If caregivers won’t support each other, who’ll support us?
hate spelled out in keyboard keys

It can be hard to have empathy for other people when you feel so drained, but it really breaks my heart to see caregivers tearing each other down.

On an article about raising funds for medical care: “I also agree having to beg for money is pathetic.”

On finding the bright side to a traumatic loss: “There is no bright side when you are in end of life caregiving.”

On an article by a caregiver with support from family and friends: “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?”

Why would you come to a support group to be mean to other people? I’m sorry if someone else’s personal experience doesn’t apply to your life. Just close the tab, click to the next article, move on. Why are people with such limited free time using that time to try to hurt someone else?

If you want to read the science behind why people are mean, Psychology Today has some possible explanations. Regardless, it doesn’t help caregivers come together as a community. It doesn’t help us help each other. It doesn’t help us get the support we need from the medical community, our friends and family, nonprofits, or the government. All it does it hurt people.

David summed it up:

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.

Caregivers have dramatically different experiences, but we still have a lot in common, which is why we get lumped together. So, how can we support each other?

We’re here to feel less alone. Let people know you can relate to what they’re saying without shouting over them.

If someone asks for advice, read their whole story. Offer advice for them, not you. Share your experience while respecting that we each live different lives.

We’re dealing with different things and coming from different places, but we have a lot in common. Respect that.

Not everyone is a full time caregiver. This is not a contest to see whose life is hardest, who’s the last appreciated, who’s the most bitter. If it is, I’ll gladly let you win.

It is not more noble to be a martyr. Perhaps quitting your job was the right choice for you. Perhaps residential care was the right choice for someone else. Perhaps someone can afford full time aids. Perhaps tough love was in order. Perhaps unconditional support was the best choice. Each situation is unique. We’re here to support and share, not to judge.

Sometimes you need to let it out. Do it in the forums or in the Facebook groups. Don’t attack another community member. And then move on. Negativity will poison this community. The point of venting is to let it out, not marinate in it.

Tiny Buddha has tips on how to be kind to people when you don’t feel like it and HuffPost suggests how being kind to others is good for you.

The world is a tough place. When you’re taking care of someone that’s sick or disabled there’s hardly any support. We’re all hurting. We’re all in impossible situations. We’re all tired. But we’re here because we know that finding people on here will make our lives easier. Let’s get started.

Written by Allison Powell
I live off of food from Trader Joe's. I spend my life in a cubicle, a la Office Space. I'm kind of obsessed with the internet. Confession: I take care of people but don't identify as a caregiver.

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19 Comments

  1. Caregiving is a self denying , sacrificial task for many people within families and is to be applauded…For those who choose it as a career it is no less noble and is often under great duress that their tasks are performed…That there is animosity within all this maybe says more about how community has become , than how it should be…

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  2. Caregivers often dont have a choice…circumstances happen so that it is thrust upon them e.g accident , illness, aging ,mental health

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  3. Sometimes, you just need to vent, with someone who is or has been there. It’s either that, or you have a breakdown, and we all know, that we don’t have time for that! Lol

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  4. Another day same crap pass the whiskey.

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  5. I think caregivers have to support each other, because sometimes friends and sadly family just don’t support us. They don’t understand, and they say and do hurtful things. At least in our ‘disability world’ as I like to call it, we have people around us who are going through the same or similar situations. These are the people we need.

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  6. The article is right on–every caregiving situation is different. We all do the best we can with our given situation.

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  7. I annoy haters when they go – Well, your dad isn’t so bad off like the others. I respond, “Oh, yes, I know I’m lucky dad’s brain damage gave us a 2nd chance to enjoy each other’s company. I’m still his 24/7 356 days a year, caregiver. That is still the same, no days off, no one helping or understanding how he needs things, trying to make ‘one size fits all’ application.” I’ve been accused of wanting money, attention, just about anything when I’m researching for help to aid me in helping him. Mostly from men my father’s age, come to think of it, fellow veterans. It is frustrating.

