"I'm not really a caregiver" stories
Everyone deserves care stories
Care work is real work stories
Care Work Longreads
Care is a social justice issue stories
Care is intersectional stories
Global chain of care work stories
All relationships are interdependent stories
Mutual aid, not charity stories
The latest care work stories
I am the only family member with whom Jay maintained contact for the last three decades. Over that time, we communicated exclusively through email and cards I sent to a post office box. ... The hospital discharged Jay with a bag hanging from his chest to drain bile...
After helping Occupy Wall Street activists buy debt for a few years, Antico and Ashton launched RIP Medical Debt in 2014. They started raising money from donors to buy up debt on secondary markets — where hospitals sell debt for pennies on the dollar to companies that...
She said she had something to tell me but that she was afraid. I reached for her trembling hand, telling her sweetly, naïvely, that it would be okay, whatever it was, that we would be okay. She said she’d had leukemia and had thought it was in remission, but it was...
Consent is extremely important and vital to all aspects of dating, relationships, sex and just about any kind of interpersonal interaction. Whether you want to cuddle, make out, or have or continue some kind of genital sex you will always need to seek and get...
The Caregiver Space Facebook account has received numerous violation notices, accusing us of lying about where we're operating from, spreading misinformation, encouraging violence and suicide, and making threats. This is, unfortunately, a fact of life when platforms...
While the press applauds the tech sector’s forward-thinking and sensitivity to the needs of underserved populations, the concerns of disabled people—voiced again and again and again—are disregarded. So much uncritical attention gets lavished on these seductive yet...
Scarleteen has a fantastic collection of articles on sex and disability. While I typically only share resources about care work or directed to the person whose role is primarily as the caregiver, there are so few quality resources discussing this topic that it feels...
New relationships - whether romantic, sexual, or both - are almost always exciting, no matter who you are. But for people with disabilities in relationships with neurotypical, nondisabled partners, new relationships can be filled with anxiety, including anxiety about...
Who cares? When picturing a caregiver, the person who comes to mind is almost invariably female. She is young (or young-ish). She looks healthy. She is usually in a uniform, the kind associated with nursing, to show that she is what she does. And she is never pictured...
Top Articles & Resources
Become a paid family caregiver in Canada
Become a paid family caregiver in the US
Caring for an abusive parent
When you’re at a breaking point
Dating as a family caregiver
Dealing with anger
Finding someone to talk to
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Common terms for caregiving
The actions: caretaking, care work, assisting, ADL support, direct care, care management, care coordination, care navigation
The person providing support: carer, care partner, aide, personal care assistant, home health aide (HHA), care coordinator, care navigator, case manager, care custodian, foster parent, foster caregiver, guardian, one-to-one, homemaker, live-in, care manager, nurse aide, care planner, private duty nurse, nanny to a disabled child, elder nanny, care companion, special needs parent, disability mom, disability dad, domestic helper, domestic, housekeeper, mother’s helper, family caregiver, paid caregiver, designated caregiver, partner in care
The people providing support: care team, web of care, care web, concierge, care train
The person receiving support: care recipient, caree, loved one (LO), ill spouse (IS), ward, dependent, elder, homebound, patient, client
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The thing is, everyone is talking about caregiving. They just don’t use the term “caregiving.” They talk about cancer, dementia, MS, cerebral palsy, and the frailty that sometimes accompanies aging.
They talk about being overwhelmed, stressed out, burnt out, and pulled in a dozen directions at once.
Stereotypes around who provides care leaves young people, queer people, men and masculine people, polyamorous and non-traditional families, and many others feeling like they don’t count as caregivers and don’t qualify for support. People who provide care during flares or as respite, who help a primary caregiver, who coordinate care from a distance, who manage the paperwork without providing hands-on care, are often overlooked. Their stories get lost, especially since they rarely use the term “caregiver.”
There are so many different terms used to describe caregiving and caregiving is itself an umbrella term to describe many different things. Many people who provide care don’t identify what they do with a specific label, outside of their role as a partner, friend, or other relationship. All of this can make it difficult to know who counts as a “real” caregiver.
Outside of discussing support provided by one person to another, caregiving is a term used to refer to very different things by the cannabis industry, the fetish community, and property maintenance. In psychology, “caregiver” and “caretaker” are used to label different relationship dynamics.
All of this makes it incredibly difficult to find resources that are relevant to your situation and to connect with people who’ve experienced similar circumstances. That’s why this database exists.
We curate resources our community has found insightful, powerful, and helpful. These are categorized based on the situation they discuss, type of care provided, characteristics of author, and relationship between care provider and recipient. Stories are also tagged with terms, like the disease or condition, so you can easily locate articles that relate to your life.
If supporting someone else’s physical or mental health is a big part of your life,
we recognize you and we welcome you into our community.
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Thoughts on care work from Cori, our director, that hit your inbox each Monday morning (more-or-less).
This isn't a roundup of articles; this is what's on her mind after deep discussions with a wide array of care workers, participating in communities of mutual aid, reactions to mainstream and academic publications, and personal reflections—from the profound to the profane.
We go way beyond tips and tricks. We're imagining a different world, based on what care workers are already living.
There are no grand solutions, but there are countless little ways to make our lives better.
This is a space for everyone who provides care, no matter who you are or where you are in your caregiving journey