How the concept of Advocare came into being
It was just after my second son was born in 1980 that I was introduced to the caring scene. To my horror I suspected that my father had Motor Neurone Disease. He had always been such a fit, active man and I'd begun to notice how he was getting progressively weaker. My mother thought he'd had a stroke. Even after the official MND diagnosis two years before my father died there was virtually no support until he became bed-ridden. Not long after this my husband developed a similar rare neurological condition which contributed to his death in 1990. Again no support was available. Soon after my husband died there was yet another shock diagnosis: my mother was found to have Alzheimer’s Disease. I became her full-time carer and sole advocate until she died in January 1997.
One of the greatest frustrations I experienced when caring for a loved-one with a progressive illness was being unable to get the right kind of professional help and services for them at the right time. Often I was too afraid to criticise openly services that were unreliable, inadequate or inappropriate, for fear of backlash or that I would be seen by others to be coping badly. My mother didn’t know she had Alzheimer's and as she became less and less able to communicate her own needs I had to think for her. Knowing how much she dreaded going into a home I lived in fear of letting her down. In those days Alzheimer's Disease was not as well understood and the word 'dementia' generally only whispered.
On the night my mother died I made a pledge to myself to do all I could to improve the care of older people with dementia at home and the lot of their unpaid carers. In the wake of what my mother had suffered and what my young sons and I had endured during her illness I campaigned for person-centred home care. Sufficiently persuaded by my endeavours, Poole Borough Council set up a dementia-dedicated home care service in September 1998 which became a flagship for others to follow. It has now been privatised.
Prof Bob Woods of the University of Wales got to hear about my campaign and invited me to help evaluate a research project he was leading on dementia care which for the first time took into account the caregiver's perspective. This project led to consultation work for the Health Advisory Service, now the Health and Social Care Advisory Service, through which I gained greater insight into the unmet needs of unpaid family caregivers. Full-time unpaid carers can rarely go 'off-duty' and like me, they often felt taken for granted. It began to dawn on me that I had not made heavy weather of my situation as I'd thought: my caring experience had been an absolute nightmare!
My consultation work and later research into carers' experiences convinced me of the need not only for improved practical support for unpaid carers but for greater recognition of their 'invisible' needs which were at that time seldom considered at all. I resolved that, caring appropriately for the carer helped to prevent crisis and the unwanted or premature institutionalisation of vulnerable people. To bring this change about carers needed a free voice: hence the concept of 'Advocare' and 'Caring for Carers' came into being.
Executive Chair of Advocare - Caring for Carers