"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
Why Siblings Are The Forgotten Caregivers
When Katie MacDonald bought a new home in Brantford, Ont., this past spring, one of her main concerns was finding a house that was suitable for her older brother, Neil. ... In 2018, Katie started having intentional conversations with her parents about what Neil’s life...
How to Deal with Irrational Elderly Parents
Some of the approaches for responding to regular aging parents apply to irrational ones too, while other approaches are completely different. ... Understanding yourself and your parent doesn’t solve anything on its own. But, doing so gives you insight into where the...
Frontotemporal dementia: ‘I don’t ever want to be looked at by John as a caregiver, I want him to see me as his partner’
Cindy McCaffery provides support to her husband John who was diagnosed with frontotemporal dementia more than a decade ago, at age 48. Over the years, she has come to understand the importance of active living, and its apparent role in slowing down brain disease...
It’s time to embrace community care & let go of individualistic self-care
Everyone loves self-care these days… including billionaires, wealthy celebrities, corporations, your workplace or academic institutions, pop culture, and every social media influencer & wellness “guru”. The flourishing multi-billion dollar wellness, self-help...
Dinner with Proust: how Alzheimer’s caregivers are pulled into their patients’ worlds
In her mid-70s, Ida began showing signs of Alzheimer’s. Her decline was gradual. She experienced the usual memory loss and attendant confusion, but life went on pretty much as before. Then one day, Henry came home to find Ida speaking to a framed photograph on the...
Disability needs a new story
Disability typically is understood as the problem of a selected group of individuals who meet a defined set of conditions. This primary focus on the “people with the problem” has resulted in a narrow framework for understanding disability and for developing...
What I’ve learned being reliant on a caregiver
My family and I worked hard to find a set of four private pay caregivers to supplement the care they already provide for me. But with any employer-employee situation, things can happen accidentally or at the last minute that throw a wrench in an employee's work day....
The Ultimate Guide to Purée
We ate a mostly pureed diet for almost two years. Yes, I said we, because I ate what Grandma ate. I never wanted her to feel different. Also, it was easier. Pureeing it all saves time. Otherwise, I had an added task of separating my meal from hers… and if there were...
How to Set Boundaries with a Narcissistic Parent
Adult children of narcissists often find independence by separating out and spending limited time with their parents. But, as parents start to age and need support, the equation changes. Suddenly you may be expected to support them and may find yourself in the midst...
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.
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This is a space for everyone who provides care, no matter who you are or where you are in your caregiving journey