I’m 63, I should be drawing a pension but instead I’m a full-time carer. The real me went to drama school – but my brother died and my parents struggled so I had to give up. I was married and divorced, then married again. I spent years in retail and loved it, but had to give my job up to look after my son.
My son lives at home – he’s 26, autistic, with learning disabilities and type one diabetes. Being a mum and a carer has been my focus since he was seven. But then I’ve always been a carer, it’s how I was brought up.
My dad was always poorly and eventually got lung cancer. I did his washing, cooking, cleaning, and took him for his shopping, haircuts and appointments. When he died in 2009 I wondered what I’d do with myself.
Then my husband got ill with a rare brain disease. He was absolutely wonderful – but at the age of 45, at the peak of fitness, he was diagnosed with Frontotemporal Dementia (FTD). I had to spend 2 years fighting for a diagnosis. We were told he had 7 years at most, but he’s still here.
Since my auntie died I also look after a cousin, who’s 63 now. It took me years to get him diagnosed. People who call themselves his friends have manipulated him and I’ve had to fight through the court of protection to get control over his finances.
As a carer, I’m completely frustrated with medical professionals.
Our GP’s moved to the Patches system, but it doesn’t work for us. We used to ring and get an appointment. Now you have to fill in an online form with details which aren’t relevant, and you’re not asked about things that matter.
The system’s failing everybody. They don’t visit people at home – and us especially because they know I’ll look after him. We used to have a palliative care nurse visiting, but that’s been stopped.
I’ve asked to be given test results over the phone but the staff won’t tell me because they’re not medically trained. I know how to manage things if I have the information. When you’re waiting weeks for an appointment you panic.
And there’s too much box-ticking. They’re wasting resources with unnecessary tests or providing the wrong medication. Professionals waste time trying to explain things to my husband when he can’t understand. I’m doing a good job of keeping my family healthy. But I’m not a medical professional, just a housewife trying to do my best… and then when I reach out for help, they’re not available.
My third child was full-term stillborn; then I had twin girls, one lived a week and one 3 weeks. The professionals made mistakes. So over the years I’ve had to fight to be heard.
I’m confident and believe in myself. A lot of people don’t have a voice, and that’s where Carers Leeds comes into it. When you’re a carer you can’t discuss things with your family or moan at them, because they don’t come to you to listen to that. Carers Leeds is an outside ear. They don’t tell you what to do, they support you to make their own choices. It’s really difficult to do but I worked it out myself and got support with those choices.
The best thing about being a carer is that I know the people I love are being looked after. I do it right, I know they’re the safest and healthiest they can be, and can achieve their best outcome.
What advice would I give another carer? Think before you speak – whether you’re speaking to professionals the person you’re caring for. If you’re having a hard day, you’re tired and don’t feel well – take a breath, don’t snap. It’s not their fault. You can get really frustrated but it’s lovely when people compliment you, it’s nice to be reassured.
I spend a lot of time in the garden, that’s my peace and tranquility. When I’m stuck indoors I do family history – I’ve gone back to 1600.
And I have an amazing grandson. I had to fight to have access to him, but he’s here, and he has an identity. That’s absolutely wonderful.