Maria’s mum Pauline has been let down by the social care system. Whether accessing support or finding care to meet her needs, the cost has gone up and the quality has decreased. But enough is enough.
My mum, Pauline, epitomises the phrases ‘wouldn’t hurt a fly’, or ‘doesn’t have a bad bone in her body’. She hates conflict and has a heart of gold. On top of this, she has a passion for animals, with horses sitting top of her list, and just below are rough collies who she has a sweet spot for.
These are the things that make my mum who she is. But since her diagnosis of Alzheimer’s disease, they’ve become lost and muffled as we have battled the care system.
Battling for support
Mum lives in local authority sheltered accommodation, but from day one it has been a struggle to get her the care she needs. Mum was initially denied support by the local authority based on a 2-hour phone call with Mum, disregarding mine and the doctor’s opinions.
After four months we finally managed to access support. But soon after, we realised we were only at the beginning.
Earlier this year Mum was left without care or a hot meal for over 2 months. After raising a safeguarding alert, we let go of the care agency, as they were unfit to be responsible for Mum. But agency after agency, the issues have been much the same.
We are now just over six weeks into our third care contract in 8 months with a company deemed outstanding. However, paying more for better quality care, means we are unable to afford carers coming in as often. While the care is good, there is a lack of consistency in the hours they can provide. One week they are here, the next week I hear no word. With a lack of familiar faces, Mum is increasingly opposed to accepting support.
‘I know that the stress of care and the system is accelerating mum’s decline’
In my eyes the jury is still out as to whether even ‘outstanding’ care is really meeting the needs to people affected by dementia and their families.
Raising the standard for quality care
I believe good care has minimum standards, not only based on the training of carers, and affordability, but humility too. Care shouldn’t be about limited time, but should be allowing those with dementia to do what matters most to them, with the people who matter most, for as long as possible.
Despite my best efforts, Mum’s social life is limited, and with that, we lose a huge part of her personality. She has always bubbled with positivity and laughter. She loves playing cards, and doing quizzes with others. Now, her dementia means she can’t initiate these activities, and without support and resources, neither can I.
Like so many, our roles are now reversed. I dearly miss our chats and time spent together. Facing the challenges of the social care system on top of this has impacted my own mental health. It doesn’t and shouldn’t have to be this way.
A system that works for everyone
I need to help bring about changes for all of those who do not have someone to fight their corner. I want to be their voice!
Since Mum’s diagnosis, I have joined forces with others as part of the Dementia Friendly London People’s Panel, challenging our capital to support those affected by dementia. However, while you may think all our experiences are similar, they differ vastly. We all see a care system in need of change, but borough to borough, county to county, access to care and support is different.
‘The care system is a postcode lottery. That is why all our voices and experiences matter.’
I want MPs and decision makers to not just hear the stories and experiences of the current social care system, but to really listen, and take heed. We’re not just talking about my mum and me, but also the vast and unfair experiences of many others.
With every call Alzheimer’s Society makes to Government, they rely on us to raise awareness of their calls with the right people, at the right time.
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