The Dementia Taboo

Last year I had a rare night out catching up with some former colleagues over a drink and a bite to eat. Whilst it was great to see them I felt for the main part that they were tiptoeing around me and wondered whether I had a neon tattoo on my head emblazoned with the words “fragile; dementia carer please handle with care”. One of the husbands of the other girls was in remission from cancer and they all expressed concern over his recovery and yet in much the same way as Voldemort is referred to in the famous Harry Potter novels as “he who must not be named” dementia in many social situations becomes the elephant in the room. Now I’m not blaming my friends as I know it’s a difficult subject to broach and frankly some of the behaviours of many dementia sufferers scare the bejesus out of most of us but here’s the thing; it currently effects 850,000 people in the UK alone and by 2025 it will be over a million so chances are everybody at some point will know someone struggling with dementia.

Make no mistake Alzheimer’s is a killer and a destructive force in the lives of many, in much the same way as Motor Neurone, Parkinson’s, Cancer and any other progressive illness. There is no get out of jail card once you have been diagnosed and there is no recovery for this marauding killer that steals your loved ones right in front of you, piece by heartbreaking piece. One of the most bittersweet moments of my struggle was that I did not travel the old fella’s dementia journey alone for my bestie Barbs, was also fighting her own battle with her father who was also diagnosed last year. We’ve laughed & cried together, vented, raged against the injustice we have suffered at the hands of the social care system and shared advice in navigating the treacherous waters of Alzheimer’s but both of us have also sadly discovered that many of our other friends not knowing what to say to us have ended up saying nothing at all. Frankly, are we any less worthy of compassion simply because our loved ones no longer have the mental capacity that they used to. Is it any wonder that so many dementia carers feel isolated and alone?

So can I ask you to do just one thing for me today for all the families lacing up their boots to face another day of battle in their war against dementia; ask them how they are, drop them an email, write them a card, give them a call, offer to meet them for coffee or pop over to their house with a bottle of wine. Granted, Alzheimer’s has some appalling symptoms and causes sufferers to do fairly uncharacteristic things but I promise you, it’s not infectious and you can’t catch it. So go on be a good friend in the life of a dementia carer today after all what’s stopping you?

My wish for you is that you continue to astonish a mean world with your kindness #grandfather #grandad

My wish for you is that you continue to astonish a mean world with your kindness
#grandfather #grandad

You Think You Have Time

My darling daddy has just returned from his final hospital stay; there will be no more. My childhood hero who has fought the hardest bravest battle during the past six months and has been sent home for the last time with an end of life package.

His delight at leaving the hospital is all too evident and all we want is for him to happy, pain free and comfortable. So for the next few days or weeks we’re going to make them the bestest ever, filled with happy memories, no words left unspoken and absolutely no regrets for a joyous life lived.

You’ll forgive me if I’m away a while I’m sure but I want to leave you with these thoughts; buy the damn expensive shoes, leave the housework for a time, walk in the rain, laugh more, be kind, tell them you love them and on a summer’s evening “I hope you dance“.

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The Long Road Home

If there’s one thing that I’ve learned over the past six months people will carelessly break promises and at a time when you need them the most, callously let you down.  Maybe we’ve lived in a cosseted world where my Dad has been our family’s moral compass always leading by example and providing help where he can. So it has been an education for me that neighbours and those we have long considered family friends have fallen by the wayside apart from when they call to enquire what we’ll be doing with his lawnmower, power tools or car.

I’ve discovered that the care the elderly and infirmed receive is a direct reflection of how deep their pockets are and in many cases woefully inadequate or just plain sub-standard. There is no instruction booklet on navigating the stormy waters of the social care system and you better grasp the jargon pretty quickly because not doing so will cost you dear. Having been cut adrift to find my Dad a residential placement we had a crash course on just how difficult this road can be for novices. This journey has been a revelation with moments of sheer despair, frustration, overwhelming hopelessness and countless sleepless nights. We have met less compassionate souls that truly have no business working within sectors where they encounter traumatized families and occasionally individuals that have been like bottled sunshine on a very dark day have crossed our paths.

What advice would I give those forced into a heart breaking journey of their own? I would tell them to use every resource at their disposal and then some. To fight even on the days when you feel you have nothing left and to never give up. We were made to feel that we were “difficult & problematic” for insisting on an acceptable standard of care and on occasion bullied into enduring something which fell way below. There is no doubt that the social care system fails many and for those fortunate to have a family prepared to challenge procedures the outcome can sometimes be very different than for those that don’t. I feel very strongly that the elderly have a right to dignity with care and when you have to deal with a system where policy becomes more important than the welfare of the most vulnerable in society then it’s time you reviewed it.

