‘Please know you’re not alone’: For dementia caregivers, a place to share with strangers — and be honest

Barbara Metcalf and Mary Smallwood live 826 miles apart. They’ve never met in person. If not for a chance interaction on Facebook (FB), they would have stayed strangers. But for months, the two women talked nearly every day, swapping stories and venting about their husbands, who both have dementia.

Their husbands’ symptoms have manifested in particularly difficult, deeply isolating ways. They blamed their wives for their conditions. They blamed their wives for losing their jobs. They blamed their wives because they couldn’t drive anymore. They accused them of having affairs with the mailman or stealing their money. They urinated all over their houses, leaving the women cleaning for hours.

“It was a constant battle of trying to keep him clean, keep him from having a UTI, keep his dignity, explain to him why it was all happening so he could understand it,” Metcalf said.

“We couldn’t take our eyes off of him,” Smallwood echoed. “The minute he got up to move, we’d be following him.”

Metcalf and Smallwood happened to join the same Facebook group for caregivers of people with dementia. They struck up a conversation in a private message and started talking more and more. It was an indescribable relief to finally connect with someone who understood what, exactly, it was like.

Because while both women loved their husbands, and understood acutely the devastating effects of dementia, it wasn’t pleasant to be a caregiver.

“It was living hell,” Metcalf said.

Facebook groups have given caregivers like Metcalf and Smallwood a place to go for a new kind of support they can’t find elsewhere. There is always someone online, and often, there’s someone who is familiar with the very same problems you’ve come there to ask about. You don’t have to drive to a support group or find someone to care for your loved one while you’re there. They’re a place to ask for advice, to vent, to be brutally honest. And because most groups are closed, they’re a place to share things with strangers that you’d never want your own family to know, things a caregiver might be embarrassed or ashamed to ask anyone but another caregiver.

“It’s a safe space for caregivers to go where they can ask anything,” said Ryan Williams, the marketing director of StudyKIK, a site that lets clinical trial companies list studies and potential participants search for trials. In his role at StudyKIK, Williams runs a handful of patient Facebook groups, including a group for dementia caregivers with more than 30,000 members.

The groups are a particularly powerful platform for dementia caregivers, who are tasked with a singularly cruel and lonely job. They shoulder hefty responsibilities like all kinds of caregivers do — coordinating medical care, helping with bathing and eating, and figuring out finances. But they do so while watching their loved ones — often, a parent or partner — lose their memories and their sense of self.

Metcalf saw the Facebook group as a safe place to post ahead of her husband’s appointment with a gerontology psychologist in July 2018. Her husband had Parkinson’s dementia and had recently lost his longtime job as a security guard. The costs of his medications, supplies, and care was quickly exhausting their savings. He was combative, paranoid, and prone to personality flips that Metcalf saw the worse side of.

That particular post was a plea for help — not just for Metcalf, but for anyone in a similar situation. One community member pointed her to a pastor for help filling out paperwork and to senior centers for help with cleaning and care. Others offered prayers, sympathy, or good luck wishes for the doctor’s visit. Smallwood, who had already formed a friendship with Metcalf, chimed in.

“You know I’ve got one too, Barb,” Smallwood commented on the post. “Please know you’re not alone <3 Go outside, yell as loud as you can, smile and put one foot in front of the other. You’ve got this.”

Mary Smallwood
Left, Mary Smallwood and her husband at their daughter’s 2016 wedding. Right, a recent photo of Mary Smallwood and her husband, who has vascular dementia. Smallwood was her husband’s primary caregiver for years before he moved into a memory care facility.COURTESY MARY SMALLWOOD

Smallwood knew what Metcalf was going through. Her husband, now 72, started experiencing the earliest symptoms of vascular dementia in 2008. He lost his job that year. For years, she was his full-time caregiver. She had an outside caregiver for two hours, three days a week, but that wasn’t enough time for her to do much more than drive to a doctor’s appointment and back.

Sometimes, he would get mad and wander into the 14-acre woods around their home at night. Smallwood had to put alarms on every door just so she could sleep without worrying at night. She was forced to quit the part-time job she’d picked up after retiring, doing a little bit of everything at a local brewpub.

“It feels like it’s the disease of the devil. At first, I thought the devil was out to get the patient. Now I see he is out to get the caregiver,” Smallwood said.

She was scared, angry, financially drained. She grew more active in the Facebook group, talking to Metcalf and a handful of other caregivers. To her, it was “priceless” to have someone understand what she was going through. The groups gave her a chance to air her feelings without the filters she might use when talking to another family member or a fiend.

Like any Facebook group, people fight. There is sometimes a back-and-forth about how forgiving or patient a caregiver needs to be. A common comment: Dementia is a disease, so you can’t be angry at the person who has it. It isn’t their fault. That’s true. But it’s also true that sometimes, caregivers are fed up and desperately need somewhere to share that.

“Bullshit, I’m sorry,” Smallwood said. “It’s OK. Let them vent. Let them be angry.”

Smallwood moved her husband into a facility eight months ago, just before their 50th wedding anniversary. And while she’s no longer a live-in caregiver, the experience is still exhausting and heartbreaking.

“I hate to go see him, and I hate to come home after seeing him,” she said.

And just as Smallwood understood Metcalf’s challenges, Metcalf understands all too well that specific feeling, that sadness mixed with loneliness and tinged with frustration. Their shared experience is what cemented her bond with Smallwood and others she has met online, who have filled a gap in Metcalf’s support system.

“It’s very comforting to know there are several women who have been in the same shoes that you are. We compare notes, we collaborate, we support each other,” Metcalf said. “You are totally worn out. You need that affirmation from someone else who has been there and has come out on the other side.”

Metcalf, whose husband still lives at home, spends a good chunk of her time responding to comments on the Facebook groups. She wants to help people, knowing how overwhelming everything can be as a caregiver. But Smallwood doesn’t check the groups as often now that her husband no longer lives at home. When she does, the posts feel strangely familiar and strike her as sad.

“Now I get on the site and I see the same questions that Barb and I were asking,” Smallwood said.