When my dad died last month after more than four years of living with vascular dementia many people in offering condolences said it was: “A happy release”.
By that point dad had almost no ability to speak, no recognition of his family, he wandered in a confused state day and night, with no awareness of his surroundings, could barely feed himself and was doubly incontinent.
He’d been in nursing care for five months – removed from all that had been familiar and dear to him throughout his life and was now surrounded by strangers, some with challenging behaviour, shouting and at times swearing.
By this time dad was passive in his dementia, but previously he’d shown signs of aggression himself, knocking over a carer, refusing to co-operate, becoming so frustrated and angry it left my mum in fear.
For the past three years he’d been unable to recognise the tools he’d used as a carpenter and stonemason all his life, nor scenery or locations that he’d once known well.
Dementia had stolen everything from him bit by bit.
So – a happy release? Yes, it was a sentiment I could relate to and even expressed myself.
But six weeks on – now released ourselves from the worry, the day to day looking after dad, visiting him, doing our best, the acceptance you need to get through each day – now I don’t see it as a happy release at all.
It is a crying shame. An appalling disgrace, that in 2015 still the best comfort society can give to a dementia sufferer and their family is that death will be a happy release.
I know all about the living well bit – we did that as best we could – there are marvellous carers, people who help, and awareness overall of dementia is so much better than it was when my gran developed Alzheimer’s 40 years ago.
But picture the scene where a patient newly diagnosed with dementia asks a doctor to be totally honest about the progress of his condition, what effective treatments there are, what hope of recovery – to be told, there are none. None!
To be told, in fact, that all of what happened to my dad is likely to await, and possibly worse that you might become delirious, hit out at people – those you love and the nurses doing their best to care for you – you might be so confused you end up taking things from shops without realising, brought home by the police, you might be sectioned, restricted by the Mental Health Act, given drugs and sedatives against your will – and that you might on some level in your consciousness know that all of this is happening to you and yet be totally unable to do anything about it.
I speak from direct experience of all of the above examples. And also from the haunted look in my dad’s eyes when I left him in the nursing home that day. He knew. And he knew there was no alternative.
Picture that same doctor’s room now, this time a patient newly diagnosed with cancer being told the same bleak nothingness about hope of recovery or arresting progress of their disease. Imagine if all there was to offer a cancer patient these days, is that death would be a happy release – what a sorry picture that would be.
And what a sorry shame it is for people with dementia.
NB: A final word – in what is Dementia Awareness Week – about this inequality in financial terms. Dementia lags woefully behind all other comparable diseases in the money invested in research funding. For every £10 in health and social care costs attributable to different diseases, cancer receives £1.09 in research funding, heart disease 65p, stroke 20p and dementia just 8p.
This last piece of information is from a blog by the broadcaster and BRACE Ambassador Jonathon Dimbleby, of which you can read more at http://www.alzheimers-brace.org/blog/guest-blogger-jonathan-dimbleby
BRACE are investing money in research. They are trying to find an alternative to death being that happy release. That’s why I’m supporting them http://www.justgiving.com/Jo-EarlamBRACE