Duchess of Hamilton
No respecter of persons
As you know, I meet some fabulous people in the course of my work. This week is no exception.
Star of the week goes to Kay, Duchess of Hamilton. It was Jim, host of the Eastcoast FM programme, who put us in touch, as he’d had us both on his show in consecutive programmes, both talking about dementia, and he reckoned we’d get on well together.
So there I was, on the first day of the big thaw, venturing out in the slush and sunshine, to visit this special lady. I was met with a heart-warming welcome, accompanied by fresh scones and coffee served with disarming disclaimers. Instantly the house commands attention. Not for its view, though that’s stunning; not for its pictures and photos, though they tell an impressive story; but more because it’s a dementia-friendly home. The main rooms link in a circle; the colours are strong and contrasting; light floods in even in winter. And indeed, I learn, it was designed around the needs of a man with dementia, he himself having a hand in its choices.
But the unusual design is soon forgotten once Kay starts to tell her story. That story revolves around her husband, Angus, premier peer of Scotland, the 15th Duke of Hamilton. A flight lieutenant with the RAF, a member of the Queen’s Bodyguard for Scotland, a Knight of St John, Hereditary Keeper of the Palace of Holyrood House, bearer of the crown of Scotland in front of the Queen at the opening ceremony of the Scottish Parliament – a staggering list of distinctions and claims. But these things I’ve gleaned from the internet; Kay’s story is of the man, Angus, who developed vascular dementia.
Kay herself is charming, warm, articulate, knowledgeable. A trained nurse. And a duchess. Yet the account of their experiences at the hands of healthcare professionals made harrowing listening. He was sectioned, neglected and treated dismissively. She was excluded, ignored and treated disdainfully. If this can happen to a duke and his family, what hope is there for Joe and Jane Bloggs?
Dementia is a cruel illness that demands sensitivity and understanding. There are wonderful teams of people out there thinking positively, using imaginative ways of giving patients with dementia as rich an experience of life as possible – I’ve written about them in previous blogs. But there are sadly also wards and departments, and health care professionals, with no true awareness of this disease, who treat such families abominably.
Kay is both passionate and eloquent in her defence. People with dementia are real people with feelings and emotions. Confusion has a cause; it needs to be understood in context not crushed with sedatives. Relatives should be seen as allies who know the patient and his/her ways and needs best, not dismissed as an irrelevance or a nuisance, or denied access to their loved one.
It’s only six months since Angus died, and grief is etched in his widow’s face, sometimes trembling in her voice. And yet this resourceful and determined woman is already vigorously campaigning for improved services. She knows all too well that her experience is not unique – countless people have shared similar traumatic stories with her. Like death, dementia is no respecter of persons. She knows too, that the incidence rates are rising frighteningly as the population ages.
She is resolute: she will do all in her power to facilitate a caring and compassionate service for the future. That includes increased awareness and understanding of this distressing illness; a specialist dementia nurse in every health board, improved training for general nurses and doctors. A reduction in the inappropriate use of ‘chemical coshes’; a minimised number of people forced into residential care against the families’ wishes. All aims arising out of deficiencies in the ‘care’ she and her husband suffered. I feel breathless merely cataloguing her goals.
I am in awe of her strength. I share her aims. Her route to raising awareness is through her experience with Angus; mine is through fiction. My own personal and professional experience with dementia has been kinder than hers. But we have both had to stand up against authority and fight for those we love. We know our training and background has empowered us, given us a voice which others may not have at their disposal. And we are both resolved by whatever means, to whatever degree, to make a difference for others too.
I go away humbled and honoured by our morning together, grateful for her generosity of spirit, infected by her zeal. All power to her elbow!