November is National Family Caregivers Month. It’s a time to recognize and appreciate the selfless work of people who are caring for older adults. Are you feeling recognized and appreciated? I hope so. But I bet, if you’re like me, what you really need to feel is support and connection—and not just one month out of the year. Caregiving can be lonely, stressful, and for most of us, uncharted territory. It would be so helpful if we could pool our collective knowledge and empathy to help each other along this journey.
Over 53 million Americans are care providers for an aging relative. That’s an average of 15 people per square mile of U.S. soil. You’d think it would be easy for us to connect. How do we not bump into each other every time we walk out the door? There are few likely reasons.
Family Caregiver Identity Crisis
A lot of family caregivers don’t use the term “family caregiver” to identify ourselves. Many of us see ourselves as family members—often adult children—who are just taking on tasks to help someone we love. The help we provide to our elderly parents comes with the package of being in a family.
If you had asked me a couple of years ago if I were a family caregiver, I probably would have said, “No, I’m a mom and a daughter and a writer,” even though those first two roles require me to provide care. The role of mom, I willingly signed up for. Helping my sisters care for my parents was something I assumed I’d do someday. But I didn’t really think about what that would entail.
My older sister lived closest to our parents, by about 2,500 miles. Her role as their family caregiver evolved gradually at first. She would help out with the occasional computer issue. Then she started having them over to dinner every Sunday. When our mom got sick, suddenly a few occasional tasks became many regular duties. And as Mom’s, then Dad’s health declined, my younger sister and I moved back east to pitch in. Still, I felt like I was just a daughter, doing daughter things. It wasn’t until I started working for a company in the professional caregiving space that I realized all three of us are family caregivers.
So the challenge is, how do we find a caregiver support group when we don’t even realize we’re caregivers in the first place?
No Time for Support
Caregiving can be a full time job. The Family Caregiver Alliance reports that primary family caregivers of people with dementia report spending an average of 9 hours a day providing care. A study by The American Heart Association found that caregivers report spending an average of 13.5 hours a day caring for a loved one who has had a stroke during the first month home from the hospital. Six month’s in, that number jumps to 16.4 hours. That’s full time plus over time.
But wait, there’s more. AARP reports that 61% of family caregivers have a job outside of caregiving (raising my hand as a working daughter). And one quarter of all adults who are caring for at least one aging parent are also caring for at least one child under 18, according to a study conducted by the University of Michigan Department of Psychiatry (I have 2 under 18 at home).
When, exactly, are we supposed to find time to connect, then hang out and talk (or just kvetch) with other family caregivers?
Is it Even Okay to Talk about This?
Some of us were raised by parents who felt that family matters were family matters. They weren’t meant to be discussed with outsiders. So drumming up a conversation with others about, say, Mom’s brain injury or Dad’s cognitive impairment can make us feel like we’re betraying our parents’ confidence.
We can also feel like we have no right to complain about caring for our parents. They cared for us (though let’s be real: they must have complained about it sometimes), so it’s only fair that we care for them. And we convince ourselves that our troubles as caregivers pale in comparison to theirs as care recipients. We may be right about that. But our troubles can still be very troubling: our finances, careers, marriages, and mental health can all suffer.
Caregiving takes a very real toll on us. But these two mindsets can keep us from searching out the support and connection we need to manage that toll.
Benefits of Caregiver Support Groups
For family caregiver who are comfortable with talking about our experiences, there are a number of ways that connecting with others like us can help lighten our load.
Emotional Support
Support groups provide a safe place to express our emotions. They’re a judgment-free zone where we can let all the difficult thoughts and feelings out and expect to get a lot of head nods, shoulder pats, and 💯s. Knowing that we’re not the only one feeling these ways can bring validation and relief.
Jenna* became a family caregiver when she noticed that her dad’s dementia had progressed to the point where he was forgetting to take meds, losing the handset to his phone for days at a time, and missing important appointments. She also felt like she was constantly having to run interference on his mail and email to keep him from signing his life savings away to scam artists.
She joined a local support group for Alzheimer’s caregivers to see if she could find some solutions. “When I shared my story, one of the group members said, ‘Well, at least when the phone’s lost, you know he’s not vulnerable to phone scams.’ I didn’t realize until that moment how much I needed to…laugh. Not at my dad, but at my own situation. It had been so long since I laughed. And it really diffused things for me.”
Information Sharing and Advice
No one is born knowing how to care for an aging loved one. And many of us are thrown into the role in a moment of crisis—after a medical event or fall. There’s so much to learn. And there’s no one place that has all the answers. Often, we don’t even know what questions we need to ask. Support groups can be a source of information and advice as we navigate this new world.
My sisters and I have found that a lot of caregiving is problem-solving. And sometimes that means putting our heads together to come up with a new way of doing something or a schedule that works for everyone—it can feel like a game of Tetris at times. But having each other to bounce ideas off helps. Support groups can serve the same role. Hearing how other caregivers solve problems, or getting their input on our problems can help speed us to solutions.
Reducing Social Isolation
Anyone who's ever been a new parent knows how isolating that experience can be. Joyful, but isolating. We’re chained to the house for baby’s naps; all of our friends are at work; going out to dinner means paying for a babysitter and, if we breastfeed, pumping milk. It can be easier—albeit lonelier—just to stay home.
So what did we do? We found ourselves a new parent’s group, didn’t we? And we made friends with those other new parents. And some of them are still our friends, all these years later, aren’t they?
