had a seat at family get-togethers and birthday parties.
In the afternoon’s, she’d be very happy to sit in her wheelchair on the porch, listening to the birds chirp and watching the cars drive by.
Lucy’s Finds a New Home
Months later, Lucy, a 26-year-old in need of a foster home came to live with Susan and her growing family.
Lucy suffered from spina bifida, a type of neural tube defect that occurs when a baby’s spine and spinal cord doesn’t develop properly in the womb, leaving a gap in the spine. The open spine affects how a baby’s brain, spine, and spinal cord develop, and can lead to fluid on the brain, paralysis, and learning and developmental disabilities.
Lucy walked with braces on her legs, and while she appeared to face fewer physical and cognitive challenges than Leslie, she struggled with bowel control, taking care of herself, learning and paying attention. She also lied compulsively.
“Lucy would deny that she had bowel movements in her clothes and she’d become very frustrated when you’d point out her inconsistencies. It was almost like she lived in an altered reality, or a world of her own creation,” says Susan.
Lucy never learned personal hygiene and self-care. Her mom struggled with substance use disorder (SUD) and the absence of emotional and physical nurturance left Lucy in need of foster care.
“It was upsetting to learn that many of her mental deficiencies were a result of her mom’s drinking problem,” says Susan. “She grew up dealing with not only her own challenges, but her mom’s inconsistencies as well.”
Giving the Gift of Life
Susan felt determined to give Lucy and Leslie the gift of life.
On the weekends, Lucy and Leslie enjoyed going out to eat with their family and admiring the rocky coastline from the dinner table. They’d be very happy to sit at the table and make small talk. They enjoyed going out for ice cream and walking around the markets in town.
The Challenges of Caregiving
Susan made every effort to help Lucy and Leslie live dignified lives, but she found herself feeling exhausted and discouraged by the challenges and marginalization they faced.
“When Lucy and Leslie were facing some of their most difficult challenges- I was facing those challenges, too,” says Susan. “After tucking them in at night, I would worry about their future and feel guilty for not doing enough for them.”
“I had very little time for myself,” says Susan. “In the hours that Lucy and Leslie would take a nap or go to their day program, I’d try to get everything around the house done. I still had to take care of myself, my family, and our home, too.
Creating Support Networks
She decided to form a support group for other caregivers fostering adults with developmental disabilities. Once a month they’d meet for coffee and air their challenges and successes of home foster care.
Susan started to worry less and took care of her own responsibilities, outside the role of caregiving. She went on dates again with her husband, and asked her adult children to take care of Lucy and Leslie while they went out.
“As the caregiver, you want to do everything in your power to make their life bigger and better,” says Susan. “You realize that you can only bring them so far in their journey. You have to learn to surrender,” she says. “And to remember that you have a life to live as well.”
Getting Involved With Adult Foster Care
When legal guardians cannot or will not provide adequate care for dependent family members, public agencies, like residential and nursing homes, group homes, and halfway houses often assume the role to ensure the individual has appropriate food, shelter, clothing, and nurturance.
A primary setting for adults unable to live on their own who would like to regain dignity and the nurturance of living at home is adult foster care.
The Massachusetts Council for Adult Foster Care offers the Adult Foster Care (AFC) program, a Mass Health funded program that involves a community member in need of care, and a qualified live-in caregiver. To learn more about the Massachusetts Council for Foster Care, and how you can get involved as a member and/or caregiver, visit massafc.org.
Therapy for Caregivers
If you’re the parent or caregiver of children or adults with developmental disabilities, it’s essential to take care of your mental health, too.
Therapy provides a safe and supportive space for you to share the challenges that you’re facing and feelings related to parenting or caregiving an individual with developmental disabilities. You can learn how to overcome feelings of isolation, fear, and guilt that come up when caring for individuals with disabilities, and gain the tools necessary to regain balance in your life.
To start working with one of our counselors online or in our offices in Amherst, West Springfield, Franklin, Natick, or Wilbraham, contact us today at (413) 343-4357.
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