Caregiving Misperceptions and Realities
What are our socially conditioned assumptions about caregiving, caregivers and respite? What can we do to support one another in our communities?
Carers Week has just ended. This year’s report by Carers UK gave evidence that “Despite their huge contribution to our society, many carers still feel invisible, face significant inequalities, and lack adequate support” (Helen Walker Chief Executive Carers UK).
I appreciated Dr Rachel Molloy’s article calling for more advocate support for carers. There are many situations where we are the sole interface, point of contact.
The answer is not always, ‘take a break, get some respite from caring.’ I had a few days away, and it wasn’t all about relaxing.
The Problem with 'Self Care' On the individualization of systemic failures By Anna De La Cruz:
“The focus on individual solutions suggests that our burnout and stress are personal failures, rather than systemic ones.”
I encourage you to read the article by Anna because I think all caregivers feel ‘guilted’ and frowned upon. Being told to do xyz to care for ourselves can feel disrespectful, and reinforces the ‘normalisation’ of systemic failures.
What are our socially conditioned assumptions about caregiving, caregivers and respite? What can we do to support one another in our communities?
Personal Reflections on caregiving realities versus misperceptions.
Anna’s article brought to the surface several caregiving misperceptions that may resonate with you. I think these thoughts have been simmering in me for a while.
Long gone is the Victorian era of large households to care for several generations under one roof. However, caring behind closed doors persists as a societal norm, with the burden of care often falling on the shoulders of one person.
While care and caregiving have been devalued as an activity by society, there still seems to be an assumption that care will be readily accessible and available when needed. Uh no! Maybe in a hospital, but afterwards, who coordinates and does hands-on care support?
Caregiving is relegated to silence or default assumptions/expectations…until reality hits with a health emergency.
There are several misperceptions about long-term caregiving. One is the concept of productivity born from the ‘Industrial Revolution’, where transactional, task-oriented, time, and motion studies improved the economics of our human effort.
While some aspects of our care routine are repetitive, caregiving is a relational, not a transactional process. We sustain dignity and respect by engaging with, not ‘doing to’ a person. I can’t ‘checkbox’ comfort, or put a timer on expressing love. We can’t apply productivity.
Imposing production line measures, thinking we can do things more efficiently, faster, or easier, or stop caregiving spontaneously, is beyond incongruous.
The reality is that we optimise situations for the care, comfort, and well-being of our loved ones. We must make careful trade-offs between risk and benefit, rather than prioritising productivity. This includes advocating for ourselves by taking our safety, health, and capabilities into consideration and setting our boundaries. This is why care solutions are unique and need to be personalised, not generalised.
Economics and productivity are objective. Humans are unique, relationships are entangled full of personal baggage, and so caring is subjective. There are no smooth cookie-cutter solutions here!
Another misperception is that we can control or manage ourselves to optimise caregiving. Caregiving is not about management or control. To state the obvious, it’s about giving in response to another human being’s needs. Caregiving is unpredictable and constantly shifting, especially if a health issue is unstable. It means we become experts at pivoting and adapting1. We cannot control symptoms. Anticipating needs and agility supersede project management as essential skills in caregiving.
The underlying issue is that caregiving is now synonymous with compensating for potential communication gaps in a fragmented healthcare system, and we take on an increasing burden of project management and communications. My mantra is ‘never assume anything.’ It’s not just symptoms we can’t control, and it’s not just our loved ones’ needs we have to try to anticipate.
We constantly feel the tension and pressure because caregivers stand at a threshold, interfacing with systems that focus on productivity while we defend and advocate for our fragile, ‘humaning-hard’, love-bubble, often alone.
We're not failing ourselves or our loved ones in how we care for them. The systems and society are failing us with misperceptions, inappropriate goals and misaligned expectations. And with all of that, we remain the single point of contact and glue for another person’s care, until we have to make the difficult decision when the equation can no longer be balanced safely. (‘Like the times when I had to…’ insert every carer’s trauma of having to phone the ambulance against someone’s wishes, or admit a loved one to a home.)
