WHO CARES?
WHEN YOU'RE ONLY HUMAN, UP AGAINST THE SUPERHUMAN DEMANDS OF CARING
Caring is the most profoundly human thing any of us can do.
And yet it requires superhuman levels of resilience.
Being a carer is a relentless test of an individual’s commitment, endurance, tenacity, and grit.
But we’re not built to go it alone. And not all carers receive sufficient care themselves to avoid burning through their resilience resources.
Without regular opportunities to replenish finite resilience reserves, too many carers buckle under the strain.
It’s not that they lack resilience; it’s that resilience is a renewable resource. You can’t bust through it faster than you replenish it if you mean to stay well.
If the goal is to provide the best care possible for however long it takes, then the task is to balance your energy budget and ringfence some resilience resources in reserve.
THE MANY FACES OF CARE
Carers show up in a wide range of different contexts. But the strength, strain, and sacrifice are familiar to all.
CHRONIC ILLNESS CARE
Caring for a loved one with chronic illness is a marathon of uncertainty. The grind is long term, and there’s no finish line in sight. There are good days amidst the bad, but you’re always aware a bad day could be just around the corner. The carer is what holds things steady when life’s rhythm is so unpredictable for their loved one. So, it’s hard for the carer to relax into a rhythm of their own when life is punctuated by elevated and urgent demands.
TERMINAL ILLNESS CARE
If you’re caring for a loved one who’s terminally ill, you’re both a lifeline and a witness to their decline, walking the tightrope between hope and grief. As the end closes in, you give ever more to soothe the pain from which your loved one will not emerge. With time so short and bittersweet, self-care and emotional processing take backseat positions at best. The anticipatory grief can be crushing long before the loss itself arrives.
DEMENTIA AND AGED CARE
When you care for an aging loved one, your task is to manage their safety and dignity. And nowhere is this more apparent than when caring for a loved one with dementia. The push-and-pull of capacities lost and temporarily regained challenge any notion of linearity. But a thousand small goodbyes gradually erode the relationship as you continue to care for a loved one you are losing piece by piece.
MENTAL HEALTH AND PSYCHOLOGICAL INJURY CARE
Caring for a loved one with mental health challenges (e.g., depression, schizophrenia) or psychological injury (e.g., PTSD, moral injury) can be a whirlwind of uncertainty. You’re the one who has to hold steady when moods, crises, or trauma responses erupt. And balancing empathy and boundaries when supporting a loved one in psychological distress – particularly if they are emotionally volatile or extremely withdrawn – demands superhuman emotion regulation skills.
DISABILITY CARE
Supporting a loved one with a physical or intellectual disability means constant advocacy, invisible labour, and navigating complex systems that often seem designed to make things harder. Battling the behemoth of bureaucracy to secure even the most basic of supports is an exercise in demoralisation, especially when your loved one’s unchanging needs are regularly reassessed in service of tightening budgets. In the case of intellectual disability, the carer role is lifelong, and spans the spectrum of advocate, translator, protector, a bridge between two worlds. The love runs deep, but so does the exhaustion from navigating a world that infantilizes the loved one and overlooks their carer.
THE EROSION OF RESILIENCE
Most of us will play a caring role at some point. It’s a privilege to be in a position to. But showing up every day with your own life on the backburner demands tremendous endurance, empathy, and adaptability.
Caring carves deep grooves in a person’s psyche. Often stretched to their limits or beyond, carers face a range of threats to their resilience.
CHRONIC STRESS & BURNOUT
If your system can never switch off, hypervigilance, sleep deprivation, and emotional exhaustion become the baseline. The line between holding it together and running on empty blurs fast. And over time, caring can wear out the nervous system, rendering the carer vulnerable to the impacts of chronic stress and burnout. When the task seems thankless, burnout is often the reward.
TRAUMATIC STRESS
Watching suffering and witnessing decline can be brutal. Medical emergencies and end-of-life contexts can be quite traumatic for carers who witness their loved one’s pain and may feel powerless to help. It’s only posttraumatic stress when the event is over. In ongoing care contexts, the peritraumatic stress can mount with no relief in sight.
MORAL INJURY
When you can’t do enough to help because resources or systems fail the person you’re fighting for, moral injury is a real risk that no one warns carers about. You may face obstacles to care that feel like systemic betrayal. Or you may have to make impossible decisions – like, do we escalate treatment or let go? The moral wounds of should-haves, what-ifs, and if-onlys can leave deep scars on the souls of carers.
ISOLATION
The carer’s world shrinks as their caring role expands. Friends might fade into the background, social life might evaporate, and the carer identity swallows up all other roles – partner, professional, friend. As social support shrinks, isolation takes its toll in the form of lonely struggle.
IDENTITY LOSS
When caring becomes the main feature of your everyday life, it can be easy to lose sight of who you are outside that role. And when the role is central to your identity, being a good carer becomes the most important goal. And when so much hinges on being a good carer, guilt and shame are first on the scene of any mistake, and of any attempt to reclaim a sense of self beyond carer.
RESILIENCE: BUILD, REBUILD, RINSE, REPEAT
Resilience doesn’t mean stoicism.
As a renewable resource, resilience can be depleted, just as it can be replenished. Reserves can run dry without a recovery window.
You can’t pour from an empty cup, as they say. But no one just hands you the cup to begin with. Carers need to be ruthless in protecting their resources and building up their reserves if they are to sustain caring for the long haul.
