Nobody Hands You a Manual for Caring for Ageing Parents
The phone call came in January 2022.
My stepdad had had a stroke. Covid restrictions were still in place, so we couldn't visit him. We couldn't sit beside his bed, couldn't ask the questions face to face, couldn't do anything except wait by the phone and try to piece together what was happening from snatched conversations with busy staff.
He'd had a TIA the year before, but this? This was not on our bingo card.
After three weeks in hospital he was moved to a care home. When I finally managed to speak to a physiotherapist, the honest, realistic picture was this: we could hope he might one day manage to transfer from a chair to a commode.
I lived 130 miles away. Within weeks, my husband, our dogs and I had moved into my parents' home, because there was no other option. My stepdad came home with a reablement package, guaranteed for 6 weeks. That was before he was rushed back into hospital with a strangulated hernia. And just like that, the care package was gone. My parents were left to muddle through with social care, paying for everything themselves, because they don't qualify for free or discounted support. And it is not cheap.
Fourteen months later, the phone rang again. My mum was being rushed into hospital with sepsis and a pulmonary embolism. She very nearly didn't make it. After six weeks, she was ‘medically fit’ for discharge. I'd braced myself for her to come home weak. I hadn't expected her to come home unwell. Her discharge was rushed and poorly coordinated. As an occupational therapist, I knew it didn't have to be that way.
Suddenly I was caring for two disabled parents, with my husband's help and very little else.
Here's the part that still frustrates me: I've spent my career inside this system. I know the assessments, the pathways, the jargon, the right questions to ask. We had (what felt like) half the NHS involved at one point or another, and yet so little of the help actually helped.
If I struggled to navigate it, knowing what I know, what chance does anyone else have?
The manual nobody gives you
When you become a parent, the world drowns you in guidance - books, classes, health visitors, well-meaning strangers in supermarkets. When your parent has a stroke, or sepsis, or simply starts to fade, you get a discharge summary, maybe a leaflet, and a phone number that rings out.
Nobody tells you:
What you're allowed to say before you agree to a hospital discharge - and what happens if you say no
What a carer's assessment is, that you're entitled to one, and why it matters even if you think you're coping
How self-funding actually works, what it costs, and where the hidden traps are
What reablement is, how short it is, and how quickly it can vanish
That burnout doesn't announce itself - it creeps in while you're busy being the strong one
That "they're medically fit for discharge" and "they're well" are not the same thing
You're expected to become a care coordinator, an advocate, a benefits adviser, a manual handler, a nurse, a physiotherapist and a project manager overnight - usually while holding down a job, a home and a family of your own.
I did that for four years. This year, I finally stepped away from my job, because I could no longer balance working for someone else, navigating my parents' latter years, and protecting my own wellbeing. Something had to give, and I refused to let it be me… or them.
Our system has real gaps, and families are quietly absorbing the cost of them. I can no longer stay quiet about that.
(A note before we go further: I share my parents' story here with their full knowledge and blessing. It's their story as much as mine, and they want it to help other families.)
What ‘the ot who cares’ is for
The OT Who Cares is the manual nobody handed me. It's written from both sides of the hospital bed - as an registered occupational therapist who understands how the system works, and as a daughter who has lived through what happens when it doesn't.
Here you'll find practical, evidence-based guidance on the things I wish someone had told me at the start:
The questions to ask before a hospital discharge - so you feel informed and confident, not railroaded
Recognising and recovering from carer burnout - before it breaks you
Navigating assessments, funding and self-funding care - what you're entitled to and how to ask for it
The equipment and adaptations that genuinely help - and the ones that gather dust
No jargon. No platitudes. Just honest, practical information from someone who has sat where you're sitting.
If you've just had your own version of that January phone call: I'm sorry. You're not failing. You were never given the manual.
Let's start writing yours.
