“Caregiver” isn’t a simple identity to claim. It is much simpler to say that you are a person who loves someone with mental illness, or a disability, or a chronic condition. There is a disconnect between knowing that you’re taking on a lot of responsibility, or that your worries are weighing you down, and the fact that you need help yourself when you’re the one supposed to be doing the helping! You can wind up feeling that your own situation is nothing compared to what your loved one is dealing with, or what others do, so asking for help would be needy at best, and embarrassing at worst.

Of course, limited resources mean that interventions must seek to make an impact among people who need it most; however, I think that too often we focus on defining caregiving by the amount of care tasks performed, as though there is a quantity of “giving” required in order to qualify as a caregiver.

Sometimes it’s said that caregiving exists on a spectrum from caring about someone to caring for them. But it isn’t simple to draw a line where caring about a loved one turns into caring for them.

What makes us define something as “care”?

I would suggest that caregiving is in the eyes of the caregiver, but it’s especially hard for caregivers to see it for themselves. I often hear caregivers giving the disclaimer that they’re not really a caregiver because they don’t do that much, that often, or they don’t live with the person. They often then proceed to describe experiencing stress daily and worrying about their loved one. Caregivers are prone to not register the emotional labour or tasks they take on to support a loved one because those have become an integral part of their routine. It is complicated, in any case, to decide what activities count as part of caregiving, and which are “normal” and expected.

There’s an implication that caregiving is somehow above and beyond what would be “normal.” Different cultures, relationships, personalities, and situations affect what we are expected to do for the people we care about and how we feel about it.

Against diagnosing “caregivers” 

Caregivers can’t simply wrestle with how they feel about the care they provide — they have to contend with how the person they care for will be perceived, because expressing weakness or being dependent on someone else is not acceptable in our society. Caregivers can feel like disclosing their caregiving burden is blaming their loved one, or sharing the loved one’s struggles without their consent.

Just like it can be empowering to receive a diagnosis, and gain words for a feeling or a struggle, gaining the vocabulary of “caregiver,” “compassion fatigue,” and “caregiver burnout” can be affirming. But just like diagnoses, it can come with stigma. That’s why some people prefer to call themselves a “carer” – it feels less one-sided than “care-giving.” But any label is going to chafe if we’re not ready to be open about how a loved one’s condition impacts us.

We may feel ashamed or embarrassed that we are required to provide care. In the case of children who provide care, they can fear being separated from their family as a consequence of disclosing their caregiving. It is easy to say for kids, “regardless of how often or how much they’re doing, if they are impacted by a loved one’s illness or disability, we need to support them!” We should take the same approach to ourselves as adults. Receiving support as a caregiver should be as simple as seeking help if you feel you could use it.

Being there for someone you love

The fact that caregiving doesn’t stop when the person you care for isn’t in the room with you should really shape how we define being a caregiver. It doesn’t stop when that paperwork is finally filed, when a prescription is given, when the fridge is full, or when you have another responsibility. Any caregiver can tell you that much of being a caregiver is in the waiting, anticipating, and being on call for hands-on care, which indicates that maybe caring about isn’t so far from caring for.

I’m reminded of author bell hooks’ assertion that love is an action, never simply a feeling. She says that giving care is an essential dimension of love. So when we care about a loved one we must necessarily be caring for them to some extent. If you have a loved one experiencing duress, that is reason enough to seek support.

–Oliver Fitzpatrick
Young Carers Project Coordinator at AMI
From Share&Care Spring 2023