“Caregiving” vs “parenting”: do the words matter?
I’m starting to think that they do…
How is “caregiver“ defined? How should it be defined?
These questions continue to kick around my head after last month’s incredible conversation with Dr. Allison Applebaum,
, and .You can watch the entire discussion HERE and read Pooja’s beautiful take on the topic:
I teed up that conversation with this earlier piece, pointing out that:
“In the context of the maternal stress map, it seems like caregiving as a stressor could be a simple overlay. Every mother is exposed to this stressor if every mother is a caregiver. After all, it seems like the term “caregiver” has recently become interchangeable with the word “parent” across different media.
But, is it actually the same?”
Honestly, my initial thought after the conversation with Allison, Sehreen, and Pooja went something like this:“did the parenting space borrow the word “caregiver”?”
As a term, “caregiver” has been used for decades – in research, in healthcare – to identify those specifically providing care for individuals with chronic illness, medical needs, and needs related to aging. I had not seen the word “caregiver” used in the context of parenting (as in “... parents and caregivers…”) until very recently1.
The National Institutes of Health, in a style guide for destigmatizing language, defines the term this way: “a caregiver provides care for someone who cannot care for themselves.”
I’m not wiping butts in my house anymore. My kids could (theoretically) feed themselves if they needed to. They could probably pull off a Kevin McAllister2 if I accidentally left them behind and went to France for Christmas. I’m incredibly fortunate in that I do not have to schedule extra medical appointments for them and they do not require special accommodations at school. Pretty standard kid-related challenges around my house these days.
So, am I a caregiver? Or just a regular ‘ol parent?
I might still be a little bit of both, but, at this stage of life, my ratio is heavily skewed towards the parent side of the equation. Even Kevin needed a parent in the end (well, really, he needed his mom. That’s a whole other thing…)
Ok, I know the use of the term caregiver in the context of parenting is not about me.
And, in many ways, using expansive language to capture every potential person providing any amount of care for another human allows for incredible visibility and a broader call for improved care infrastructure. A recent report noted how the number of caregivers in the United States has nearly doubled (from 53 million caregivers to over 105 million). Here is where I’m stuck – is this number jump related to more parents self-identifying as caregivers? Does it matter?
What does this have to do with stress?
In conversation with Sehreen and Allison, it is clear that conflation of the terms is stressful in and of itself:
“I think the thing about “parenting” versus “caregiving” is that, frankly, [the conflation] is very triggering for me.” – Sehreen
and
“My own experience is one of incredible invisibility. I've attended too many lectures and seminars and events that were branded as caregiving, but eventually were conversations explicitly about parenting. From an emotional perspective, that invisibility is a risk. For the 53+ million family caregivers of individuals with chronic or life limiting illnesses, there's enough invisibility. We don't want to increase that.” – Allison
From these conversations, it’s also clear that the stress related to caregiving is just different from the stress related to parenting and that difference is important to recognize.
The stress related to raising a child in modern America is REAL, but parenting stress is different from caregiving stress. And types of caregiving stress are different too.
The stress related to caring for an infant is different from the stress related to caring for a teenager going through a mental health crisis.
The stress related to caring for a toddler is different from the stress related to caring for an elementary school-aged child with a chronic illness.
The stress related to the unexpected care journey after taking home a newborn is different from the stress related to the unexpected care journey after an aging parent receives a diagnosis of a life-limiting illness or disabling condition.
Care and the care journeys are so different. And so is the stress.
Based on the conversation, when it comes to those raising children, I feel like we should be thinking about caregiving stress as a layer on top of parenting stress. A layer that grows and shrinks, and is related and unrelated to children. It can also become a layered layer when the role relates to care for multiple people, like so many sandwich generation folks are squeezed by3.
If we flatten the layers by making parenting = caregiving, we lose the nuance of the distinct experiences related to caregiving. And we may be adding stress for those with a greater caregiving load by making them feel more invisible4, more stigmatized, and less supported.
And we have to think about the nuance on the flip side — joy and love:
I’m not sure where this leaves me on terminology. I’m still so torn. But listening to Allison and Sehreen’s stories and views is always so moving and having Pooja add the perfect observations and insight from her own clinical practice has my wheels turning.
Please have a look and a listen and let me know if you have thoughts on where we should go from here.
A few takeaways and snippets from the conversation:
The term “caregiver”, as it relates to the health and stress of those providing care, has been used in research for decades.
During that time, the term strictly related to family caregivers – referring to individuals caring for those with chronic or life limiting illnesses or disabilities. Even with this research dating to the 1980’s, providing clinical services to benefit the health of caregivers has only very recently become available.
“Back in 2010, I was so impressed by the support available for patients with cancer, but realized very quickly that there was little to no support available for family caregivers. Despite the fact that healthcare, more broadly, was really relying on families to shoulder tremendous patient care responsibilities. The scientific literature already showed that the distress and burden experienced by family caregivers was profound. And at that time, there were no psychosocial care programs for family caregivers.” – Allison
“Caregiving” as it relates to individuals providing care for those with chronic or life limiting illnesses or disabilities has several distinct characteristics that do not relate to parenting:
Extensive navigation of the healthcare system + healthcare advocacy
Orientation towards life-limited care or life-ending care
Parenting stress tracks towards growth promotion = what life I want you to lead?
Parent caregiver stress and family caregiver stress remains static = what life can I give you now?
