Tag Archives: dementia

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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Easter Memories

It was an Easter weekend many years ago – when I was aged around nine or ten – that I first went off on a camping and walking expedition with my dad on our own.

We wild camped on Dartmoor, near Princetown, in a two-person, single layer small green tent. I remember how excited I was to be staying out on the moor overnight. I remember how cold it was, temperatures below freezing overnight, a bucket of water left outside forming a layer of ice on the top.

I remember lying in my sleeping bag the next morning, playing noughts and crosses with dad in the dew on the side of the tent.

I remember being tired, walking 25 miles or so in two days – and dad’s advice to put my foot where his had been, literally following his footsteps, and that way we’d keep pace together.

I remember the adventure of it all like it was yesterday, that Easter weekend of 40 plus years ago.

As I remember, like it was yesterday, Easter last year – visiting dad in his care home on the Saturday, giving him an Easter egg and a banana, waving goodbye, not realizing it would be the last time I’d ever see him, not knowing that he would die from a heart attack less than 24 hours later.

I can’t believe that was 12 months ago, that dad has been gone all this time, as life goes on, moves on.

I’ll miss you tomorrow dad, as I do every day. Though you may be gone I still have my memories…so many happy memories.

Supporting BRACE dementia research – so we can all keep remembering.

20140921_150902

One of our last walk’s together – Tipton Following Footsteps Memory Walk September 2014 – with my nephew Huw and my brother Jules.

 

Defying Dementia

Dear Dementia,

It’s World Alzheimer’s Day 2015. I’m writing to tell you how I feel about your impact on my life.

When you arrived again at my door four years ago I was devastated and terrified.

There you stood, cocky, full of your own self-importance, as usual, refusing to leave empty-handed. You’d come, not for me – though you may one day – but for my dad.

How cruel of you. How greedy. You’d already taken both my dear grandmothers, my strong, independent mother-in-law, and a kind, intelligent friend, who in his 80s still had an amazing zest for life. You snatched another friend with your iron grip, when he was in his 50s, a young working father. And there are so many others I know of too.

You crushed them all, stole everything.

So yes I wept when I knew you’d come for my dad. I cried. Dad cried. My mum cried.

I hope it makes you happy our grief. Because there’ve been bucket loads of it, since you picked on us again.

The tears and the torment came in stages.

First was how dad slowly lost touch with his previous full and active life – his confusion over places and people he knew well, his loss of ability, tools unused no longer recognised, his struggle to do even a child’s simple jigsaw, or put on his own seat belt.

Then he was no longer able to interact, have a conversation, be part of his family’s day to day joys and woes. How could he relate to our lives, when he could no longer understand what was happening in his own?

He began wandering distracted, eyes wide-eyed and vacant, at all times of the day and night. He could no longer feed, wash, or dress himself. The every day mundane parts of being human eluded him – sleep, controlling bladder and bowel, spatial awareness, and that precious gift, learned young as a child, speech.

A great talker throughout his life, dad said less and less and then almost nothing. One night I found myself weeping in front of him as he sat there word-less. It was when his own tears began to fall, I realised I had to adjust and accept this loss. To, as the words of Desiderata advise: “Go placidly amid the noise and haste and remember what peace there may be in silence.”

We did adjust mum and I to this new changed dad.

But – oh dementia, you are so cruel – you drained more and more from him, until only 24/7 specialist carers could nurse the wisp of himself he’d become.

Driving him to this new home was the hardest thing I’ve ever done and the worst day of my life.

I felt the deep despair I’d had since a child, when I saw my grandmother die in a nursing home. I felt lost, without hope. I felt that you dementia had won again.

But dad wasn’t giving up without a fight. He wasn’t ready for you to take all of him. There were moments of humour, things he still enjoyed like a walk in the garden, the kindness and care of the staff, moments of tenderness and moments of precious memory: “Land’s End,” he said to one day pointing at a photograph of the famous landmark. They were the only words he spoke that visit – but music to my ears.

Even in the last hours before his death, he defied you dementia – experiencing all his senses.

He ate chocolate, he ate a banana – clearly savouring the taste, smell, textures and the moment of sweetness. He saw his family, looking through a photo album with me silent, but aware. He felt the touch and bond with another human, in a spontaneous hug with one of the staff.

And he spoke too, albeit briefly – but showing his mind was still capable of thinking of adventure: “Where are you off to dad?” I asked as he got up to wander. “Down the town!” he replied. “OK. See you later then,” I said.

It was the last exchange of words between us. He died less than 24 hours later of a heart attack.

