Since his wife was diagnosed with early-onset dementia in 2020, Paul Kemp has gradually seen all aspects of his normal life slip away from him.
He was forced to quit the job he loved as a manager at a tyre company to care for his wife, Sandra, when they were in their early 50s.
Having to navigate the health and social care systems with “no support”, Paul has seen first hand how broken the system is.
Crippling financial burden
“It’s an absolute nightmare. No one helps you navigate it,” Paul, 59, said. Because his wife Sandy was not assessed to be in enough need, they were not offered state social care, and private carers were prohibitively expensive.
Asked how he would go about fixing the system to save others like him from having to give up their jobs and homes to sort care for their loved ones, Paul said simply: “There’s so much of it broken, I wouldn’t know where to start.”
“It’s a big nightmare of a subject because they’ve let it get so bad it’s going to take a lot of work to put it into order.”
Paul struggles to see how the ‘broken’ system could be fixedAndy Burnham has pledged to overhaul the adult social care system completely, bringing forward Baroness Louise Casey’s independent review and indicating he might support the formation of a National Care Service.
For Paul, it is clear the system needs fixing. But he questioned how this could be done.
Sandy is too unwell to feed or clothe herself, or even talk. She was finally granted carers three times a day after she went into hospital in November, but even then she was denied Continuing Care on the NHS.
One of the biggest impacts of her diagnosis was financially – before Paul got his pension aged 55, the couple “got into large mortgage arrears”.
He lives with Sandy, 58, in their house in Kent – he has had to sacrifice his job, sell off collections of stamps and model train sets and give up his social life to dedicate his time to care for her.
Paul added that carer’s allowance, at just £87 per week, does not even begin to cover the “phenomenal work involved 24/7” in caring for a loved one.
‘It can be heartbreaking’
Then, he said, there’s the mental load of caring for Sandy and the isolation.
“The one thing I miss more than anything else is the laughs and jokes I had with the other guys at work,” he added.
“I used to sing in bands and everything. I used to like going out fishing. All my pastimes, I’ve had to give up. It can be quite soul-destroying. Even with carers coming now, there’s still a lot to do each day.”
Last week was the first time in six years that Paul had his first week’s respite from caring for Sandy.
It’s all the more heartbreaking because Sandy herself used to work as a mobile carer.
“She was a lovely person,” he recalled. “She really wasn’t a needy person at all. Everyone loved her and she could walk into a room of 100 people and get them all talking. “
The couple have worked “long hours and damn hard” since they were 16, and now he said he feels let down by the system.
On the matter of Burnham and his vow to reform social care to make it fairer, Paul was unsure if this would materialise. “Actions speak louder than words,” he said.
If you’re worried about yourself or a loved one, Alzheimer’s Society’s dementia symptoms checklist is a helpful first step in starting a conversation with your GP. Visit alzheimers.org.uk/checklist or call their Dementia Support Line on 0333 150 3456.
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