In February this year I had a phone conversation with a helpline adviser at Alzheimer’s Society. I didn’t make the call lightly; coming to it only after months of frustrating encounters with in-turn-frustrated authorities, duplicated assessments, have-a-go form-filling and a pretty much continuous churn of case workers – all with the vague aim of seeking something like support for our dementia-suffering dad, and Mum, his main carer. Of course there was nothing to say I couldn’t have picked up the phone before all that bother became our family’s norm. I just didn’t think it was the natural flow of things. Truth is, it totally can be. Because what the woman on the helpline gave me was absolute empathy. The empathy of experience and an empathy that was empowering. She sighed at the stories I needed to share – the circular-reference assessments, the bleak humour of would-be helpers walking backwards out of rooms – and after those listening sighs, her preparatory intake of breath and then the ‘okay – here’s what you can do…’
The call gave me the confidence to get to our right person in local social services – someone whom (by sticking at it) I came to feel like I was working with, rather than on, or at experienced worst, against. Equally able to listen, to rest a beat and then, in that tonal equivalent of rolling-up sleeves, ‘Okay…’ A hard-won skill I could now detect because of that helpline adviser.
I trace the turning point in our getting things sorted back to this February call. Brimful with knowledge and the language, the palare, of the system, of the best sequencing of actions and contacts, the call for me was like a reset – a mental de-frag. Okay – here’s what I can do… But first came the empathy.
Of course crap continued to happen along the way – let-downs and rejections and the relentless robbery of the disease – to making progress with Dad’s care. And the doing bits, the sorting stuff, were still tortuous and sometimes traumatic. But a mental strength was in the bag, and in our ear the voice that said it wasn’t just us who were fighting for Dad and the legions like him. Everyone’s need to call, and their needs overall, will be different. I’d made the call to Alzheimer’s Society because I needed to say to someone outside the family and away from the paperwork: seriously, really, what can we do? And I was given empathy that empowered – and I believe changed everything for the heartbreaking better.