Here’s how it’s done:
SETTING BOUNDARIES
Saying no to being over-extended isn’t selfish. It’s necessary for survival. You will not live to care another day if you don’t protect your resources and keep some in reserve. Maintaining boundaries enables you to live with a more consistent routine where you can prioritise systems and processes of self-care to see you through the hard yards. Sometimes boundaries need extra reinforcement in the form of delegating certain tasks to others so you can keep your carer role clearly defined.
MICRO-REST
When caring is a full-time job, or even a 24/7 job in some cases, we need to take our rest where we can get it. This means being purposeful. Even just taking ten minutes to yourself to be quiet, to practice mindful breathing, to sneak a bit of joy, can help to punctuate the work with rest. For me, going for walks, blasting music in the car, and journalling before bedtime all help reset my nervous system.
CONNECTING WITH PEERS
We often feel like others don’t properly understand what we’re going through. Connecting with other carers who get it can help. The shared language and validation of the lived experience community can serve as antidotes to isolation, allowing us to say the unsayable and know that we are understood. Joining online support groups via social media can help connect and validate us when it seems like no one around us gets it. Though truthfully many of us probably know someone who’s going through something similar irl. If we are brave and speak the truth of our circumstances, we may well find allies close by. In this, I am fortunate that my best friend is on a parallel path.
NAMING THE MORAL WEIGHT
There’s no two ways about it: caring is morally fraught. Talking about the challenges of frustration, helplessness, and guilt out loud can stop them from eating away at you. It may help to talk this through with a therapist before attempting to do so with friends and family. Saying the unsayable needs often needs to be practiced in a safe space before we feel ready to confide. For this safe-space practice, I am eternally grateful to my own baddass therapist who helped me stumble and fumble my way to emotional honesty with my friends and family.
RECLAIMING IDENTITY
It’s essential that we find ways to remind ourselves of who we are beyond caregiving. This means playing multiple roles to the extent possible. It helps to maintain hobbies and connections with friends, family, and community outside of caring. Even if we have next to no time for actively engaging, maintaining ties to a range of roles helps remind us of the fullness of who we are. I recommend maintaining a practice of doing at least one thing that belongs only to you, be it reading, exercise, art, study, whatever reminds you that you’re more than your caring role. Ironically for me, caring might have made me a more well-rounded person, as I became militant about seeking opportunities to connect with my non-carer self.
HOW THE REST OF US CAN STEP UP
If you’re not a carer yourself, chances are you’re standing next to someone who’s running on fumes.
First things first: carers do not need your pity. We are strong, we are relentless, and we are worthy of admiration.
Secondly: don’t say “let me know if you need anything”. Those are just words. They’re platitudes designed to make the speaker feel better but land pretty clumsy with the carer… though the carer will usually just say thanks and get on with their day. They’ve got enough on their plate without having to figure out how to help you help them.
And please, “don’t worry, everything will be fine; you got this”, is total bullshit. Yeah, maybe they got this. But everything will not be fine. People toss out throwaway lines like this to make themselves feel better. It only alienates the carer by showing you have no idea what you’re talking about and aren’t making the effort to learn.
Here’s how you can offer help that really lands:
OFFER PRACTICAL SUPPORT
There’s no shortage of ways you can help out practically. Anything from bringing over a few home-cooked meals, to offering a ride, to taking the kids for a few hours, to mowing the lawn. And to offer a few hours of respite from caring would mean the world to someone who needs to connect with other aspects of themselves – taking over caring while the carer has a coffee with friends or engages with their own hobbies is a priceless gift. The important thing is that you mean it when you offer it so the carer is relieved, not burdened with guilt. Make your offers specific so they land right: “Can I drop off dinner on Wednesday?”, “I’ll do the school runs this week”, “Let me sit with her for an hour so you can take a nap.”
SEE THEM
Ask how they’re doing. And really mean it. Be there for the answer, especially if it’s messy. If you can actually be there for a carer, they will tell you their messy truth and what they wish for. Meet them where they’re at, and you can relieve some of the pain of perpetual misunderstanding. A carer may be strong, but their resilience isn’t infinite. Don’t glorify their sacrifice. Honour their humanity. Validating the reality provides more relief than you’d think. Check in regularly, even if they don’t reply. Your caring intentions will cut through the isolation and make a difference, and they will feel seen if you keep hanging in there.
CHALLENGE SYSTEMS
The big-picture way to help would be to actually try to make a difference at the systemic level. This isn’t symbolic; it’s life changing. Donate to causes, advocate for better supports and policies, respite options, funding, and mental health support for carers (while some carers are offered some degree of support, many are not; I’ve never been offered a scrap of support). And vote with carers in mind. Hell, every election day I grill my local representatives for each party about what their policies are for improving the lives of individuals living with intellectual disability. That’s my pet cause, the closest to my heart. Not one representative has ever been able to answer a single one of my questions. We can change that. Just as women’s rights, children’s rights, Indigenous rights, LGBTIQ rights, and so many more have become real voter issues that can sway election results, the same can be done for all domains of caring.
THE MEANING IN THE STRUGGLE
Carers live where love meets endurance. The strength of a diamond, is, as they say, forged under intense pressure.
What keeps many carers afloat is the meaning they find in the struggle. Their love for the person they are caring for, their sense of duty to care, their moral conviction in what’s right.
But meaning doesn’t erase pain or ease exhaustion. It just helps everything make sense. And when things make sense, it’s easier to keep putting one foot in front of the other.
Resilience isn’t about being optimistic in spite of everything, or being tough enough to take it. It’s about finding ways to stay human when life demands of you what is not humanly possible.