North Yorkshire mum Sue Storey has worked for the NHS for two decades – and has been a carer even longer.
Sue, a medical secretary for CAMHS in Harrogate, juggles her work duties with looking after loved ones and would like to see unpaid carers receive more help.
“It’s a hard job. I don’t think carers get as much support as they should. It’s nice that our Trust supports carers, but in the outside world more help would be welcome,” she said.
Sue first became a carer when her daughter, Christine, suffered a five-hour seizure in 1999 – when she was just two years old.
The seizure left the toddler with epilepsy, deafness, ataxia and communication difficulties. Later on in life, she was also diagnosed with autism.
“After our daughter transitioned into her own supported living accommodation, we thought, yay, we can live a little, but in 2023 my mum was diagnosed with Alzheimer’s,” said Sue.
“Then last September, my dad was diagnosed with pancreatic cancer. It was a rough time, as he was not fit enough for chemo and always in pain. It was hard to watch him get worse.
“He had been my mum’s main carer, and tried to do everything himself, but eventually he turned to me for help and together we managed to make his life a little less worrisome.
“We had carers coming in to help out, but I became my parents’ main carer, cooking their evening meal, making sure that they had their medications and doing their shopping.”
Family sadness
Sue lost her dad Ken in May this year, just days before his 82nd birthday. He passed away peacefully at St Michael’s Hospice in Harrogate, and she has set up a GoFundMe page in his memory.
“I managed to reassure dad that I’d look after mum before he died. Now I have conversations with mum about dad when we go out for walks in the local fields, she said.
“It’s been a pretty hard time, and I do miss him, but I wouldn’t change spending the time that I did with him in the last few months of his life, being his personal little shopper and chef.
“He’d say on a Sunday, ‘don’t give me too much food Sue’ but I’d ignore him, rather give too much than too little, (I’m a bit of a feeder) and he would always have space for pudding.”
Looking to the future
Now Sue’s focus is on caring for her mum Eva-Maria, who has short-term memory loss due to Alzheimer’s.
Eva-Maria has a team of carers who visit her four times a day, and make her breakfast and lunch, but she always visits Sue for her dinner – with the carers dropping her off at Sue’s house.
“I wash the dishes, and she dries up, but has forgotten where they go, so it’s a joint effort. She used to be a great cook but can’t even make a cup of tea now. It’s so sad,” said Sue.
“She still loves jigsaws puzzles though. I give her a piece and say, ‘I think that goes there but I’m not sure’, then she puts it in and is really pleased with herself.
“Everyone at work has been so supportive during such a horrible time, and their kind messages have got me through some tough moments.”
Eva-Maria is adamant that she wants to remain at home, despite the long-term prognosis for Alzheimer’s, and Sue is equally determined to support her mum’s wishes.
“She has the support she needs and has never been a wanderer. We will only look at other options if that changes, and she needs more care that we can provide at home, she said.
“My mum hates change, so I keep things simple. I make her loads of tea and, even if she likes wearing the same clothes, they get washed and she wears them again.”
Advice for other carers
Sue recently took a bit of a break with her husband, to recharge her energy, and advises other carers to try and find time for some rest too – as carers need caring for as well.
“We were so worried about going on holiday but needed a break. Unpaid carers should be treated the same as paid carers, and be recognised as such,” she said.
“I’d like to see unpaid carers get extra support on a national level, but I’m thankful for the support for old and new colleagues. It has helped me through tough times.”
- Advice on accessing support for carers is available on our website. The carers hub web pages have been co-created for and by unpaid carers.
