I hear every day how caregivers don’t go to the grocery store. They’re too busy at home. Caregivers don’t have time for work or school or themselves. They don’t have any friends because their friends and their family abandoned them when things got rough.
That doesn’t reflect my caregiving experience at all.
Liz and I read virtually every comment that gets posted to the site. Every day there’s at least one email about how someone’s post sharing their own personal caregiving experience isn’t realistic. Or a complaint that a post about one condition isn’t applicable to another condition. My personal favorite was when I got several complaints about Jonah’s list of things that make him happy, because those things don’t make them happy. And then I got a bunch of angry emails about how people didn’t like the list submitted by one of the people who had originally complained, either.
I never expected to have to say this to a group of people categorized by their selflessness, but it’s not always about you.
Today I went to work. Then I got a haircut. Then I went to a dance party with my friends. The things I did today are things caregivers supposedly don’t have time to do.
As I was looking around the dance floor tonight, I knew many of those people have served or are serving as caregivers. Some of them have probably been carees at some point. Maybe they’re currently managing a major medical condition or disability. A sizeable percentage of people were over 60, so it’s safe to guess they’ve cared for relatives and friends over the years.
And here they were, dancing.
This site is for them, just as much as it is for someone who’s a socially isolated full-time caregiver.
People who have supportive communities and utilize resources offline to maintain their life outside of caregiving are caregivers, too.
A guy I met through the Burning Man community had a child born prematurely with serious health complications. He quit his job so he could stay home with her for the first two years of her life. I got updates on her surgeries and treatments most weeks when we saw each other at the CSA pickup. I see him around the neighborhood and at dance parties. The last time I saw him was at an event I’d helped to organize. He was there with his wife and kids. He still organizes parties.
When Kayla shared tips on how to fundraise for medical expenses, I got a bunch of angry emails and comments about how caregivers don’t have time for that. Well, tell that to Phyllis. She found time and support to organize a record breaking fundraiser. I’ve been to so many fundraisers organized by the family and friends of people who have been hit by cars, diagnosed with terminal illnesses, beaten in hate crimes, and even attacked by a shark.
The people you see in restaurants, at bars, in the park, at the gym, on vacations are not some mysterious type of person who is immune to illness. They have friends who are desperately ill, have been injured in accidents, been born disabled, and faced mortality. So many people are coping with invisible illnesses or just keep private about their personal struggles. It’s never safe to assume someone else isn’t serving as a caregiver in some capacity. In fact, even the people who say they’re not caregivers are often providing support that qualifies as caregiving!
I have more than one friend who manages a steady stream of phone calls from a disabled relative. Every hour or so they excuse themselves to take a quick phone call to check in. They may come out with us less often, but it means that much more knowing that they feel spending time with us is worth organizing extra help. Sometimes one of us will stay home with their loved one so they can get out. Sometimes we create plans that their loved one can join us for, or we come to them. Sometimes we all chip in a few dollars to cover the cost of an aid. Because that’s what friends do.
Yes, many people give up careers and close their businesses when they become caregivers. But many others find caregiving propels them to be more dedicated employees and start new companies. You don’t have to look very hard to find startups created by caregivers, like Gabe, John, Sean, Seth, and Billy. Look at how many caregivers are professional authors, like our own Rick and Harriet. Honestly, I can’t think of a book written about caregiving that wasn’t written by a caregiver. Most of the home care service companies were created by people who had a difficult time finding reliable home care aids and knew there had to be a better way. I don’t believe the emails I get insisting caregivers can’t work or organize things.
Caregiving changes the way we look at the world. People ask me all the time if they can still join if their loved one has passed away and every time I say of course. People who are not currently serving as caregivers are welcome here. They’re no longer juggling the time needed to provide care, but they’re still an important part of this community. A very important part of this community, since they’re often the ones volunteering to moderate the forums and support groups and taking time to share what they’ve learned by writing articles.
Who belongs at The Caregiver Space?
Anyone who has ever…
- fed a friend’s cats while they were in the hospital, stayed with them for the first few nights after they got home, and supported them for months afterward
- called their mom every day, helped with arranging doctors visits, and tried to sort out piles of insurance paperwork
- spent hours on the internet researching symptoms, accompanied someone to doctors visits, and helped them around the house
- used their vacation to fly across the country to stay with their grandparents to help them with chores, home maintenance, and keep them company
- worked in a nursing home, long-term care facility, or as a home health aid
- taken endless phone calls and rearranged their schedule to support their best friend as they tried to figure out what was causing their health problems
- cleaned out pathways for your hoarder sister to maneuver around her home on crutches and come by every day for weeks to take care of her pets
- stayed home every holiday so they can bring their sister home from her residential facility
- checked in with a friend or family member to make sure they were complying with their psychiatric treatment
- decided not to move away from their parents to they can continue to help with a disabled family member
- filled out an FMLA form
…is welcome here.
We’re caring for family, friends, and clients. We’re providing care long-distance or occasionally or on-and-off or all the time. We’re helping one person or several. With over 100,000 members around the world, there are people on this site whose stories sound a lot like yours and people whose stories sound nothing like yours.
And the people in our community are far less than 1% of the people providing care around the world. There are so many different experiences to share.
The Caregiver Space is a safe space where we support each other. Nearly everyone serves as a caregiver over the course of their lifetime. The only people who don’t belong here are the ones who are unable to have empathy for people different than themselves.