So you see dementia, you may have broken his heart – but you never broke his spirit.

And you never stopped him being loved.

One final thing to say before I go. Dad’s death did quell my spirit for a time. It stole my resolve to fight you, defy you – I stopped campaigning, I stopped writing.

I know I can do nothing to stop your cruel invasion of people’s lives. In the time I’ve written this, who knows how many terrible calling cards you’ve left.

But I see so much around me that is good – intelligent, brave, determined people fighting dementia, challenging the grip you have. It gives me hope. It gives me optimism.

Oh yes I still wonder if you might come and find me one day, but I no longer carry the fear of you I learnt as a child.

With my words dementia I defy you and whilst I can, I always will.

Fantastic Fifty – or Crazy Woman

edinburgh edit

Wow! What a weekend.

Reaching 50 marathons three days after my 50th birthday – I’m still on a high.

It’s been an incredible journey of ups and downs – but seeing that finish line at Edinburgh on Sunday was just the most adrenaline-fuelled moment of my life.

I remember rounding the corner at the 26 mile point, hearing the crowd cheering, the course lined with spectators, and realising there was just 0.2 of a mile between me and my dream.

I launched into a spontaneous victory sprint, crying out something like: “50 marathons, I’ve done it!” I literally leapt across the finish line, punching the air. It was simply A FANTASTIC 50!

Emotion got the better of me just after, as I sat and remembered my dad – his own challenging journey during the last three years reflecting mine.

Whilst, I’d persevered in ticking off around one marathon a month, 40 since April 2012, dad had struggled with advancing vascular dementia. I was adding to my mileage and my medals. Dad was losing his ability to speak, eat, sleep and recognise me – let alone, my achievements.

His finish line came 8 weeks before, when his heart gave out before his mind did. He’s been firmly in both of mine ever since.

He was definitely with me in spirit on Sunday. When my legs hurt and a howling headwind was hampering progress, his mantra he used when I was a child and we ran together, still rang in my ears: “It’s only pain, it won’t kill you.”

He’s been right you know. So right. Running can be painful. Hugely at times. But I’ve come through those barriers. Seen off my demons. Running has contributed to making me who I am – a stronger person, less afraid of challenge, determined to take on life and live it to the full.

20150531_093226Meeting my marvellous support team of family and friends shortly after the finish, by the local radio stand and hearing Coldplay Viva La Vida over the loudspeaker, I started dancing and couldn’t stop. It was a wild, carefree jam-jar moment.

I asked John, my husband, later: “Did I look a bit crazy when I was dancing to Coldplay?”

“Yes,” he said. “You did.”

“And what about when I jumped over the finish line.”

“Yeah, you looked crazy then as well”.

“Do you mind being married to a crazy woman?” I asked.

“Not a bit,” he replied with a smile.

Many people told me I was crazy to take on this challenge. It seemed total madness to me as well at times.

This journey has taught me – never let your own fear or other people’s doubts stop you from following your dream.

It may be crazy – but it could be fantastic too.

edinburgh girls finishThanks to so many people for helping me realise my dream – especially my stalwart husband John, my always-positive mum Rosemary and all my family and friends.

To all my running pals, who are so inspiring too, those I run with and those I know online, especially the girls who came with me to Edinburgh – Claire Ashby, Becky Robson, Jane Hemsworth and Helen Palmer, all from Sidmouth Running Club, who did the marathon and Amanda Perry and Julie Payne, who did the half.

Also to other people who’ve supported me, especially from our village community – who with family and friends, have collectively helped to boost my fundraising to nearly £5,000.

Thanks to everyone at BRACE, particularly chief executive Mark Poarch, for their support and for doing terrific work in funding much-needed research into dementia.

20150217_152310And finally of course remembering and dedicating this post to my own inspiration, my dear dad Bernard.

http://www.justgiving.com/Jo-EarlamBRACE

PS: Oh, just realised I forgot to say – I got a second best ever time of 4:14. I was about halfway overall, in the top third of all the women and in the top 20% of my age group. Not too bad for a fun runner!

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

 

 

 

Land’s End

What do you know about Land’s End?

Is it to you that place of natural beauty, the stunning rocky coastline on the South West tip of England where the final grain of solid terra firma dips its toe into the Atlantic and disappears beneath a vast gulf, an ocean?

Or is it the end of communication between you and a loved one with dementia? You standing on the cliff top, secure, firm-footed, with the familiar landmarks of vowels and consonants, sentences, paragraphs. Them wide-eyed, vacant, unable to understand or respond to the mass of information you try to impart, lost without words in a turbulent sea.

