Tag Archives: Dementia Awareness Week

Life Awareness Week

I feel caught in a perfect storm of life’s difficult-to-deal-with-moments.

Every seven days it seems there’s a new awareness week for something.

This weekend marks the end of Dying Matters Week and Mental Health Awareness Week and begins the start of Dementia Awareness Week – three topics on which I have a current speciality.

Get me on Mastermind this instant and I’d answer every question. That’s how “aware” I am!

Having lost my wonderful mum less than four weeks ago in sudden, unexpected and traumatic circumstances – yes I’m going through the numbness, the “it can’t be true” questioning, the guilt of feeling in some way to blame, responsible, at fault for not doing more to prevent it, mum having died at my home, in my care.

The knowledge that professional help was sought on several occasions and that paramedics were there when mum died, because I called them, does little to stop me going over the course of events and trying to change them.

I feel physically ill, my body is doing strange things – even down to drastic bleeding from my gums a few days later. I go into physical spasms of grief, screaming aloud in my sleep, sobbing in a supermarket car park. This is not about wiping the tears away with a tissue.

I’ve been totally lost for words, unable to string a coherent reply to a question. Bad dreams, nightmares, getting up in the middle of the night, forgetfulness, I can tick those boxes, that’s if I remember and focus hard enough.

And the flashbacks and intrusive thinking, that’s all part of it.

That side of it, I was pretty accomplished at already. For 25 years I’ve suffered from bouts of depression, including at times self-harming because of the mental agony I’ve felt. My recurring anxiety, spiralling, hamster-wheeling doubt was diagnosed as OCD four years ago, with childhood traumas recognised as being part of the root cause, leading to 20 weeks of intensive therapy.

It helped me a lot, in learning how to deal with it, but it never totally goes away, so yes, I’d say I have a pretty solid awareness of mental health issues.

Dementia, is one of my identified trigger points – the scary demon in my basement. It’s something I’ve been terrified of since a child, when my lovely grandmother’s increasingly eccentric behaviour was put down to being “senile” with very few people at that time bothering to try to understand.

Thankfully, dementia awareness has increased massively since those dark days and there’s been a shift in public consciousness, research and care.

I learnt lots more first hand about this cruel disease, when my dad was diagnosed in 2011 at the age of 70 with vascular dementia, dying just over three years later. It was a journey of mixed emotions, challenges, despair, anger, grief, but also laughter, compassion, enlightenment, and love.

This Dementia Awareness Week remains hugely relevant and important to me – my dear husband John having recently been referred by his GP to the local memory clinic. The appointment is in a few weeks’ time, 20 years to the day that we got married. Happy Anniversary Darling!

It will also be a few days after the biggest event of my life, a women only marathon, which I’ve taken a lead role in organising and aim to take part in.

It’s called Women Can.

I love the positive affirmation of that simple straightforward statement.

The medals arrived yesterday, 450 of them glistening in a box. They made me think about all those women out there, going through their own journey of awareness, issues affecting their lives, but still signing up to our event and taking part, because through running, endurance running in particular, pitting yourself against that challenge, you learn that women can, men can, we all can.

It’s about getting through the tough times yourself and helping others through them also.

About being life aware.

Thanks to all the special people who are life aware, who have been, and are continuing, to be there for me.

*Special thanks to Sue, a counsellor with the bereavement charity Cruse, for her recent clarity and insight and her recommendation to visit the website of the charity Sudden Death – awareness definitely helps! For information about mental health issues go to Mind. For information about dementia research go to BRACE.

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A Happy Release?

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