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    • Yikes! And you haven’t smacked those folks in the back of their heads?! Lol

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  8. Caregiving isn’t some noble badge of courage. It’s very difficult and demanding to both your mental and physical self
    Different for everyone. So no one should be making judgements or self centered comments about others. If you are, then maybe you arent doing the best job you are capable of , in being a Caregiver ….Be nice

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  9. You can Never know what it’s like to be Caregiver, until You’ve actually Been a Caregiver. Bless us all ⚘

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  10. Thank you for sharing this article. What I do appreciate about the Caregiver Space is that the majority of people are supporting each other – whether just listening by reading or providing some very insightful information. Thanks to all of you this group is a good place with good spirits.

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  11. Great article! I agree, male, female, gay, straight, black, white, old or young. we are all giving love and care and need support, not to be torn down more then our current stress already does.

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  12. I totally agree as well, if we cant rely, learn, lean, etc on one another its over! I’ve learned so much from other caregivers! There are so many different experiences & challenges faced. What i don’t understand though either is when people compare who’s is the worst. I dont share to compare, i share because i pray what i’ve been through helps someone/others, i truly pray that even now as we share our experiences we help one another, please!

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  13. I totally agree with the fact that we as caregivers should support one another and not tear each other down in any way. But I’m sorry I can’t lie, it is kind of irritating when some people who aren’t caregivers interject BS when CLEARLY that have not been a caregiver a day in their lives.

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  14. Very true. Being and only child with literally no help. Outreached to numerous agencies. No dollars, no help…too many seniors in area needing help and very defiant parents, I outreached because I’m truly at breaking point. While some were nice, others posted that I should be grateful, or not selfish. Some very hurtful posts. I realize and understand, but tearing people down us why people are afraid to outreach. Made me think of actor Robin Williams. Not the same situation but was he afraid to outreach that he was at a breaking point because he was a comic expected to be on his game 24/7? Maybe if he did tragedy would not have happened . Seen a lot of tear downs on here and it makes things even worse.

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  15. I recently thought on times in my life where some little thing, like not getting picked for the team, was a 10/10 on the disaster scale. Or the moment when I spill the wet coffee grounds, for a split second it is a 10/10 upset. And so it is self defined upset as we have HUGE issues in caregiving.

    A typical starter happening that drags one into being a possible caregiver, even having to consider it, is when mom or dad…or your spouse’s parents…start to show memory loss…get disoriented driving AND cannot seem to balance checkbook AND forget the name of their doctor… AND YOU KNOW WHAT THAT MEANS!!? Means one might have to drop by every few weeks to see if they are okay, hoping they are cause if they aren’t…then…that means…well, making the decision we all had to make, chose to make…to become a hands on caregiver.

    Ah, well that was a 10/10 for me too…the tragedy of my life leaving the incredible life I had created for myself, literally sorting through boxes and packing on my front porch…in the middle of a raging sleetstorm… …listening to Schubert’s last piano sonata (B-flat) one on the thousand mile drive south…sobbing my eyes out. Little did I know about the huge issues I would face, the crimes, the sabotages, the backstabbings, the cruelties… 10- 10- 10- 10-…and these did not even involve Mom’s dementia and problems… And the 10 upset of whatever behavior…I would later give anything to return to. Her being able to say a sentence. any sentence… 13 years of caregiving…financial disaster, teeth rotted out.

    I guess it is easy to take pot shots… seeing someone share how awful it is that grandpa pooped in his pants while eating at a restaurant… We can all certainly top that in this disaster derby of caregiving… There will always be someone who “has it easy…you have NO idea”…and those who have it harder than we can ever imagine…

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  16. Thank you for writing this. Life is hard enough without people judging or attacking each other.

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  17. Hi, not a comment on the article, but one on how it is written. I find articles that have all different fonts and font sizes extremely difficult to read. I have never understood why people write that way and most times when I come across an article so written, I move on without reading it. I have Chronic Fatigue and Fibromyalgia and my eyes and brain do NOT do well having to constantly readjust how I see things. Just something you might like to consider when writing. Thanks.

    Reply

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