Everyone is aware of the limitations and cost of social care provision. For those of us who have had to navigate the care system, the lack of person-centred care is all too evident.
It isn’t the lack of social care that is the reason why so many of us are putting ambition, careers and family life on hold. The vast majority of us take on caring roles not because we have to, but more out of love and respect for those closest to us.
I was privileged enough to care for my mother who was diagnosed with vascular dementia in 2015. The death of my father in 2016 accelerated the progress of her condition, with her eventually needing 24 hour care. Surviving her husband by only four months, we had good days, bad days, funny times and excruciatingly sad times. But cake pretty much became a feature of my life, with an average day looking something like this:
Is it time to get up yet?
Its 2am. The blue lights and sirens of a Friday night in East London have finally lulled me to sleep. Mum now has no concept of night and day. “Is it time to get up yet?” “Not yet, it’s cold. Go back to bed”. In another hour or so the trains will start and the first flight out of London City Airport will pass overhead. “Shall we go downstairs now? Is it time?” I give in about 3.30am. Black coffee and a slice of Battenberg. Mum’s zonked out it the armchair – I’m wired.
Have I taken my tablets?
This phrase is repeated at various points throughout the day. “Yes. No more now until tonight”. “Are you sure? Phone Mary, she’ll know about the tablets”. Quell my frustration by demolishing half a packet of Ginger Nuts.
Oh the thrill of it all! A frenzied tidy up of the endless laundry, wet wipes and other incontinence paraphernalia so that we can sit and enjoy the lovely fruit cake you’ve kindly baked for mum.
Meet a friend in town for coffee (and a slice of Red Velvet…).
What’s for dinner?
By now mum is hardly eating. We are advised to tempt her with all her old favourites. So here we are in front of the TV with jam sponge, more Battenburg and a packet of liquorice allsorts…mum manages half a packet of crisps.
1130pm and so to bed, ready to start afresh tomorrow.
If you are caring for someone and need advice or support try www.carersuk.org. For dementia specifically www.alzheimers.org.uk has a wealth of practical information and an excellent forum (Talking Point) for when cake isn’t just cutting it.