Nothing is ever just one phone call or just one email and sometimes making, what for others would be a straightforward appointment, takes weeks but more often than not, months. We all know that when you call a service provider it’s a bit of a lottery in terms of who answers the phone so imagine speaking with yet another dismissive jobs worth concerning a loved one’s welfare. Trying to hold down a job and manage my father’s affairs leaves little time for much else; my hair hasn’t been cut since December and I am badly in need of a dental appointment but that has had to wait as there are more pressing things on my ever-increasing agenda. My phone bill is nearly equivalent to the cost of a small car and I can’t remember the last time I have had a night out with friends. There are days when the sheer enormity of the task in hand becomes just a little overwhelming but I have come to realise that sometimes you just have to put down your sword and leave slaying dragons for another day.

So what keeps you going despite the constant rejections and refusals? Without a doubt it’s that smile from your Dad; the one you thought you’d never see again. The smile that says he’s safe at long last surrounded by compassionate people and that the hard fought battle was truly worth it. And so on a sunny day here in Devon you shed a tear and say a silent prayer of thanks knowing that he will now have the best possible care for the remainder of his days which my friends, is truly priceless.

The old fella with two of his favourite carers

The old fella with two of his favourite fabulous carers

Some People Care Too Much, I Think It’s Called Love

At the weekend the old fella was admitted to hospital with pneumonia and we spent a tense couple of days not knowing whether he would pull through but when I rang the hospital ward that morning I knew when the nurse said he was sat up in bed asking for his breakfast that we had turned a corner. So later that day after my shift finished I drove to the hospital to check on him.

As is the case when I visit him of late, he dozes after a couple of minutes of conversation since his stroke so I sit there either reading, drinking or my other favourite occupation of people watching. I couldn’t help but notice an elderly lady sat by the bedside of a disabled man gently holding his hand and stroking his brow; the love and tenderness evident in every caress. This gentleman was unable to talk or control any of his limbs but it was evident that he knew his loved one was close by. A short while later, a nurse came in with a tray and demonstrated how to feed him through a tube. We caught each other’s eye as the elderly lady struggled to handle the feeding tube and smiled at each other in compassionate understanding.

As I got up to go and fetch a coffee from the vending machine as I knew that she wouldn’t want to desert her post, I asked if I could get her one. She fumbled around to find her purse and I assured her I had plenty of change from the car park ticket machine; frankly I was pleased to be able to do such a small thing for her as I have known the loneliness and sadness of a bedside vigil when sometimes just a kind word can make all the difference on a bleak day.

When I returned we started chatting; two strangers united in the responsibility of caring for a sick loved one and she explained to me that she had nursed her son at home for the fifty years of his life but said that sometimes he went to a day centre who were very good with him she assured me. She confided in me that after a fifteen week stay in hospital he would be returning home at the weekend which she said would save her two lengthy bus rides to the hospital each day.

“He’s my world” she said gently stroking his hair back from his forehead. Suddenly my burden no longer seemed all that heavy. This devoted mother’s plight had touched and humbled me in a million different ways.

I left the hospital that day a little lighter in heart feeling grateful knowing that there was still immense love in the world and that goodness does exist if you just know where to look for it.

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Change Is Never Easy; You Fight To Hold On & You Fight To Let Go

Do you remember the scene in “Great Exotic Marigold Hotel” where Judi Dench’s recently widowed character was speaking with her broadband service provider and the call centre representative insisted on speaking only with the account holder? I have lived that scripted conversation with so many utility providers over the past few weeks resulting in endless calls, form filling and emails.There is no flexibility within their scripted conversations which enable them to deal with people struggling with huge emotional loss

This journey has been a big learning curve for me in so many ways I never thought it would be as hard for many different reasons; the heart-breaking handwritten notes that my Dad had left for me amongst his jumpers many still unworn, preferring instead to live in his gardening clothes. insisting that when he’d gone that the local charity shop take his old clothes “but no pick & choosing mind you”. The many clippings torn carelessly from gardening magazines and newspapers to be stored for later use. The pocket diaries where he had meticulously recorded the weather and his gardening schedule every day.

Dementia or Alzheimer’s is a hateful creature which creeps in and suddenly steals your familiar and beloved relative away replacing them with a complete stranger who no longer has the same interests or in some cases preferences. An acquaintance of mine dismissively suggested that caring for an adult with reduced mental capacity is no different from looking after a small child. I disagree with that entirely; an adult has a lifetime of financial responsibilities, cupboards full of memories, and a devastated family who overnight have lost a beloved relative. I have met some amazing people on this journey who have been like bottled sunshine on the rainiest of days but many others not so much.

