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Caregiver Forums Are Depressing – But They're Supposed to Be

Places such as Reddit's /r/caregivers allow people caring for sick or disabled loved ones to come together, vent, and grieve.
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(Photo: Fairfax Media, via Getty)

This article originally appeared on VICE US

In 1999, a couple of days after Shawn Williams met the woman he'd eventually marry, she went in the hospital for knee surgery. Two months later, after the cast was taken off her leg, doctors informed her that she had multiple sclerosis. By 2005, his wife was forced to leave work—something as mild as turning her head would lead to uncontrollable vomiting. For a while she could still get around with a cane or crutches, but by 2009, she was bedridden.

Annons

Williams installed a downstairs bathroom to their two-story home and converted the living room into his wife's hospital quarters. Williams made the transition into a full-time caregiver. Last summer his wife fell out of her hoyer lift (a device used to move immobile people in and out of bed), and he was forced to check into a full-time nursing facility.

A couple of years ago Williams started the r/caregivers subreddit. It's a place where he and fellow caregivers can talk about the stresses, questions, and sadnesses that come with supporting an incapacitated loved one. The community is small but dedicated, and it provides an empathy that the rest of the world can't muster.

"It was slow going at first, and it's still slow going," Williams told me. "I follow the MS subreddit and told them about it, which brought in a circle of people. It's nice to just throw stuff out there, even if people didn't have any advice for me and were just lending a shoulder."

R/caregivers is one of many communities on the internet focused on fostering empathy between people who look after loved ones. While a lot of the conversation on these sites is focused on granular, mechanical advice—like, for instance, "do medical alert bracelets work?"—these are also spaces to be sad.

"I can't stress enough how important it is to have support whether online or in real-life," said a caregiver who prefers to remain anonymous, who regularly posts on the Facebook group Dementia Caregivers Support and reads r/caregivers. "People in real life don't really want to know what's going on. They don't want to hear anything other than, 'Life is great! My loved one is so sweet and I love being able to care for them! What a blessing!' The minute you voice the truth, people get uncomfortable."

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"In the group I'm in on Facebook," the caregiver added, "I can talk about how my loved one just hit and screamed at me, and people will talk me off the ledge. I can ask about how to remove the smell of pee from a carpet. I can ask a question about Medicare or etiquette when hiring a live-in. Other people who actually understand what I'm going through are a godsend."

Williams told me that his wife doesn't know about the caregiving subreddit, which allows him to be as honest as he needs to be. "Venting is important," he said. "There's so much frustration, you want to be mad at the disease, but you can't help but take it out on the person. If you can it's good to bide your time until you're in front of a keyboard so you can do your screaming there."

"Caregiver here. I've cared for my mother for about seven years. No family. No friends. No job. (Not for lack of trying) I've run out of ways to stay positive I believe," user pookie74 wrote in an r/caregiving post titled "Depression." "The stress is overwhelming and my health is deteriorating. I realize how hopeless this sounds (and actually may be) but, as a sole care provider, having stopped my own life years ago, what can I do?"

Around 43 million Americans care for an aging loved one, said Andy Cohen, head of the caregiving support site caring.com, adding that the grief that comes with that task tends to stay private.

"One of the things that came up in our research is that while people are looking for objective information, they're also looking for emotional support," Cohen said. "If you're planning a wedding or having a baby you obviously want to talk to your friends about it, but if your parents are dying you're not inclined to do the same thing because it's very sad. We set up our forums to use aliases so people can be open with their feelings in a supportive group. One of our customers called it her 'sacred garden.'"

Some of that honesty can be brutal. Cohen says that some people come to his forums and talk about hating their parents—something they would likely only say anonymously.

In a few years, Williams hopes to buy a house with the necessary equipment that would allow him to bring his wife home and return to caring for her full-time. It won't be the final hurdle, but they've learned to roll with the punches and stay optimistic.

"Not to be cliche, but she's my soulmate," Williams told me. "[My wife] gets me on a level that nobody else does. She's someone I can trust. She understands all my crazy ideas, my dreams, my sense of humor."

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