Helen Boyle, who cared for her husband Tom during his seven-year battle with Alzheimer’s disease, found solace in the company of friends.
“If my car is in the driveway, just come in,” she told them, keeping her door open for visits that sustained her through the hardest times. Small gatherings over cups of tea and photo albums “kept me bolstered. They gave me purpose.”
The holiday season, while joyful for many, often brings stress, exhaustion, and isolation for caregivers. Experts and caregivers alike emphasize the importance of flexibility, simplifying traditions, and seeking help to navigate this challenging time.
The Growing Role of Caregivers
Nearly one in four Rhode Islanders are 60 or over, a population that’s projected to grow by 75% over the next 30 years.
As Rhode Island gets older, caregiving is becoming more complex and increasingly demanding. About one in 10 Rhode Islanders provided unpaid caregiving in 2023, according to the Family Caregiver Alliance.
The hours are long and the work is intense. The Family Caregiver Alliance estimates that Rhode Island’s unpaid caregivers contributed an estimated 113 million hours, valued at $2.1 billion. Yet, the job takes a far greater physical and emotional toll.
“The caregiving experience is a journey that’s not for the faint of heart,” Boyle said. “Watching your loved one decline is a difficult road.”
Caregivers perform tasks ranging from helping with daily activities to responding to emergencies, all while managing their own emotional well-being.
And it spans generations, with middle-aged adults often juggling care for aging parents and their own children — the so-called “sandwich generation.” Nationally, nearly half of adults in their 40s and 50s fit this definition, with about 15% supporting both an aging parent and a child.
Maria Cimini, director of the Rhode Island Office of Healthy Aging, recalls her own struggles caring for a mother-in-law with dementia. “The emotional energy of caregiving is a lot. That alone is challenging,” she said. Even as a professional, “it was still really hard for me to navigate.”
Challenges Caregivers Face
Isolation and Mental Health: ‘We call ourselves the A-Team.”
The Boyles’ journey began after Tom experienced early episodes of forgetfulness that were out of character. A neuropsych exam revealed he was in early stages of Alzheimer’s. Their first stop was to visit the Alzheimer’s Association website, where they joined a couples support group. These groups are often invaluable, offering emotional outlets and connections.
Through COVID and loss, Helen says that the group bonded over caregiving’s stresses and shared grief. They continue to meet monthly, keeping in touch regularly over group chats. “To this day we are all extremely close,” says Boyle. “We call ourselves the A-Team.”
Caregivers often grieve the gradual loss of their loved one as they knew them, so having an outlet to process these feelings is vital, says Caroline Johnson, a Cranston resident and retired hospital chaplain who is an ordained minister in the United Church of Christ. Whether it’s joining a support group, seeking therapy, or carving out time for personal exercise, prioritizing mental health is crucial. Avoiding isolation is key.
“A friend circle can be your best form of self-care,” said Johnson, who recommends therapy, spiritual or pastoral care. “Having someone to listen — whether a therapist, pastor, or friend — can make a huge difference,” she said.
Find a local therapist: Johnson says to start by searching https://www.psychologytoday.com/, which lists dozens of Rhode Island therapists who specialize in dementia, grief, and geriatric care.
Constant Change
Janet Bryant, whose husband Paul has Alzheimer’s, highlights the unpredictability of caregiving: “The hardest thing about being a caregiver is it constantly changes.”
When Paul was diagnosed, Janet persuaded him to stop driving. A retired forest ranger and avid hunter and fisher, she also gave away his guns. As the disease progressed, she learned how to repair things around the house. Over time, she turned her focus to adapting their activities to meet Paul’s evolving needs. Jigsaw puzzles transitions to 100-piece puzzles, then to 35-piece ones.
“As soon as you think you’ve got it down, there’s a change,” she says. “You have to be very flexible.”
Tips for Navigating the Holidays
Simplify Traditions
Johnson advises scaling back: “If decorating feels like too much, consider simpler alternatives like a festive candle or holiday music. Everything doesn’t have to be a Hallmark Christmas.” Smaller, low-stress gatherings can also reduce overstimulation for loved ones with dementia.
Adjust Expectations
“Focus on what’s good for your loved one, not being the ‘hostess with the mostest,’” Boyle adds. Creating joy in small moments can replace the pressure of achieving perfection.
Ask for Help
Erica Collins, activities coordinator at Hope Alzheimer’s Center in Cranston, says that men in particular struggle as caregivers to ask for help. “They don’t want to burden their family, or they want to shield their partner from friends and family.”
Collins says that during the holidays, less is more. Instead of going to all seven of the holiday parties and dinners, pick one or two. Avoid the ones that will be the most stimulating.
If there’s a party that you really want to go to, ask someone to come give you respite for a couple of hours. “It’s okay to ask for help,” Collins says.
In addition to adult day care programs, the state office of health aging offers to connect people to CareBreaks, a low-cost service for residents providing unpaid caregivers a short-term break from their daily responsibilities.
‘So many joys within this disease.’
In March, Tom Boyle passed away from Alzheimer’s at age 72. Reflecting on her journey as a caregiver, Helen prefers to think of the “beautiful moments” they shared; quiet times looking through photo albums a trip to Ireland less than two years after his diagnosis. “There are so many joys within this disease that became evident to me.”
She looks back and sees her experience as a caregiver as a privilege. “I say to caregivers, be good to yourself. Treat yourself to a cup of tea or a walk, because you have to be healthy to be a good caregiver.”
Supporting Immigrant Communities
Gloribi Pastor, program director at Edgewood Adult Day Healthcare, notes that language barriers often prevent immigrant families from accessing caregiving resources. “We need more education in Spanish about dementia and its early signs,” she says, emphasizing the importance of outreach to non-English-speaking populations.
Cimini estimates that 15% of Rhode Islanders over 65 speak a language other than English at home. Efforts are underway to expand multilingual resources and support services.
Temporary Caregiver Insurance (TCI): Rhode Island state law allows caregivers to take time off work while retaining a portion of their pay.
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