How it was for Debs
Debs is an artist just turned 60. In 2019, her late mother Margaret suffered a stroke and fell rapidly into dementia. Margaret’s remaining years were for Debs a labyrinth of efforts to find care homes and financial support. Debs talks of traumas and blunders. One provider mis-guessed from Margaret’s address that she was wealthy. Another time, Margaret’s carers allowed her to become dehydrated. But Debs is full of praise for organisations that helped her, in particular AgeUK.
I asked Debs what would have made the biggest difference to her own burden during those final two years of Margaret’s life. On this point she had an immediate answer.
“Better information and guidance about the help that was available. There is some – lots – but you’ve got to know where to look for it, and what’s the best thing to say when presenting your case. And I’d been myself on the books of a care organisation, as an art therapist, for a dozen years! Giving carers a spot of ‘me’-time, and a chance to share information.”
Debs was interested to hear of the government’s white paper People at the heart of care: adult social care reform. It devotes a fair number of words to the need she identified. There’s a chapter headed ‘Empowering people who draw on care, unpaid carers and families’, with a section precisely on ‘Improving information and advice’. The white paper spells out the need in these words:
“Even before people are able to draw on support and care services, they struggle navigating a complex system and understanding what might be available to them. Equally, unpaid carers can also find it difficult to find support they may be entitled to, and in some cases, feel that the support on offer is insufficient to maintain their own health and wellbeing, support their employment, and achieve the outcomes that matter to them.”
That’s a fair statement of the problem as identified by Debs.
Further on in the white paper, we read this:
“In addition, the challenges of providing care can have a big impact on the careers of carers and limit their participation in the workplace. This impact is felt disproportionately by women, who tend to be the main carers within households. 28 percent of adult female carers felt that their employment had been impacted as a result of providing unpaid care, including needing to reduce responsibility at work or work fewer hours. This is compared with 17 percent[AD1] of adult male carers.”
So an imbalance is recognised in a paragraph from on high. It is examined in greater detail by researchers on the ground. A report in 2021 from a team led by Ludovico Carrino of King’s College London had the title: ‘Should I care or should I work?: the impact of working in older age on caregiving’. Which puts the dilemma in a nutshell.
To find Carrino’s report online, search on its title. We haven’t been able to include a link. It’s summarised in a blog post from Claire Turner of the Centre for Ageing Better.
To the 28/17 percent comparison quoted in the white paper, Turner adds others. At all stages of life, women are more likely than men to take time off for childcare, more likely to be in part-time jobs, more likely to be paid less. Women reach middle age with life savings around half those of men. And at that age they often find themselves in the role of ‘sandwich carers’, having responsibility both for offspring and for parents who are increasingly in need of care.
AgeUK, the charity that helped Debs through Margaret’s final years, published a document in 2019 about the plight of sandwich carers. This was when the government’s intention of a social care plan had been promised and delayed five times.
The document tells the stories of four particular women and their problems:
- Sarah, caring for her mum Jean 24/7 while raising two children and studying with no support
- Rasila, who took early retirement to care for her sister with Alzheimer’s
- Joyce, caring for her husband David 24/7 after his stroke, and unsure how long she could continue
- Elaine, who had to give up her job to care for husband Michael since his brain injury
If you clicked through to the document, you’ll have seen its title. ‘Breaking point‘. And what happens after breaking?
Perhaps the promised actions in People at the heart of care will begin to mend the situation. The Local Government Association’s response to the white paper welcomed it for its language and attitudes, but felt that the money sums it mentioned were unlikely to be adequate, and wished to see a timeline for its implementation.
Perhaps the support organisations will find their campaigning work vindicated in good changes. Perhaps we all need to be more aware of, and clear-sighted about, what awaits us between now and the end of our lives.
But too many women are getting broken now.