Trying to set boundaries around our energy and time can feel like an impossible task with a never-ending caregiving list, and well-meaning people care-splaining what we need to do. Something’s gotta give. It’s no wonder we can feel we’re not doing anything well for our loved one, in other people’s eyes, or our own.
We are humans, not superheroes, and a bubble bath won’t reduce our workload and emotional labour as caregivers. Unfortunately, I believe that burnout is not something we can easily avoid, but we can reduce its impact, speed and fallout. Contrary to popular belief, ‘respite’ can often mean more, not less, pressure.
Orchestrating everything to ensure our loved one has food, support, and emergency plans in place is the basic requirement for our absence. Coaching and reassuring loved ones towards our absence is a next-level need.
‘Me-time’ breaks require even more effort before the few days away, so that we can recalibrate to consciously capitalise on the time, not clock-watching during the break and upon our return, shift gears again. Caregivers can’t spontaneously get up and go.
Why do we, as a society, default to thinking respite is the answer? All or nothing? Why is the absence of caregiving the solution?
As an ‘unpaid’ caregiver, during a respite break, my very human brain can’t switch off completely—it’s called love. A brief check-in text or call can offer me the peace of mind to enjoy the rest of my day. Would that mean to some I’ve failed to ‘switch off’ from caregiving? Uggghh. Economic labels and robotic detachment.
You can see why ‘going away for a break’ is not simple, and its benefits can be easily and quickly negated.
Can we grow intergenerational communities of care? Can we shift the narrative from behind closed doors into open discussions? Can we establish local neighbourhood connections and mutual support, allowing for small breaks within our routine?
Case in point, my recent Respite and Review: a week of pre-planning, meal planning, checking medications, neighbours primed…and planning what I needed to get done for myself during ‘respite.’ I’d say that eighty per cent of the few days away were spent on actioning overdue actions on my personal to-do list. #1 was a comprehensive health check, for my sake and my mother’s! I’m very aware of the health inequalities as a caregiver.2
So, like Anna suggests, while I hope for change, we can proactively start to change the narrative around caregiving away from ‘caresplaining’3 to the carer on what they ‘should/shouldn’t’ be doing or ‘take a break’ or respite—towards acting locally in our communities, sharing daily tasks and errands. For example, shopping, collecting medications, preparing meals for others, and driving to medical appointments.4 Or simply, being a good friend and ally and asking, ‘What’s a good time to call for a short catch-up?’
We, the caregivers, need care, too5. Caregiving is what we do, but not all we are6. Respite time away is not always the answer, and it wouldn’t have to be if we had stronger support systems day-to-day. Melding into our routine, doing the dishes in the sink, without fanfare, listening and helping without expectation of praise, is ‘empathy in action’. Thank you!
We, the caregivers, need care, too. Caregiving is what we do, but not all we are.
The premise: Who started Carer Mentor and Why?
We can redefine care and caregiving in our communities: one cup of tea/coffee, one errand, one conversation at a time. Define your care team. Build your Caring Community.
We can support one another by leveraging our experiences, sharing empathy, and inspiration.
What misperceptions about caregiving have you encountered recently?
Have you ever felt that a respite break was more of a burden than helpful?
Thank you for reading my soapbox moment!
Podcast Recommendation. Mary Bourke Who Cares?
These episodes may no longer be available on BBC sounds.
Thanks to Dr Rachel Molloy for guiding me to this podcast. Broadcast on May 19th, it will only be available for the next 2 days.
Painfully hilarious, these short, under-15-minute episodes made me cringe. I was impressed by her ability to ‘tell it straight’ with her sharp, incisive wit.
Five years ago, Mary Bourke’s husband had a stroke, and she immediately became his carer. It’s a job no one wants - and one that comes with no formal training, and very little support. Guilt, isolation, toilets, and endless, endless admin - welcome to the day-to-day reality of being a carer. There are more than 5 million carers in the UK - but who cares for the carers?
