For many disabled adults who need full-time care, they continue to rely on their mothers to carry out some or all of their care due to a lack of social care funding.
Our AccessAble Champion, Emma Purcell, shares her personal story of trying to live independently but still receiving support from her mother.
Emma’s adulthood with her Mum and carers
As a teenager living at an accessible boarding school, I felt free and gained the confidence to live independently with the support of my care team.
Fast forward to 2020 and the reality is so different. I moved into my first house in July 2017 and signed up to a live-in care agency. Within three months, I went through more than ten different carers. They either couldn’t speak English, had no safety training in manual handling, couldn’t drive my Motability vehicle and were unable to keep my home safe, clean and tidy. By October, my Mum gave up her job and came to live with me full-time and by August 2018, my parents moved from Somerset back to Hampshire. Since then, I’ve been having Mum care for me on a two-week shift basis alongside a second carer.
However, the mission to find a permanent carer is still ongoing. Since April 2018, I’ve had 3 care companies with 6 carers, all of which have not worked out.
In the past, I’ve also tried hiring my carers but that didn’t work out either. I prefer to have an agency oversee everything and I don’t like having the responsibility of being an employer.
Almost three years on, I’m doubting that I’ll ever secure that dream care team and may have to accept that Mum will continue to care for me for the foreseeable future.
I love my Mum and I appreciate everything she has done for me. However, I do feel the guilt that she had to give up her job and spend less time with my Dad to look after me.
Also, there will come a time when she can no longer care for me and I’m scared of what the future will bring in terms of the kind of care I receive.
Disabled adults receiving care from their mothers
What helps me get through this difficult situation is knowing I’m not alone. I know many other disabled adults who still rely on their mothers for care support.
In a survey of 150 people I conducted online, 44% said they do still rely on their Mum for care, with 55% saying they don’t. Of course, some of the 55% may still rely on other family members instead of their mothers.
This just goes to show mothers and other family members are so important in a disabled person life, not only as a parent but as a carer too. Let’s appreciate all the unconditional love and care mothers give to their disabled sons and daughters this Mother’s Day.