Having reluctantly spent the weekend sorting through the old man’s treasured possessions which are little more than tatty junk, I have been reduced to tears by the discovery of my first school note-book, his communion medal, my niece’s first crudely written & misspelled love letter. What price can you put on a pocketful of memories precious only to the one who saved them? In a rare moment of clarity when I told my Dad I had found them he said “I know they’re not much but they meant a lot to me though”.

Irrespective of what the future may hold and how many cavalier individuals touch our lives, my old Dad will always be right there with me in the scent of wild garlic and Queen Anne’s lace rustling on a gentle spring breeze, a warm hand in mine on a cold winter’s day, the smell of wet earth after a summer shower but above all he will always be my very first hero.

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A Piece Of Our Hearts Is At Rainbow Bridge

For the past thirteen years my Dad’s constant companion and shadow has been an old border collie called Sonny who was rescued by the old fella when he came across him being thrashed by an impatient farmer for failing to nip the heels of the sheep but clearly no amount of beatings was going to change this poor dog’s submissive behaviour. My Dad being a canny old fella knew there and then that the fate of this young pup lay in his hands as most failed sheepdogs are usually despatched with a bullet from the farmer’s gun so waving his walking stick in the air he approached the farmer saying “Now then fella m’lad, that’ll be enough of that” and promptly took the young dog off the farmer’s hands right there and then without any further argument from the farmer.

My mother was less than impressed when this fairly bedraggled and smelly dog was brought into her pristine kitchen but had become accustomed over the years to my father bringing home various waifs & strays so begrudgingly set about finding something to feed the poor animal. After an overly-enthusiastic bath and groom the bewildered animal settled at my father’s feet, which is more or less where he has been for the past thirteen years. We often joked that Dad probably loved the newly named Sonny more than the old dear. It took some time for Sonny to gain confidence even the cats knew he was a complete pushover and whilst the farmer had not appreciated his kind temperament everyone who met him was charmed. I am always amazed by the good nature of animals in spite of the poor treatment they receive from those that should know better. Sudden movements and loud noises still frightened him and the fact that he never barked were signs of his former abusive life but the old fella loved him dearly.

In fact they were seldom apart, every time I cycled up to the allotment Sonny would be contentedly laying on a blanket in the sunshine watching his master with adoring eyes, who would be toiling amongst his beloved dahlias.

The saddest thing is that as both old boys have fought their health own battles they have been separated when they when both needed each other’s comfort the most. It’s been hard watching them both deteriorate and I’ve come to terms with the fact that the old fella will never be coming home as the brain damage is just too severe for him to cope with the smallest of tasks. I’d also been in denial over Sonny so with a reluctant heavy heart made the decision to help him take the journey to Rainbow Bridge where he passed away in my arms as the person he loved the most on this earth could no longer remember his name.

I truly believe it’s possible to die of a broken heart but I am comforted that Sonny will be waiting just on the other side of the bridge to walk the old fella home when his time comes.

Sleep well bonny lad

Sadly the only pictures I have of Sonny and the old fella have been lost or damaged so I thought they’d both approve if instead I posted a picture of Handsome Benny who Blind Dog Rescue UK are trying to find a UK home for as regrettably his other one fell through. I sure would appreciate it if you could share beautiful Benny’s story so he can find his forever home just like the old fella’s boy.

 

Benny

Just ‘Cos You’re Breathing Doesn’t Mean You’re Alive

I’m tired and fed up; fed up with being brave, fed up with pretending everything is going to be okay and honestly a little resentful at putting my life on hold again. The truth is that despite being in denial for some weeks, my lovely Dad will never be the same again and whilst he’s made a wonderful physical recovery he struggles most days to remember what day of the week it is and what he had for breakfast. Heart-breaking though it is, I have to admit that overnight we have lost my beloved Dad.

This is the post I have dreaded writing the most because by doing so I have to finally admit that my Dad will probably not be coming home and writing those words fills my heart with an unfathomable sadness. I know that my Dad’s no more special than any other dad but to me he’s been the anchor that has steadied our ship and his kindness has enveloped us in an embrace that warmed our hearts just like an old favourite sweater on a winter’s day, reassuring us that there was goodness in the world on even the darkest days.

The surgeon made him aware of the risks when he had his hip operation and we were told that they had a medical dilemma which meant that they couldn’t treat both the stroke & shattered hip simultaneously but he had been adamant that he wanted to pursue the operation. I remember someone telling me that the sooner you treat a stroke the more of the person you save and in my Dad’s case it was to be very little. When the old fella made the decision he was completely coherent, had been driving the “old folk” to the supermarket the day before for the weekly shop, read a broadsheet every day and was able to discuss current affairs almost as well as a foreign correspondent; now he struggles to operate a basic television remote.