So much of life experience is our ability to talk to each other – words of comfort, words of caution, advice, direction, questions, words of love.

Without them, there can be an emptiness, a sense of the deep unknown, the oblivion of silence – adrift in open water, with no familiar landmark to guide by.

It’s been like that with my dad, who’s dementia has brought with it severe dysphasia, leaving him with an almost total inability to speak.

I try constantly to find something that will generate a response, launch some verbal life raft by which I can reach him, or he can reach me.

It’s hard. Really hard. I’m on that cliff edge and I see him beyond the jagged rocks, floundering in the churning waves. I’m calling to him, but my voice is carried away by the wind.

“Dad! Dad! I’m here! I’m trying to rescue you. Look! Look! Swim back to me. You can do it. Dad!”

But he’s fighting so much himself to stay afloat in the turbulent water, that he can’t negotiate a return to the shore he once knew so well. He sees me. He knows me. But he’s in a world beyond mine – a waterworld without words, to my solid rock of speech.

Some days I discover a life raft that does connect us – briefly bridge that gap between land and sea.

On my last visit, it was a photo album I took along, pictures from many years ago when I walked the South West Coast Path.

Dad gazed silently at the images, lingering over some – were they familiar, would he recognise them? Yes? No. Page after page he passed on without expression.

09-03-2015 194328That is until he reached a picture of the iconic stretch of craggy cliffs, with the famous tourist trap signpost that marks Britain’s south west extremity, Land’s End.

It’s a place we’ve visited many times together. The picture was of me sitting by the post. He pointed and simply said: “Land’s End.”

It may not seem much, but those were the first two clear words he’d spoken in weeks.

He’d come out of his sea and was back on the shore. Back with me. My Dad.

It was all too brief, but unforgettable and momentous – rather like a visit to Land’s End itself.

It can be an unfamiliar and sometimes scary experience visiting people with dementia, trying to reach out to them when they’re beyond your shoreline. The obstacles can feel overwhelming, requiring of effort – like climbing craggy cliffs, a terrifying drop below to the raging sea.

But when you go there and just let yourself be there, immerse yourself in that wild, untamed place, the rewards can be great.

Land’s End is not Journey’s End.

 

Footnote: Thanks to my nephew Huw for sorting the web links. A reminder about the MND documentary Filming My Father in Life and Death, which is on Channel 5 11th March at 7pm, which is about my cousin Steve Isaac. MND like dementia strips words away, but there are so many other ways to communicate.

 

 

A bear of very little brain…..

I’ve been sitting here for the last hour or more trying to add a couple of permanent web links to this blog.

I’ve tried every possible combination I can think of in the site admin pages, to no avail.

Huw Bishop (that’s my IT proficient nephew) I need your help!!

You see when it comes to technology, like Winnie the Pooh, I really am a bear of very little brain.

I felt like that last evening as well when I was at the Exeter University research laboratory where BRACE funded lecturer Dr Katie Lunnon was demonstrating some of her incredible cutting-edge work.

WOW! Talk about mind-blowing. Science was my worst subject at school. So the array of whirring machines and the depth of analysis and detail that Katie so eloquently described mostly went over my head. It was rather like the whoosh of a jumbo jet if you were standing underneath – I just couldn’t take it all in, but at the same time, I was aware of something huge, powerful and exciting taking off before me.

Katie was talking at the first get together of what’s hoped will lead to the setting up of a Devon support group for BRACE – something that everyone at the meeting was very enthusiastic about, and all passionate in their own way to do as much as they can to fight dementia.

I’ve just added another string to my bow on that front, having completed the Alzheimer’s Society Dementia Champion training course, which is about raising awareness in a targeted way, encouraging more people to become Dementia Friends and commit to something they can also do to help.

Already one million people have signed up, which is fantastic, and shows how each of us – even in a small way – by working together can help achieve real change.

Last week I also wrote about my cousin Steve Isaac and the documentary Filming My Father in Life and Death. After being posted on social media, the trailer had 30,000 views within two days – incredible. The film will be shown 11th March on Channel 5 in the UK and released internationally via BBC Worldwide.

Here are some links in short form to the topics above……….

http://www.alzheimers-brace.org/

https://www.facebook.com/FilmingMyFather?fref=nf

https://www.dementiafriends.org.uk/

……hopefully with a bit of technical help, by next week I’ll have the full links and images permanently attached to the page.

In the meantime, this bear of very little brain, but usefully strong legs is off to do something it can tackle more easily, like – go for a training run!