Caregiver support groups — finding people who understand

This article is for educational purposes only and does not constitute medical, legal, or financial advice. Every family situation is different, and you should consult with appropriate professionals about your specific circumstances.

You're sitting with a group of strangers, and someone is telling a story that sounds exactly like your life. They describe the guilt, the exhaustion, the anger they feel about a situation they didn't choose. They talk about missing their old life. They talk about resentment toward family members who aren't helping. And you realize that you're not alone. These people understand what you're going through in a way that almost no one else does.

Support groups are one of the most valuable resources available to caregivers, and yet many people avoid them for a long time before finally showing up. The reasons are understandable. You might be embarrassed about your feelings. You might think that going to a support group means you're admitting defeat. You might be too exhausted to add one more thing to your schedule. You might be worried that you'll fall apart in front of strangers. You might think that talking about it won't help anyway.

But something important happens in a room full of caregivers. The shame starts to lift. You realize that what you're feeling is normal. You realize that the anger you feel is shared. You realize that the guilt and the grief and the exhaustion are things that almost every caregiver experiences. And somehow, knowing that you're not the only one makes the burden feel slightly lighter.

Finding a Group

The first step is finding a group. There are many different types of caregiver support groups, and finding the right one matters. Some groups are specific to a type of caregiving. There are groups for people caring for parents with dementia, groups for people caring for spouses with cancer, groups for people caring for children with disabilities. These specific groups are valuable because people understand the unique challenges of your particular situation.

There are also general caregiver support groups where people are caring for different types of family members with different types of conditions. These groups are valuable because they're usually larger and more accessible. You might find one that meets near you at a specific time.

There are online support groups, which are great if you can't get out of the house, if you live in a rural area, if you can only participate at certain times. Online groups offer more flexibility, though they can also feel less personal than in-person groups.

There are support groups run by nonprofits and organizations. The Caregiver Action Network and the Family Caregiver Alliance are two large organizations that offer support groups. Your local Area Agency on Aging might have information about groups in your area. Some hospitals and senior centers host caregiver support groups.

Finding a group takes some effort. You might have to try a few before you find one that feels right. The first group you attend might not be the one. The timing might not be right. The people might not feel like your people. That's okay. You can try a different group.

Attending Your First Meeting

When you first attend, you don't have to say anything. Many groups have new people just listen for the first meeting or two. You can hear what other people are experiencing without having to share your own story. This can help you figure out if the group is right for you and also give you time to get comfortable.

You also don't have to stay in a group that doesn't feel right. If the facilitator is unhelpful, if the group is too negative, if the group is focusing on things that aren't relevant to you, you can try a different one. There are many options, and the right group for you is out there.

What makes a good support group? A good facilitator who keeps the group focused and doesn't allow it to become a place where people just vent endlessly without finding any hope or solutions. Good boundaries around sharing so that people who need to talk get time and people who just want to listen can participate quietly. A mix of people at different stages of caregiving so that newer caregivers can learn from people who've been doing this longer, and veteran caregivers can remember their own early struggles. A mix of people with different types of caregiving situations so that you hear different perspectives and different ways of coping. And most importantly, a sense of mutual understanding and non-judgment.

What Happens in a Good Support Group

What happens in a good support group? You hear stories that sound like yours. You realize that the feelings you thought were unique to you are shared by many people. You hear other people express the anger and guilt and grief that you're feeling, and you start to feel like maybe those feelings are okay. You might get practical advice from people who've navigated similar situations. You might learn about resources you didn't know existed. You might make friends with people who understand your life in a way that most people don't.

Most importantly, you get to be witnessed. Someone listens to your story and says, "That sounds really hard. I get it. You're doing a good job." This sounds simple, but it's rare in the normal world. Most people don't want to hear about the hard parts of caregiving. They want you to be brave and positive. In a support group, you get to be tired and angry and sad and scared, and people don't try to fix it or convince you to be positive. They just acknowledge that it's hard and you're doing it anyway.

There's also the permission that comes from a support group. Other caregivers talk about taking breaks, about hiring help, about setting boundaries, about needing rest. You hear these things from people who are actually caregiving, not from people who are just giving advice from the outside. When you hear another caregiver say, "I hired someone to help with housecleaning so I could have one day a week where I don't have to think about caring for my parent," it gives you permission to do the same.

You also get accountability and reality checking. If you're thinking about doing something that's not sustainable, other caregivers will gently point that out. If you're blaming yourself for something that's not your fault, people in the group will help you see it differently. If you're thinking about making a big decision, you can talk it through with people who understand the context.

Making It Part of Your Life

Some people find that attending a support group regularly is what keeps them sane. It's the one hour a week where they're not the only caregiver in the room. It's where they don't have to explain what they're going through because everyone already knows. It's where they can be honest about their feelings without worrying about judgment.

Others find that they only need to attend occasionally, or that they attend a few times and then don't go back. That's okay too. Support groups aren't for everyone, and they don't have to be. But they're worth trying.

Finding a support group might feel like adding one more thing to your already overwhelming schedule. But it might also be the thing that saves you. It might be the thing that reminds you that you're not alone, that other people have survived what you're going through, that there are ways forward that you haven't thought of yet. It might be the thing that gives you permission to take care of yourself and set boundaries and admit that this is too hard to do alone.

Many people say that their support group became their lifeline. They don't know what they would have done without it. You don't know that until you try. And you deserve to have people in your life who understand what you're going through.

How To Help Your Elders is an educational resource. We do not provide medical, legal, or financial advice. The information in this article is general in nature and may not apply to your specific situation.