Palliative caregiving stress tracks to end of life = how can I best help you leave this life?
“Parenting culture, particularly coastal parenting culture, is really saturated. It feels very oriented towards achievement. When you have a child with any sign of needs, it is literally the opposite of achievement culture, whether you want it or not.” – Sehreen
Existential and spiritual tones are different when care relates to dignity, quality of life, role reversals (esp child → parent)
Emotional tone of caregiving
Parenting emotional tone = child safety, health, happiness, future success, etc.
“There's such an important setting here, and that is the emotional, existential and spiritual setting in which the care is happening. And it is a much different emotional experience to be taking care of someone.Taking care of someone you know is going to die. Or someone whose physical capacity is not going to improve. That is a much different experience of care than caring as a parent for a [healthy] child.” – Allison
Invisibility and isolation relate to unique circumstances and challenges
Challenges unrelated to “milestones”, few to no common experiences
“I've stopped talking to my friends, and I only talk to her therapist. I have nothing left in the tank to socialize with anyone about, and even if I did socialize the conversations that were happening around me, were a little bit too much for me at that moment. As a parent caregiver, it is your child that has something chronic and ongoing that requires care and that requires you to stretch, psychologically, in ways that are very, very difficult.” – Sehreen
Caregiving = more unexpected, less choice, more destabilization.
A different feeling of uncertainty –
Caregiving = present-oriented
Parenting = future-oriented
“I lived that period of caregiving not being able to plan for anything and that was maddening. It prevented me from creating my life at the same time. And while yes, with parenting, there's there's limitations on plans, you are still able to be future oriented. In caregiving for the medically ill, you are forced to just be present oriented, and that's all you get.” – Allison
Different guilt + shame related to considering how much caregiving impacts or will impact life
“I noticed that my patients feel more free to talk about mom guilt and parenting guilt than they feel to free to talk about the guilt of, and the stress of, taking care of their own aging parents or their own parents that are dealing with health issues, or in-laws that are living with them that are dealing with health issues.” – Pooja
Both / AND / OR – Parenting + caregiving can co-exist. BUT we need to be able to separate the two experiences into layers.
When “parenting” and “caregiving” are separated, caregiving can be seen as an additional role, an additional layer of challenges and stress on top of parenting.
“What are the categories? Right? Because actually, there's just so much overlap. And it's almost like we would have one set of categories if we use words right. We had family caregiver, parent care, parenting, but if we classified by stress, it would give us other categories.” – Sehreen
Word conflation could create other issues:
How can we emphasize the need for clinical support for caregivers (like Allison’s work) if we flatten the layers?
How can we change visibility in the workplace for those without children or those caring for older children when “caregiving” only = having young children?
“Parents – including me, as I'm also a typical parent – are so under-resourced, we have so little infrastructure and we're just trying to grab on where we can. We are only now at the point where we can finally say that we are parents in the workplace. You definitely can't say you're a caregiver in the workplace. We are light years away from opening saying that. We need to be able to change everything around: we need to accept that care is a broader part of our values as Americans, and be able to push forward in a way where you don't feel bad that you have to take care of yourself, or you have to take care of a kid, or you have to take care of someone else.” – Sehreen
This is not a word battle – this is about respecting, acknowledging, and supporting the HUMAN experience.
“This is a larger conversation about what it means to be human” – Pooja
Are there better words to use? Can we capture the fullness of the experience? The power of the experience? The life-changing nature of the experience?
Connect with meaning, purpose, strength, growth?
Highlight how badass caregivers are for the work they are doing?
“I focus on ‘how do I want to feel?’ I want my story to have space. I want someone else's story to have space. I want agency. I want to be seen as an ambitious woman who also prioritizes her family. I was never really seen in my power which I find deeply ironic, because I have become so much more powerful since giving being a caregiver. I would want whatever term to be there to be actually in the fullness of the experience. Dr. Kelly Fadin uses the term ‘Advanced Parenting’ and that term made me feel like a badass.” – Sehreen
Other potential words:
Carers – used in UK, New Zealand, Australia
Partners-in-care – emphasize dignity of those requiring additional care
Parent caregiver – duality of being a parent caring for a child with medical needs
Also – Advanced Parenting – coined by Dr. Kelly Fadin for parent caregivers
Ok, I’m just going to throw this one out there – Are we trying to redefine the wrong word?
We’re making parenting = caregiving when caregiving ≠ parenting so… do we need another word for parenting to include those who are raising children and encountering the common challenges of parenthood but do not identify as a “parent”?
If you had a chance to join the conversation or watch the recording, is there anything I missed that stood out for you?
Personally, I hadn’t seen it. Doesn’t mean it hasn’t been used in this context longer than that. Here’s an example of an article about a parenting expert that uses the word caregivers.
I've been told that the use of caregiver and carer is used exclusively in place of "parent" in the UK.
Allison told me that in Aus/NZ they use "carer" to refer to individuals fitting the definition of "caregiver" that she uses.
Kevin was EIGHT when he was left behind in Home Alone 1.
He was TEN when he wondered NYC alone in the sequel.
The exact ages of my children! (well, my younger just had a birthday so pretty damn close). I’m starting to second guess my kids’ ability to be self-sufficient and fight off burglars.
Check it out:
Even if the larger reported number of caregivers theoretically makes the issue more broadly visible, that doesn't mean that individuals feel more visible.