The fact of the matter is no amount of sleep, medication or a different environment will alter that now. Our lives have changed dramatically, I go to work and visit him on the way home every day but when he thanks me for coming I realise he doesn’t remember that we had the same conversation the day before and the day before that. There will be no evening telephone calls to discuss our day & bid him goodnight because quite simply he is unable to concentrate on anything for very long. He still kisses my hand when I leave that’s on one of the rare occasions when he hasn’t fallen asleep mid conversation.

We’re not the only family who have been left devastated by the effects of a stroke and no doubt we won’t be the last but at this time and moment I am suffocated by black despair. There’s no quick fix this time around, no magic potion waiting to wake him from this deep slumber and regrettably we are just starting out on this journey of unchartered territory. Some days fragments of my old Dad appear and then just as quickly disappear again. There will be lots of dragons to slay along the road not the least being the callous and faceless bureaucrats with their senseless & often ridiculous form filling.

As he has always told me we never know what’s around the corner, I think I’m all out of wishes and I have frequently wondered during the past few weeks if my Dad really understood the decision he made exchanging physical well-being for mental coherence. I can’t help but feel that sometimes he made a deal with the devil and came up short-changed.

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The Bell Still Rings For All Those Who Truly Believe

Hello friends!

I know it’s been a while but for those that don’t already know my darling Dad had a fall last week whilst the old dear was away on a Turkey & Tinsel weekend with the Women’s Institute. No doubt getting up to go to the little boys’ room without putting the light on he fell and shattered his hip waiting there from 5.30 am until much later when he was discovered. Regrettably, because he had had been sat there for so long his blood pressure dropped and he had another stroke in the ambulance on the way to hospital.

I can’t deny it’s been a tense week with Dad critically ill where he hasn’t known any of us. However, I am delighted to say that we have turned a corner and he’s back on the road to recovery. Whilst it’s a road we’ve taken before it’s one he won’t be walking alone and with Ayesha’s Passing Out Parade in June, I rather think his stubborn determination and heart will have him waltzing along rehabilitation street.

So on Christmas Day we will be heading off to Burrator Ward in Derriford Hospital in Plymouth to bring some festive cheer to the old fella along with a trunk full of Tupperware boxes stuffed with Mum’s homemade seasonal buffet; that’s if he’s no longer a “Nil By Mouth” patient! Beverley Big Pants and I will be traditionally dressed in our Christmas Jumpers and rather splendid earrings bearing a strong resemblance to the the Ugly Sisters, the grande dames of pantomime; oh yes we will!

So I want to take this opportunity to wish all doctors and nurses a safe & happy Christmas and thank them for giving up their family holidays so that we can all still have time with ours.

I think as you grow older your Christmas list gets shorter because the things you want can’t be bought.

Decisions, decisions ...

Decisions, decisions …

Ask Yourself Who You Want To Help Today, Then Put On Your Cape & Do It!

The Flying Fryer, the mobile fish & chip van, has been providing delicious fried foods to our village for the past twenty years long before the arrival of pizza delivery and Chinese takeaway. No Saturday night in could be considered the same without one of their deep-fried treats.

Whilst my mother doesn’t approve of purchasing food bought from a mobile vendor deeming it unhygienic & unsavoury, Dad and I used to sneak out on the nights she was at one of her Women’s Institute meetings for some golden cheesy chips smothered in salt and vinegar and served in the obligatory newspaper. Just for those that don’t know, they most certainly always taste better in newspaper although these days the newspaper has been replaced with a more sanitary wrapping. I usually smuggle them into the house disguised in a supermarket carrier bag so that the neighbours are unable to report our treachery back to my mother.

Harry, who owns the Flying Fryer is a big fella and devoted to his wife Maureen; there is a theory that the longer you are married to someone the more you tend to grow alike & in this case it was irrefutable. They had worked side by side in the small van like a well-oiled machine for as long as I could remember. On the morning in question Dad had strolled up to the local Medical Centre for his weekly appointment with his physiotherapist and bumped into them both in reception. Maureen had broken her wrist and was bemoaning the fact that she wouldn’t be able to help her husband with the lunchtime rush and he wouldn’t be able to cope alone. So naturally unbeknown to us the old fella offered his somewhat limited assistance which was gratefully accepted.

