When Mary MacDonald’s mother, Margaret, was diagnosed with dementia, her life was turned upside down.
“I was 35 at the time, and I didn’t know anything about caregiving,” MacDonald said.
What followed was a journey she describes as an “avalanche.” She left her corporate job to care for her mother as her cognitive and physical abilities deteriorated. Though she still lived in Massachusetts, MacDonald drove thousands of miles back and forth to upstate New York, while navigating her mother’s complicated medical appointments.
She knew that she wasn’t alone as a family caregiver, yet the experience was isolating.
The stress and burnout inspired her to found Rest Stop Ranch in Topsfield after her mother passed away in 2008. The “ranch” is a garden retreat designed for long-term caregivers, who MacDonald says often feel overlooked and in need of support. They can come for a break from caregiving, enjoy nature and find some peace.
There are approximately 780,000 unpaid family caregivers in Massachusetts, according to AARP — and that number is only expected to grow in coming years. Whether caring for an aging parent, a loved one with dementia or a family member with disabilities, they are under pressure every day.
“Caregivers need help,” said Jennifer Benson, state director of AARP Massachusetts. “They are essentially saving us about $15 billion in the amount of work that they do. If they weren’t there doing that job, the need still exists.”
Benson says that without unpaid caregivers, families would need to rely more on nursing facilities and in-home aides. But a worker shortage across many human service fields is making it harder and harder to fill those roles, putting even more strain on families.
“We don’t have enough professional or paid caregivers to meet the demands that we have,” Benson said. “So family caregivers are taking on more and more of that work, essentially.”
The average caregiver is around 50 years old and provides about 24 hours of care a week, according to AARP. A 2023 survey conducted by the AARP found 4 in 10 caregivers “rarely” or “never” feel relaxed. Yet, 82% say caregiving gives them a sense of purpose.
“The issue cuts across every income level, every social, racial demographic,” Benson said. “Massachusetts has some of the best laws and regulations around caregiving. And yet, we’re still seeing this need.”
An accessible retreat
On a recent April day, MacDonald took a deep breath as she observed the daffodils popping up around Rest Stop Ranch’s garden. It features a koi pond, a treehouse and a bonfire pit overlooking a lake.
The ranch provides caregivers a break from the clinical environment of hospitals and doctors’ offices, and gives them a chance for a bonding activity with their loved one.
“It’s most important that the long-term caregivers have a place for respite,” MacDonald said. “So that they could come with their person and have a breath of fresh air and maybe bring a picnic, maybe bring poetry.”
“We don’t have enough professional or paid caregivers to meet the demands that we have."Jennifer Benson, AARP Massachusetts State Director
MacDonald originally started Rest Stop Ranch with dementia caregivers in mind, and it now welcomes people with all types of disabilities as well as people on the autism spectrum. The retreat was designed to be fully accessible for anyone who uses a wheelchair, cane or mobility device. MacDonald’s mother used a wheelchair for the last year of her life, and wanted to be able to get as close to flowers as possible.
The nonprofit also offer a memory cafe, an informal welcoming space for people with dementia to gather, and one-on-one counseling for caregivers.
Many visiting caregivers are surprised by the effects of nature.
“They don’t even realize the level of chronic stress that they’ve been under,” MacDonald said. “We see people physically letting go of layers of their stress, and the tears start to flow. And then they start saying, ‘Oh my gosh, I’m so sorry. I don’t know why I’m emotional.’”
J.D. Martz, who was at the ranch with his wife, Caitriona Daly, says Rest Stop Ranch has helped “rekindle” his love of nature and hiking. He has used a wheelchair since a spinal cord injury eight years ago.
“What’s nice about this is I can kind of get out. I can be amongst nature, trees, flowers, gardens and be cruising along these pavers without really much issue at all,” he said.
How legislation could help
A number of local organizations offer caregiver support. One is Boston Senior Home Care, which offers free services, including support groups, help finding resources and funding for respite, allowing a family member to pay for a secondary caregiver or a temporary stay at a nursing facility for a few hours or a few days.
In the coming years and decades, the challenges facing family caregivers will only increase, many advocates say. As the population ages, more people will need support as they age — and more young people are becoming caregivers.
“As people are waiting longer to have children, those parents are aging with a larger gap in between them and their children,” Benson said, meaning more of those children will find themselves in caregiving roles for longer periods of time.
State Rep. Michael Kushmerek was one of those young caregivers. He unexpectedly began caring for his parents due to substance abuse and mental health challenges when he was in his early 20s, while finishing his college degree in Fitchburg.
“It was emotionally and physically draining in a way that really, quite frankly, almost just broke me over the course of a decade,” he said. He juggled his caregiving responsibilities along with graduate school and living paycheck-to-paycheck.
“Whenever I thought I would have it figured out, there would be a new, often, medical challenge or human services challenge where I wouldn’t know how to navigate a system or there just weren’t services out there for somebody in my situation trying to take care of their parents,” he said.
He is the co-sponsor of legislation on Beacon Hill, An Act Supporting Family Caregivers, which would provide a tax credit to offset caregiving costs and provide vouchers for caregivers to hire temporary professional help for a few hours or a few days. It would also establish a state advisory council to focus on family caregivers.
“[There are] 780,000 caregivers in the Commonwealth and each struggle to make ends meet emotionally, physically or financially each and every day. We don’t talk about them enough. We don’t celebrate them enough,” he said.
A mother tries to find respite
For parents of kids with disabilities, caregiving can take a lifelong physical and mental toll, and respite can be hard to find.
Sarah Franey’s daughter, Anna, was born with cognitive impairment, autism and muscle tone issues. As a mother, Franey faced an overwhelming and uncertain future.
“It brought fear, it brought deep concern, feeling of not knowing what to do, not knowing where to start,” she said.
As Anna got older, Franey and her husband learned to handle Anna’s behaviors: uncontrollable crying, food sensitivity, kicking, biting and scratching. They faced medical debt, endless doctor’s appointments and physical therapy. Franey describes frequent “panic-filled” days, compounded by feelings of guilt about her own stress.
“It wiped us out financially, physically. It put an enormous stress on our marriage.” Franey went into early menopause from the stress and dealt with depression. Her husband was hospitalized with heart problems that a doctor attributed to caregiver stress.
Now 25, Anna is living in a shared home in Fairhaven and attends a day program. Franey and Anna talk on the phone every day and she comes home every few weeks. Franey says it finally provides her with “some desperately needed respite.”
But the stress of the future continues to weigh on her, as a mother and caregiver. “I’m now at a point in my life where I know I’m not gonna be here forever,” she said. “And the fear of the unknown, the fear leaving her to the mercy of the world is indescribable.”
Do you have a caregiving story you’d like to share? We would love to hear from you as we continue reporting on this topic. Email equityandjustice@wgbh.org.
