Graeme’s partner Ann lives with Posterior Cortical Atrophy, a rare form of Alzheimer’s disease which affects vision and spatial awareness. Graeme has experienced the social care system inside out, and is calling on Government to cure the care system now.
After starting as neighbours in London in 1987, Ann and I’s relationship developed through friendship and our shared love for music. Friendship blossomed into something a little more on Valentine’s Day 2000, a date chosen by Ann so that I'd always remember our anniversary!
Our lives supported each other. Ann supported me when I returned home for treatment after an accident in Indonesia. I supported Ann in her efforts to train as a teacher, and our move together to Cumbria.
‘We went to gigs together, travelled together, we enjoyed life to the very fullest; until 2007, when we began to realise something wasn’t right.’
From the moment we met, Ann was in the driving seat, literally – she loved to drive and to be behind the wheel. However, one day she asked me to take over. Going round bends started to upset her and she became easily confused.
Eventually, after a lengthy process, age 59, Ann was diagnosed with a rare form of Alzheimer’s called Posterior Cortical Atrophy. This affects vision and spatial awareness, which helped explain how she'd been feeling.
Leaving my job, it was my turn to repay Ann for looking after me.
We managed at home for a while, with some periods of respite and recovery for me from my own ill health. But Ann’s condition sadly declined.
Moving into care
After an accident in 2017 we knew she needed the full-time support which only entering a care home could bring.
While my knowledge of the financial support we could access for both Ann and I was extensive, due to my previous job, the process lacked clarity.
‘At every twist and turn there were decisions to make, when I simply wanted to spend my time with Ann.’
Living in the care home, I knew Ann missed music, and I did too. I started hosting ‘Feel the Blues’ gigs in the care home to bring music to Ann and raise awareness of how music helps those affected by dementia.
The gigs bought us both such joy. But seeing care from both sides, both at home and within the care home, I witnessed the pressure placed on the social care system. And when the pandemic hit, abruptly putting and an end to my visits with Ann, this became even clearer.
Fighting for face-to-face visits
The past year has been tough for all of us. But imagine how much worse it would have been if you couldn’t understand why it was happening; why you no longer saw your loved ones; why your carers stopped visiting or why they wore masks.
That’s why, working with Alzheimer’s Society, my local MP and members of the House of Lords, I started telling my story of just how difficult it is to understand and navigate the care system. We began the fight to allow care home visits to go ahead.
Throughout 2020 and early this year, I made an appearance on local radio, joined discussions on meaningful visits with Cumbria County Council, campaigned across social media, and held decision-makers to account in the House of Lords and Commons.
‘It was an incredibly challenging time being apart from Ann, but she remained my absolute focus.’
Knowing that my fight may enable me to see her again kept me going. With every new announcement, from allowing visits, to establishing the essential carers status and encouraging outside trips, I am pleased that our voices are being heard. I'm increasingly positive that further change is possible.
Ann’s normal memory of me had gone about a year ago, but the memory of my voice remained. With increased visits, I now hope, we can bring some of that spark back. We have been able to enjoy music and special occasions together once again.
I was gobsmacked to win the Dementia Hero Award for Campaigning.
This has given me the opportunity to talk about the importance of music for those who are affected by Dementia. I also want to raise awareness of Posterior Cortical Atrophy, which less than 5% – including Ann – are diagnosed with.
But more importantly I can be Ann's voice in the wider world. Ann was devoted to helping people - in the careers service, education and finally the civil service, and now that’s what I do.
I like to think of this as Ann’s award, I am carrying her work on. Everything I do is for her.
Curing the care system
Right now, our flawed social care system means that nearly a million UK families are struggling to care for their loved ones with the dignity and support they deserve.
‘Decades of under-funding have led to a system that’s difficult to access, costly, inadequate and unfair.’
Staff do not receive the respect or pay they deserve, and the system struggles to cope with ever increasing demands. But it doesn’t have to be this way.
The Alzheimer’s Society #CureTheCareSystem campaign places those issues clearly on the Government 's desk, urging them - two year’s after the Prime Minister’s promise to ‘fix the care system’ - to support those living and affected by dementia once and for all.
For Ann and I, and all of those we have met and are yet to meet through our journey, I am calling for greater recognition of the role which loved ones play in care. We need a simpler system to access financial support, and further integration between the health and social care systems.
More than anything however, I am calling for the Government to recognise the voices of the 135,000 individuals standing up for the rights of people living with and affected by dementia. We must cure the care system now.
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