Support Groups for Caregivers: 5 Real Ones

Aaliyah thought she was alone at home on a Tuesday night. Then she opened Zoom and saw 23 other caregivers in 23 other homes.

Tuesday, 8:48 p.m. Aaliyah is curled up on the couch under a blanket with the laptop open. She has been Googling "caregiver support groups near me" for twelve minutes. The first three results are funeral homes and assisted living facilities pretending to host groups. The fourth is a real one: a Zoom call that meets Tuesdays at 8 p.m. Eastern. It started 48 minutes ago.

She does not click the link. She gets a glass of water. She walks back to the laptop. She tells herself she is too tired tonight, she is too late, she will go next week. She clicks the link anyway. The Zoom opens. There are 24 little squares on the screen, hers included. Twenty-two other women and one man. A facilitator named Denise is speaking. Aaliyah's camera is off.

Within four minutes, a woman named Rachel (Aaliyah guesses 50, in Ohio, in a similar hoodie) is talking about her father refusing to bathe. She is laughing while she says it. Aaliyah starts crying. She is not sad. She is recognized. She did not know other people kept this exact list of indignities in their heads.

I thought I was the only one keeping a list of indignities at midnight.

Why caregiver isolation is its own problem

The Family Caregiver Alliance, drawing on caregiver research, reports that 40 to 70 percent of family caregivers have clinically significant symptoms of depression. Isolation is part of what wears people down. The friend network that worked when your kids were small does not work for this. Your friends with healthy parents do not understand. Your friends whose parents have already died are grieving something different.

The structural problem is that caregiving doesn't have a workplace, a school pick-up line, or a soccer sideline where people who are doing the same thing run into each other. You do it in your mom's kitchen alone. The only people who get it are other people doing the same thing, and they are also alone in their own moms' kitchens.

Support groups solve this by collecting those alone-people into one room, usually a Zoom room these days, once a week. The room is the intervention. The room being good or bad matters less than the room existing on Tuesday at 8 p.m. when you would otherwise be eating cereal alone over the sink.

What works: five real groups worth showing up to

Family Caregiver Alliance runs a free national Caregiver Online Support Group by email, for families and partners caring for adults with Alzheimer's, stroke, brain injury, and other long-term conditions. Sign up with a short form at caregiver.org, then read and post on your own schedule, one message at a time or as a daily digest. The group is unmoderated, so it reads like a long kitchen-table conversation, not a class. If you live in the San Francisco Bay Area, FCA also runs scheduled Zoom groups for local caregivers. Best if you would rather write than talk.

AARP Caregiver Community is free and has three doors: the Caregiving Connect message boards in AARP's Online Community at community.aarp.org, the AARP Family Caregivers Discussion Group on Facebook, and live virtual caregiver support groups that meet by video each week. Start with the message boards if your schedule won't hold a fixed weekly time, or pick a video group if you want to hear real voices. Caregiver Action Network at caregiveraction.org runs free online support groups and a caregiver community on Facebook, and its Caregiver Help Desk at 855-227-3640 answers weekdays, 8 a.m. to 7 p.m. Eastern.

ALZConnected (alzconnected.org) is the Alzheimer's Association's free online community, with discussion boards just for caregivers. Read for a week before posting. If the person you care for has dementia and you would rather talk than type, the Association also runs caregiver support groups, virtual and in person, and its 24/7 Helpline is 800-272-3900. r/AgingParents on Reddit (reddit.com/r/AgingParents) is anonymous, text-based, brutally honest, and runs 24 hours a day. It is the best place for the 2 a.m. "I just snapped at my mom" post. Read the sidebar resources before posting.

What changes after the first three meetings

Aaliyah went back the next Tuesday. And the Tuesday after that. By the third meeting she had her camera on and was sharing: about the bathing thing, about the moment in the Costco parking lot, about how her brother in Denver has not visited in fourteen months. Denise the facilitator asked her if she had a therapist. Aaliyah said no. Two of the other women DM'd her therapist names in the chat afterward.

The group did not solve Aaliyah's caregiving problems. The group made the problems smaller because they were no longer secrets. The thing she would normally rehearse in her head at 11 p.m. became a thing she said out loud at 8 p.m., and the next 11 p.m. was a little quieter.

Her mom didn't lose anything in this trade. Mom still had her own routine, her own iPhone, her own kitchen. Mom has Tiina for the quiet hours when she wants to talk to someone. Aaliyah has Denise's Zoom for the hours when she does. Both of them have their own thing now. That is the real shift.

What you can do this Tuesday

Three steps. First: pick one of the five groups. If you don't know which, start with one of AARP's live virtual caregiver support groups: they meet by video every week, so there is a real first meeting to show up to. Sign up tonight, not next week. The signup is a form, not an interview.

Second: put the first meeting on your calendar in pen. Camera off if you want. Microphone off. You can lurk for the first one. Just be in the room.

Third: go to the second meeting. The first meeting tells you nothing because the first meeting is just survival. The second meeting tells you whether this is your group. If it isn't, try a different one. The pool is wide enough that one of the five will fit.

What this sounds like with Tiina in the room

Wednesday morning, the day after the second Zoom. Mom is in her kitchen in Ohio. She opens Tiina on her iPhone. "Aaliyah was tired on the phone last night," Mom says. Tiina says, "Did she say why?" Mom says, "She was on some kind of meeting. With other daughters whose mothers are like me." Tiina says, "How do you feel about that?" Mom thinks. "Relieved. I worry she has nobody to talk to." Tiina says, "Did you tell her you were relieved?" Mom says, "No. I should." Tiina says, "Do you want to call her now, or after lunch?" Mom says, "After lunch. I'll think about what I want to say."

She thinks about it. At 1:30 p.m. she calls Aaliyah and tells her, in her own words, that she is glad Aaliyah has somewhere to talk. Aaliyah cries again, this time at her desk.

9:51•••

A

Aaliyah

Tuesday night · 9:51 PM

First Zoom support group tonight. I cried in the first ten minutes.

Twenty-three strangers. All carrying the same brick. Nobody told me to look on the bright side.

Weekly from now on. Tuesday 8pm is mine.

Mom's fine. She spent the evening telling Tiina about her pot roast.

Tuesday night · 9:51 PM

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