Caring for the Caregiver: Essential Self-Care Tips for Families of Adults with IDD 

Caring for a son, daughter, or sibling with an intellectual or developmental disability (IDD) doesn’t stop at 18. For many families, it stretches across decades. You manage medications and appointments, coordinate day programs and rides, and keep up with paperwork that never seems to shrink. And all the while, you’re getting older too. 

November is National Family Caregivers Month, an observance that began in 1994 to recognize the more than 53 million Americans caring for loved ones at home. Families of adults with IDD are a big part of that picture. More than 1 million Americans with IDD live with a caregiver over the age of 60, according to an analysis published by the Milbank Memorial Fund. 

Why Self-Care Matters for Long-Term Caregivers 

Parents of young children hear plenty about burnout. Parents of adults with IDD hear about it far less, even though many have been caregiving for 30 or 40 years. The fatigue builds slowly. Sleep gets shorter, your own doctor visits get pushed back, and friendships may fade. Taking care of yourself keeps you healthy enough to keep showing up, and it shows your loved one what balance looks like. 

“Families carry so much, for so long, that they forget they’re allowed to need support too,” says Charlotte Higham, VP of Adult Services at the Trudeau Center. “When a parent or caregiver takes a few hours for themselves, the whole family gets a chance to reset. And adults with IDD often enjoy that time to build their own routines, friendships, and independence.” 

Practical Self-Care Tips for Families of Adults with IDD 

• Treat program hours as real breaks. Time spent at a day or recreation program is your loved one’s time with peers. Let it be time for you too, whether that’s a nap, an errand, or coffee with a friend. 

• Keep your own appointments. Book the annual physical or appointment you’ve been putting off before the holiday calendar fills up. 

• Share the load. Write down who does what. Siblings, relatives, and neighbors often want to help but may not know how. One person covering a Saturday afternoon could make a big difference. 

• Find people who get it. A caregiver support group, online or in person, offers advice no pamphlet can. 

• Chase the daylight. Daylight saving time ended November 1, and New England sunsets now arrive before 4:30 p.m. A midday walk helps both mood and sleep. 

• Plan the holidays on your terms. Thanksgiving falls on November 26 this year. Keep gatherings smaller, hand out dishes to others, and build in quiet breaks for everyone, including you. 

Planning Ahead Is Self-Care, Too 

Many caregivers carry a quiet worry: who will support my loved one when I can’t? The question feels heavy, but a plan brings real peace of mind. That plan might include updated legal documents, a written guide to your loved one’s routines, preferences, and medical needs, and an early conversation about future living options. 

“Families tell us the hardest part is thinking about the future, and the biggest relief is having a plan,” says Silvia Borges, Director of Adult Services at Trudeau. “Exploring options like shared living or a group home early, before there’s a crisis, gives the person a real say in where and how they live. It also gives parents confidence that their son or daughter will be well cared for.” 

Trudeau Supports the Whole Family 

Since 1964, the Trudeau Center has supported people with IDD at every stage of life, and today serves more than 1,000 people each year across Rhode Island and nearby Massachusetts and Connecticut. For adults and their families, that includes the Adult Day Program, Adult Recreation, Employment Concepts, Community Support Services, Shared Living, and Group Living Residences. Our teams work side by side with families so caregiving feels less like a solo job. 

This National Family Caregivers Month, take one small step for yourself. You’ve earned it. To learn more about adult services and family support at the Trudeau Center, visit www.trudeaucenter.org. 

AI may have been used in the initial drafting and research of this article. The information provided is for educational purposes only and is not intended to be, nor should it be interpreted as, medical, therapeutic, legal, or individualized service advice. Every person’s needs and circumstances are unique. For information about services specific to you or your loved one, please contact the Trudeau Center.