Her career achievements were remarkable considering she had been simultaneously caring for her mum, Maureen Shields, since the age of 14 when she started to lose her sight.
But in 2018 everything changed.
Maureen woke up one morning and couldn’t move.
She’d developed osteoporosis, a condition which weakens bones and makes them more susceptible to fractures.
Maureen had spinal fractures that prevented her movement and caused her excruciating pain.
Denise was forced to give up the career she’d worked so hard to build to look after Maureen full-time.
Denise, now 54, said: “It’s almost like grieving the loss of your own life. You’re grieving because of the loss of what’s happened to somebody else, and seeing somebody in constant pain is hard.
“It’s also just incredibly mentally and emotionally wearing having to not only deal with your own life’s disappointments and problems, but also the emotions that they’re going through.”
Denise lives with her 89-year-old mum in a flat in Vanbrugh Hill, Greenwich and has said the experience has had a profound impact on her mental health and wellbeing, to the point that she’s been prescribed antidepressants to cope.
Never in doubt was it that she would be there for her mum, but the lack of support from the government for unpaid carers like her has led to burnout and a feeling of being abandoned.
“There’s a lack of support, a lack of understanding, and a lack of recognition,” Denise said.
“I just don’t think people really understand just how all time consuming it is, and to be honest, it is very emotionally draining.”
After the osteoporosis diagnosis the family moved from Loughton in Essex – their home for over 20 years – to Greenwich in order to be closer to King’s College Hospital and because they couldn’t adapt their Essex home to Maureen’s needs.
Maureen had a series of operations which stabilised her condition, but it left her with virtually no mobility.
Denise has looked after her mum on a near daily basis since then as she can’t afford to get paid carers in to help.
She praised the work the NHS did in treating Maureen, but was critical of the provision for care that is provided afterwards.
She said: “There is just this assumption that the family’s going to step in. There is nothing wrong with that, but then you realise there is very little support out there to recognise what you’ve lost in your life. It was life-changing for her, but it was also life-changing for me.”
Denise felt that since she started looking after her mother in 2018, she has massively missed out on living her own life.
She said: “I mean not just financially, career-wise, socially, but all hobbies and interests have been completely put on hold. Even things like your own fitness levels and personal relationships.
“You feel like it’s not just the person who needs to be cared for whose life has changed. It’s almost like you’ve got an illness too.”
Denise said she even has trouble attending to her own medical needs due to the lack of available appointments. If she’s not able to find someone to look after her mum at the time when a GP appointment is offered, she can’t attend it.
Denise said she has been on antidepressants for the past six years, something she directly attributed to the stress of being a full-time carer.
She is often told by people to take a break, but that is something that is incredibly difficult for her because she would need to find someone Maureen is comfortable with, who is able to look after her and she is able to afford.
Her own retirement is in doubt
Since becoming a carer, Denise hasn’t been able to pay into her pension. For work, she has been able to pick up some zero-hour flexible contracts for minimum wage.
“While you’re going through this journey you talk to other people and you find that it’s common across the board,” she said. “You start to realise that if people weren’t stepping in and doing what they were doing, the whole adult social care system would just collapse.”
Denise was critical of the government’s stance on adult social care. She said: “I can remember for at least the last 10 years that it’s going to be reviewed.
There’s been loads of these reports, and you just feel like saying to people, ‘Come on, we need to address this’.
“We need to, not just as individuals but as a society, look at how we’re going to handle this.”
When asked what changes she would like to see the government make to adult social care and the role of carers, Denise said: “I think they could really do a lot more in terms of allowing carers to have time off, especially with work.
“You’re allowed to take two or three days’ unpaid leave, but that’s nothing. It doesn’t even begin to cover the number of hospital appointments that you’ll need to attend.”
She also hoped that a system could be brought in that would allow for carers to be registered and recognised. “It would allow us to be able to go to employers and people and say, ‘I am a registered carer’.”
Denise also wanted the government to recognise that often carers are skilled workers who could be put to use helping society if there was more of a push to get them to work from home. “There’s a whole skill base out there of people like me who have got the qualifications and have got the work experience,” she said.
“I think that’s another frustrating thing. They go off and supposedly do these reviews, but they never ever seem to talk to us. We’re not just sitting here complaining. We actually feel that we’ve got things we could suggest.”
Protest outside Parliament
In an attempt to drive the issue of carers into the public eye and onto the government agenda, Denise took part in a protest on Tuesday (July 22) outside Parliament.
As she can’t get away from her caring duties, Denise wasn’t there in person. Her story, alongside those of several other unpaid carers, will be broadcast on LED screens outside government buildings in an attempt to get politicians to listen.
The protest, which was set up by Uncommon Creative Studio and is backed by charity Carers Trust, has been launched in conjunction with a petition which calls on the government to give all unpaid carers the legal right to a break.
Kirsty McHugh, CEO of Carers Trust, said: “It’s incredibly disappointing that the UK Government still hasn’t given unpaid carers a right to respite. For decades, successive governments have depended on unpaid carers to provide social care on the cheap, which has delayed the need to come up with long-term funding and support.
“Whilst the government is focused on strengthening employment rights, it seems to have forgotten unpaid carers – who can’t take a break at all.”