The experience is the same for new caregivers, but often with fewer joyful bits. All the more reason to get out or go online to find a caregivers’ support group that could form the bedrock of our new social life. These folks will forgive and empathize with us if a family emergency keeps us from a gathering. They’ll understand when we haven’t posted a message in a while due to work and family demands. And they’ll be there when we come up for air and are ready to connect again. They can also prove to be a great resource for us when we’re in need of respite care.
Types of Caregiver Support Groups
The good news is there’s a multitude of support groups that can fit the unique circumstances of just about all family caregivers. It may take a little bit of trial and error before we find the perfect fit. It helps to start by thinking about our limitations and preferences.
In-Person Caregiver Support Groups
Connecting in person gives us a great excuse to get out of the house and be social. I did a google search for “in-person caregiver support groups near me” and discovered my local health system hosts an in-person Family Caregiver Support Program once a month. And the library in my town hosts an Alzheimer’s Caregivers Support Group. You can check with your town hall or local houses of worship to see if they host any groups. And your local Area Agency on Aging can connect you to other local resources for family caregivers.
Online Caregiver Support Groups
Online communities are great for family caregivers who live in less densely populated areas, or who don’t have the time or ability to make it out to an in-person group. An organization called Duet hosts several online support groups, including one for those caring for family members with Alzheimer’s & Dementia, one for LGBTQ+ caregivers, a Parkinson’s group, and others.
A quick search on Facebook for “family caregivers support group” turns up an almost endless list of public and private groups we can join. The Caregiver Action Network Community is one, offering Facebook Lives, roundtables, Q&As, etc. And folks there may be able to direct you to a smaller private group that might work for you, as well. RubyWell also has a Family Caregiver Support Group on Facebook where family caregivers can come together to share caregiving experiences, get guidance, and find comfort in community.
Support Groups by Health Condition
Different illnesses and chronic conditions demand different skills and support from a family caregiver. And they place different kinds of stress on us, too. This is why I find narrowly focused caregiver support groups especially helpful. The experience and questions of someone caring for a parent with Alzheimer’s are very different from a caregiver whose parent is cognitively sharp but in treatment for cancer. The first may need help handling their parent’s moments of agitation and delusion. The second may be looking for ways to support their parent’s nutrition when they’re feeling too ill to eat.
Below are links to some caregiver support groups offered by reputable organizations that focus on common health conditions of older adults.
Alzheimer’s & Dementia caregiver support groups:
Alzheimer’s Foundation of America offers weekly support groups via phone.
Alzheimer’s Association offers virtual support groups and an online community message board.
Lewy Body Dementia Association offers virtual support groups by state or region. Also check out their Facebook group: Living Together With Lewy, or connect with LBDA Lewy Line at 800-539-9767 or support@lbda.org.
Memory People is a facebook group for people living with dementia and their family caregivers.
Parkinson's caregiver support groups:
American Parkinson’s Disease Association offers care partner support groups.
The Michael J Fox Foundation has an online platform called the Parkinson’s Buddy Network where loved ones, caregivers, and friends of people with Parkinson’s can connect with each other.
Cancer caregiver support groups:
CancerCare provides online support groups for cancer caregivers.
Memorial Sloan Kettering Cancer Center offers an online caregiver support group.
You can also do a google search for support groups by types of cancers.
Stroke caregiver support group:
There’s a Facebook group called Stroke Caregivers Support Group.
The Stroke Network offers chat rooms for stroke survivors and their caregivers.
How to Join a Caregiver Support Group
Once we've found a support group (or two, or more) that look right for us, we should spend some time on their message boards, attend some webinars or live phone calls, or stop by their meetings. It can feel a bit awkward talking at first, and that’s fine. We can also just soak up what others have to say. This will give us a feel for if the group is a good fit.
If our google searches don’t turn up any groups that work for us, we can ask our loved one’s physician or the discharge manager of the hospital or rehab facility if they know of any groups that they would recommend. We can also reach out to friends who are also caring for an aging loved one and start an informal support group of our own. Even if we just have one person we can talk to who is traveling a similar road, that connection will ease our feelings of isolation.
In addition to providing emotional support, information, and social connection, caregiver support groups can improve our overall quality of life. The brief respite from focusing on our loved one’s needs can bring a feeling of balance. Hearing about others’ experiences can give us a new perspective on our own. And prioritizing this time to take care of ourselves can restore a sense of control. My connections with other family caregivers have shown me I don't have to do this alone. I encourage others to reach out locally or online to find the connection you need.
Speaking of respite, don’t underestimate the importance of respite care. Taking time to shore up yourself can help you care for others and prevent your own overwhelm and exhaustion. Here are some resources that can help you plan and secure respite care:
ABCs of Respite - A Consumer Guide to Family Caregivers
AARP: How to Develop a Respite Plan
Alzheimer’s Association Caregiver Respite Guide
National Adult Day Services Association
U.S. Dept. of Veteran Affairs Respite Care Program
And if you're looking for more resources available to older adults and their family caregivers, check out our guide: Resources & Services for Family Caregivers
At RubyWell, we’re paving a path to financial stability for all family caregivers. Our Family Leave Finder provides state-by-sate info on family leave laws. Soon, family caregivers will be able to make the most of a loved one’s health insurance benefits with our Medicare Advantage Benefits Navigator. And ultimately, we're developing compensation solutions so that every family caregiver can be a paid caregiver. If you’d like to be among the first to hear about future products, join our waiting list.
*Name has been changed for privacy.
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