caregivers aren't supposed to go to dance parties, right?

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.

Written by Cori Carl
As Director, Cori is an active member of the community and regularly creates resources for people providing care.

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12 Comments

  1. No two people are going to have identical experience or challenges. I know people in my home area who are struggling with bigger issues than I face. I also know people who assure me their load is lighter than mine. All kinds and all manner of situations. But the take away here is take time to recharge yourself so you won’t be getting too sick yourself to do what is needed.

    Reply
  2. you are not a caregiver. I can tell by this bull()$article. It takes more than a fancy degree to know about being a caregiver. Your article is not only offensive. It is downright demoralizing, demeaning, disheartening and unrealistic. You have no idea do you? To be thrust into a world where there is no daylight at the end of the tunnel because the tunnel never ends. For many of us, our situation will not change until we, or the person we care for, dies. I’ll never dance again. But it’s not all about me is it? I never said it was. I come here for hope. It is my only social activity. I know it’s all my fault. I could just…go, have fun right? Wow. Seriously?

    Reply
    • Why would you say this to someone? Not everyone who is ill or disabled requires 24/7 care in a home or hospital setting. The world is full of people who are disabled or ill who are out there doing amazing things, while still requiring support from a caregiver. Many of us have family, friends, and professional caregivers who share the care. I’m sorry you’re in a place where you aren’t able to have empathy for people in situations different than your own. This is a supportive community for all caregivers.

      Reply
  3. I’m a caregiver for 13. I went to the car show today with my parents, gardened, and sat in the yard chatting with a close friend today! Back to work tomorrow, grateful!

    Reply
  4. Fantastic post! There is no single caregiving experience that we must all relate to. Caregiving needs vary greatly from person to person. It can even change over time for an individual. I am a very busy caregiver but I know that there are many who are much busier than I. Over time, caregiving has become easier for me as I figure things out and gain experience.

    It would be ridiculous for me to expect this site represent only those who have the exact same experience as me.

    Thanks for calling this out.

    Reply
  5. My mother does not require full-time care, but doesn’t like me being gone for more than 3 hours at one time. So in a way, I do have more freedom than some caregivers, but I still occasionally feel trapped in. Vacations and full weekends away are not even being considered. We tried a day trip last summer, and she fell. No serious injuries, and all my local back-up people were there, but I still felt so guilty. I just remind myself of all she did for me as a child, so it’s my turn to care for her.

    Reply
  6. thank you for that article. I’ve been afraid to say anything about my situation because I feel guilty hiring an aide for 4 hours a day and all day on thursdays to run errands, help another family member, go to church, eat out with a friend etc. I’m with my person the other 19 hours a day and all day on Saturdays. And I don’t resent being a caretaker. I receive as much from my husband as he receives from me. He is a 100% service-connected disabled veteran from the Vietnam War. His problems began two years after we were married in 1991. Now, 7 strokes, multiple tia’s, 3 silent heart attacks, two bouts of congestion heart failure, arterial peripheral disease and countless arterial bypass surgeries and now a toe that is self-amputating, and more – he is total care except for eating and he needs some help with that. I have limited family help, but I am the most able to care for him – and I have medical issues of my own including being on a walker for balance and knee issues. Not complaining, not bragging, Just the facts ma’am. But I’d like to hear more from the caretakers who like us have a life. We still need some encouragement and support to “keep up the good work.”

    Reply
  7. I smiled when I read this post. I’m still smiling because I am a caregiver and an activist who blogs and speaks about caregiving across ages and abilities. My broad conception of caregiving doesn’t always go down well with the disability sector when I talk about aging, for example, and older people don’t recognise themselves in the disability movement. I’m the Mom of a young man (26 years old) with severe disabilities, but I’m also daughter to my Mom who is 93. My father had 3 strokes. I know that caregiving can take many forms and the experience of other caregivers ALWAYS has something to teach me and something that reminds me of a moment in my own experience. We are made stronger by recognising our shared experience and we are weaker and more isolated when we refuse to share, talk and empathise. Together, we form a movement for greater understanding of giving and receiving care.

    Reply
  8. This post ROCKS! I can exhale now… I have all the responsiblity as my Mom’s Conservator and not enough time to spend with her. I have a full time job, after work commitments, me & my family recently became Guardians of my infant granddaughter (another story/post somewhere else!). I would visit 5 days a week to feed Mom dinner & socialize, now with the grandbaby it’s 3 days max. This doesn’t determine my love or level of caring and I am judged by this! Stay strong Caregivers, you are a special kind of person & you are loved back. Thanks again for this wonderful article…

    Reply
  9. Thank you, this article is exactly what I needed. I am not in a position to give up my whole life to care for my immobile mother who has several medical issues. I have a full time job and a family of my own. She lives with me, and I have a reliable in home caregiver for her. I do the hands in caregiving on mornings, evenings and weekends. I handle all of her finances and appointments. I have just returned from a trip to Florida, do zumba at least twice a week and enjoy time with my family. If I give all of that up, I will be sunk. It would not be a good situation at all for me, my mother or my family. Life is hard at times, but it is also meant to be enjoyed. Sending love and prayers to all caregivers!

    Reply
  10. GREAT POST! I’ve felt this way often and find it hard to find a caregiving group to ‘fit into’ because of our situation. I work, full time, and have fun and relax and am now finally enjoying life while also caring for my husband who is quadriplegic and cannot perform any activities of daily living. But I feel bad because I do enjoy life and relax and sleep even though we have a 7 year old daughter. Every caregiver journey is different. None is worse or better. They are all just different and we all need to be in this together. We all must remember to be kind to each other since we are all suffering in our own way. Thank you for this! and thank you for this site.

    Reply
  11. I spent time with my writer pal yesterday, who is the sole caregiver for her 90-year-old father and autistic brother. She’s a visual artist and professor as well, so taking time for her art is extremely important to her. “Otherwise,” she said, “if I don’t take time for me, all the rest of my responsibilities start to unravel as well. And I turn into a rebel who runs away!”

    Reply

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