As the afternoon wore on and it started to become dark and numerous phone calls around the village had failed to locate him, I was despatched by Her Maj to ascertain my Dad’s whereabouts. The old dear was convinced he was lying injured in some ditch, I on the other hand, made a beeline for the allotment where I found the dynamic duo of Ernie & Sid, his allotment buddies giggling away tight as ticks laying waste to the last batch of my Dad’s dandelion wine. When I enquired about the whereabouts of my tee-total father they informed me that he was helping out a friend and I’d best check the village car park.

When I eventually tracked him down there he was behind the counter of the Flying Fryer beaming and chatting away with the customers whilst handing out change and taking orders. I stood under the street light watching him for a while. The joy on his face was obvious when he was teasing the children and carefully counting out the cash.

As I strolled over to the van, Harry said “It’s okay Bob, you go on as I think we’re about done for the night. Thanks for your help, you’ve been a right Godsend today. In fact, don’t know what I’d have done without you, mate”

My old Dad’s flushed face lit up like he’d been showered in golden pennies. As we walked home together arm in arm he smiled at me and said “I just wanted to feel useful” and in that moment I realised that our friends and neighbours had given my Dad something which none of his immediate family had been able to: a sense of purpose and for the old fella that had been more precious than treasure.

Back home, not everyone appreciated the local village hero as my mother insisted he sleep in the spare room claiming that she wasn’t sleeping alongside someone who smelt like smoked kippers.

No one is useless in this world who lightens the burden of another – Charles Dickens

Old Mother Hubbard's Cottage (from the nursery rhyme) now a Chinese Takeaway

Old Mother Hubbard’s Cottage (from the nursery rhyme) now a Chinese Takeaway

Save The Last Dance For Me

My Dad’s allotment has been part of our family folklore for as long as I can remember, inherited from my Grandad who had also lovingly tended the plot for his entire lifetime. My Dad would become so immersed in his labour of love that he’d frequently forget the time so as a youngster I used to cycle at breakneck speed down the lane at the back of our house to drop off a packed lunch for my Dad or remind him that it was time for tea. I’d done the journey so many times that I knew every single bump in the road and even now the scent of wild garlic transports me back to those hedgerows covered in Bluebells and Queen Anne’s Lace. Apart from the time I misjudged a pot-hole, tumbled across the handlebars and ended up in casualty; I still have a slight scar across my eyebrow. In recent years it’s been more of a stroll often accompanied by One Speed Hobo, our elderly rescue cat; who enjoys a good excursion.

I’d help the old fella tidy up but not before we’d have a quick waltz amongst his prize-winning flowers bathed in the rosy hues of the setting sun to Nat King Cole or Frank Sinatra which would be blaring out from the old wind up gramophone or more recently a CD player. As a small child we’d do the father and daughter dance where I placed my little feet over the tops of his and he would mark out the steps for me. Then we’d both walk home arm in arm as we had always done, giggling together over some private joke.

During the winters we’d take refuge from a downpour in the shed where we’d lounge in the dusty old armchairs warming ourselves by the small camping stove nursing mugs of hot chocolate in our chilled fingers and in the hot summers we’d have home-made lemonade to quench our thirst. It’s provided us with somewhere to escape from the world and the rain and has been a haven for various wildlife over the years including a feral cat with her kittens and on occasion a traveller during harsher winters. My Dad’s caring endeavours are evident throughout; on the shelves which house his gardening books, the potting bench where he cultivates most of his seedlings and the boxes holding bottles of his home-made Blackberry and Elderflower wines.

It seems however, this golden chapter in our life has now come to an end and it’s time to hand the keys over to someone who’ll nurture our little horticultural paradise as we have done. Since Dad’s stroke we’ve struggled to maintain it but it’s tough watching your much-loved piece of heaven become overgrown and neglected. It’s going to be so hard saying goodbye to such an enchanting place and several lifetimes’ work. You see the thing is, it’s never been just an allotment to us; it’s been a magical kingdom sprinkled in pixie-dust. Somewhere dreams were dreamed and memories made in our fairy-tale castle where dragons were slain by white knights who wore flat caps and made Dandelion wine. I shared my first kiss there, had my first (and last) illicit cigarette and precious encounters with fey wildlife creatures. My journey from childhood into adulthood has been vividly measured there by the coming and going of the seasons; from the planting of the winter flowering bulbs, the shrubs laden with summer fruits to the tender preparation of the dahlias for the village show to re-starting the process all over again for the following year.

Inevitably its going to be harder for the old fella to lock up for the final time but we’ve come to realise that life is a dance which you learn as you go; sometimes you lead and sometimes you just have to follow the music.

For those of you finding yourself in the same situation as my lovely Dad, don’t struggle on alone contact the Stroke Association .

The Old Fella's prize winning dahlias

The Old Fella’s prize winning dahlias