Through a mixture of interviews and stand-up comedy, comedian and carer Mary Bourke investigates, with the help of friends and fellow comedians with caring responsibilities.
In episode one, Mary discovers what it’s like to be thrown into the system, with guest Dreenagh Darrell and stand-up from Al Barrie.
Presenter: Mary Bourke, Producer: Katie Sayer, Executive Producer: Jon Holmes
Please ‘❤️’ LIKE the article.
Pam Johnston’s Planet Care. Where adaptability is your superpower is a great example of how the ‘care’ world is very different. When we were caring for Dad, the accelerated step-down declines left little time to adapt or acclimatise. Pivot, pivot, shift was our caregiver dance. Flexibility and agility to move with the flow saved me.
‘For equality today and tomorrow we need to talk about health inequities and unpaid carers’ June 12, 2025 Carers UK, Director of Devolved Nations, Richard Meade:
Carers Week this year is about striving for greater equality for unpaid carers. I think for me, health inequities that are associated with unpaid care are some of the worst consequences that can derive from caring, and something we all need to talk more about. Unpaid care should be considered a social determinant of health and must be the focus of a public health response by our governments if we are to close the health gaps created by caring.
‘Caresplaining’ is a term caregivers use about unsolicited advice. It may be well intentioned but it isn’t helpful . Like mansplaining, caresplaining disregards what we already know, and often means we have to explain/justify our choices to someone or respond in gratitude?!? Who’s comforting whose pain?
Last year’s Carers Week, I highlighted actionable ideas to help a caregiver. It’s the seemingly small things that can make the most significant difference. Carers Week UK. June 10-16, 2024 Unpaid Carers have 'No choice to care'. Can you support caregivers?
Celebrating Carers Week: Why They Are Central to What We Do Marc Barnacle shares how his charity T.I.M.E enables carers and their loved ones to have quality moments together.
Being a young carer is not a choice. It’s just what we do. The voices and experiences of young carers and adult carers from across Wales Ollie Mallin (17 years old) shares this
I care for my younger brother, who has many complex additional needs. I’ve cared for him since I was five. I wouldn’t say that my caring role impacts my life; I would say that it is my life. However, caring does put a strain on other parts of my life. School has always been hard for me, teachers haven’t always understood my experience and my caring role has made it very hard for me to stay up-to-date with coursework or to focus in lessons.
In a similar, but different way I say to people I’m a carer or ‘I look after my mother’ but in the same breath I highlight the other roles I have in my life: Mentoring, business owner, supporting other caregivers through my publication website. I work hard to sustain these.
Two great takeaways from your post. "Trying to set boundaries around our energy and time can feel like an impossible task with a never-ending caregiving list, and well-meaning people care-splaining what we need to do." "Caregivers need care, too. Caregiving is what they do, but not who they are."
Many kind and loving people tried to tell me what to do when I was caring for my husband, but I knew him best, and some of their well-meaning suggestions just would not work.
As a psychologist, I thought I had the tools to manage the changes in our lives as more caregiving became necessary. But I was wrong. I needed respite care, family involvement, and outside services to support me through the day-to-day wear and tear, and I was better prepared than most. Many people have no prior training or experience when taking on the role.
This is a stunning takedown of the 'Industrial Revolution' approach to the human heart. You’ve articulated the exact friction I feel: the world wants a spreadsheet, but caregiving is a living, breathing landscape. I particularly felt your point about respite being a 'burden' of pre-planning. We don’t just 'go away'; we orchestrate a small miracle just to step out the door. Then there is the guilt. Then there is the actual shifting of gears--easier said than done.
In my own work, I call this 'navigating the new map.' We aren't failing the system; the system was never built for the reality of 'humaning-hard.' Thank you for reminding us that doing the dishes without fanfare is the ultimate act of empathy. It’s the small anchors that keep us from drifting.