Built by a former family carer, for family carers
v1 · July 2026
One carer spent twelve years caring for her father, from his diagnosis to his death. This is her story, in her own words — why she started CarersInfo, and what she's still working through, seven years on.
This story was first shared as a video. The full written version follows below.
I grew up in a children's home. I didn't grow up with my dad. At 18, I got the chance to live with him, and we both took it. I stayed with him for around 35 years, up until he died. Those years before his dementia — I guess they were our bonding years, if you want to look at it that way. We started to learn about each other and understand each other. I went to his Caribbean home for the first time, and that helped me understand who I am. I knew what it was like not to have him in my early years, so I was grateful for the time I had with him. Nobody explained to me then what I was expected to do, or how to do things, or what to expect from care to carer.
When I was about 43, I noticed my dad was struggling with a few things. Small things at first, but the struggle became more noticeable. He was assessed, and a week or so later a letter came back: vascular dementia. I didn't understand the big words. His decline was slow, with a few mini-strokes along the way, and I learned to recognise that a couple of weeks after one of those, something would change for him. It became easier to adjust to, in its own way.
I became a carer through the Jobcentre, of all places. I wasn't working, and after six months I was being pushed toward interviews — but I couldn't concentrate in them, thinking about my dad at home. An adviser suggested I become a carer. I didn't really know what that meant; I just heard that I could be at home, and I'd get some money for it. That was enough for me. So I accepted, and I did that for twelve years.
I didn't know what I was taking on: advocating for him, being assertive on his behalf, dealing with doctors, nurses, hospitals, emergency services, equipment providers, forms, social services. Nobody explained any of it. I wasn't given any pamphlets. I became his appointee without really knowing what that meant — responsible for his pension, his bills, all of it now official on paper.
Making sure he had something to eat. That he could get up, dress, come down the stairs. A comfortable seat, the TV on nothing that would upset or confuse him. Medication, in the right order, the right time, the right amount. It's a lot to take on. I could never really switch off — always monitoring him, making sure he was okay, still awake, still alive. I gave up a photography group I went to once a week, because caring couldn't share space with anything else. If there's one thing I wish someone had told me, it was how much there would be to do on his behalf — not mine, his. So slowly, I forgot about myself, and did everything around him.
The caring carried on for twelve years. He died in his late nineties; I was in my mid-fifties. After he died, I had about five days to sort the important things — the death certificate, the registry office, the Jobcentre. The Jobcentre is what pushed me over the edge, in a way. My dad had only been gone a few days, and they wanted to know when I'd be back to work.
One thing I noticed while I was there: I couldn't say my own name off the tip of my tongue. My dad's name always came first in my head. His date of birth always came first. Saying my own — the way it comes to most people without thinking — took me thirty seconds or so. I'm sure people wondered why it was taking so long. Twelve years of saying somebody else's name and date of birth first — it took a minute to remember mine. Altogether, that took about two years to work through properly.
One friend, who ran a gym class, asked me on the day of the funeral: "What Do I Want?" I still don't know what I want. But I know I haven't got it. Nobody's come to me and said, "your dad has passed, how can I help you now." I'm seven years in, or out, whichever way you look at it — and I'm still hurting.
I lost the structure I'd put in place without realising it. I'm still partly in it. I realised that again the morning I recorded this: seven years gone, and something in me still isn't ready to let go of it. I'm not upset at the loss of him — that was expected, and I saw it coming. It's the years of caring that have gone unacknowledged. Not unseen. Unacknowledged. That's not self-pity. That's what happens to carers — millions of them. Do they get a thank you when the caring ends? Especially not. There's no after-caring support, but there's plenty of support for the person who needed it. Where's the support for me, now it's ended?
The carer deserves to be seen and heard, and to feel that what they're feeling is okay — but they need somebody to say that to, even if it's only for three months. While we wait for that to exist properly, I built this site. What I want is for every carer who finds it to genuinely feel: someone sees you, someone hears you, someone understands you. Not just what you do — the person behind the caring. I'm not here to replace professional support. I'm here because I've been there, and I know that sometimes the most important thing is simply to be seen by someone who understands. If you've felt invisible in your caring, or lost after it ended — this is exactly who this is for.