A Good Day

So what’s a good day for you? A trip to the spa, beauty salon, picnic with the family or a lie in. For many carers a good day can be one where their loved one isn’t picked up by the police at 3am strolling around the streets or found wandering around the garden naked or perhaps one where they’re not up to their armpits in incontinence pads. Many of you might find humour in these situations, however, for a carer they can frequently be another day of overwhelming black despair leaving them nowhere to turn in a society that’s simply doesn’t understand dementia and habitually fails both the carer and the sufferer.

After my Dad’s accident a good day for me would be one where I didn’t have to jump back in the car after getting home after a day’s work followed by a visit to see him when I would shower him and then drag myself wearily home. As I opened my front door I would often hear the phone ringing because he’d had another fall or was having a bad day and insisting that I collect him immediately.

When you’re a carer there’s no such thing as a sick day or a day off; you could argue that it’s the same for parents but the thing is no one really ever wants to be a carer. This is a role thrust upon many overnight and it’s irrelevant if you don’t want to be one or have no experience in the role; a little like national service. No one prepares them for the coming days, weeks, years of continuous round the clock care of soul destroying drudgery. Days of endless washing, cleaning, bathing, toileting, feeding and frequently getting through the day on pure adrenalin not having slept for days because their charge hasn’t; then getting up the following day to do it all over again. Trust me when I say there are few things worse than severe sleep deprivation and with no light of the end of the tunnel that makes it all the harder to bear on some days.

Let me be clear about dementia there is NO remission or recovery. Those that have nursed a loved one through dementia will know that they don’t fade away gradually in front of your eyes but destructive chunk by chunk on a day by day basis. Often it’s hard to recognise their loved one particularly when they do and say such uncharacteristic and hurtful things frequently becoming increasingly aggressive; I never imagined that I would one day be bathing my once proud and mild mannered father.

Spontaneous drinks after work or lunch with friends become a thing of the past and friends start to fall by the wayside partially through lack of understanding and partly because you no longer have anything in common. Every carer would love the freedom to accept a random invitation but sadly suitable “sitters” for dementia patients are few & far between. However, much as we like to think we live in an informed society; dementia carries a stigma of elderly incontinent folks. The worst thing is most of us will one day be those incontinent old folks.

I don’t mind admitting now that juggling everything whilst trying to be a carer nearly broke me so if you or a loved one are currently fighting the good fight day in and day out, I wish you courage and resolution on your journey. Know that many follow in your footsteps and many have walked that well-worn path before you. Be assured that it’s okay to feel resentful and it’s also okay to vent. Seek help and don’t take no for an answer as I know that it can be a postcode lottery in terms of the support you get but remember too that you need to take care of yourself. Time is the precious currency of carers; it’s worth is beyond gold and you can’t buy it or steal it but for many it is a luxury that is in short supply.

For Next Year I Think I’ll Just Be Happy

Without doubt this has been one of the worst years of my life having lost my much-loved Dad following a devastating year of unbearable terminal illness. It’s hard to believe that his accident was twelve long months’ ago and he went overnight from driving the old folk to the supermarket to not being able to tie his own shoelaces. There have been so many enlightening lessons and although I always thought I was a strong person I clearly didn’t know what strong was until now.  I’ve met some people on this journey that have been like bottled sunshine on a very rainy day and some not so much. Whilst I cannot wait to embrace the New Year and hopefully a new start ultimately I will begin it a little sadder, wiser but a damn sight more fierce than the person I was twelve months ago.

What I’ve learned this year:

Karma does exist so even in your intensely frustrating moments you just have to sit back and let the universe deal with it

Fight for what you believe is right even if it takes every ounce of strength you have and then some

Learn to say no

People can be insensitive, selfish and will disappoint you so just appreciate and be grateful for the kind ones that warm your heart in your darkest of moments.

Don’t hoard beautiful things waiting for that special occasion to use or wear them; that special day is every day in which you are fortunate to walk this earth

Take some time to sit awhile with the elderly and infirmed and let them share their stories; you might just learn something!

Don’t leave words in your heart unspoken waiting for the right time; seize the moment and be bold for there will never be a perfect moment

Did a random act of kindness from a stranger on one of your bleakest days make all the difference? Then pay it forward; the world needs more of that.

Never underestimate the power of touch; hold a hand it may provide comfort to some lost soul facing their own struggles

Celebrate successes, special occasions and life, all with reckless abandon & joy for these will be the golden days you will remember for the rest of your life

Laugh as much as you can and whenever possible

Don’t be too proud to accept help

It’s good to talk so find a friend (two or four-legged) who understands the difficult road you’re walking

When it gets too much let it out and have a good cry, big fat shoulder-heaving noisy tears; you’ll scare the neighbours but you’ll feel lighter in spirit

Don’t side-line the things that make your heart sing because all of us need a tuppence-worth of happiness to add a little light to our troubled hearts

Sometimes you think you may never smile again and maybe you’ve forgotten how to but rest assured somewhere down the road the clouds will fade and the sun will shine for you again

Don’t pretend you’re fine when you’re not; there is no shame in admitting you need someone to help share your burden every now and then.

No one debilitating disease is worse than any other to each victim of Cancer, Alzheimer’s, Motor Neurone, Parkinson’s, Heart Disease, Strokes, they are all equally devastating and crush millions of families the world over. So for those still fighting their own battles have courage & faith, my friends; you got this!

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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.

 

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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 hardest thing is watching somebody you love forget they love you

Dearest Dad

I know you’re scared and if I’m honest I am too and more than a little devastated. As you have always said to me life is seldom fair and you are so right. Your stroke had been a bitter blow for the family but we have been so proud of the way you have dealt with your rehabilitation and will always be grateful to the medical team who have supported you throughout.

It was a truly priceless moment when you were able to sit behind the wheel of the car again for the first time in eighteen months beaming ear to ear with joy from regaining your independence which regrettably would be short-lived. I have been right here alongside you throughout the highs and lows and cheering you on from the side lines. It’s been a big learning curve for all of us and I think I’m a better and more patient person as a result. You have borne this struggle with grace and humility which is something many would have wrestled with. You have fought valiantly against all odds and overcome every challenge so it seems a cruel disappointment to ask you to do that again particularly as there will ultimately be no reprieve or happy ending this time around.

We’ve both known for some time that things just haven’t been right. A bigger and more fearful spectre has crept into our lives whilst we were busy focusing on your rehabilitation one which we both chose to ignore partly through fear and partly ignorance. We all quickly dismissed your forgetfulness as tiredness or a side effect of your medication. Forced smiles and pretence isn’t something that you or I can do very well for any length of time and inevitably we have had to face up to the consequences.

I’ve always thought that you need to roll with the cards you’ve been dealt but I wouldn’t be human if I didn’t feel a little dismayed at having my new-found freedom brought about by your recovery, snatched away quite so soon. As much as we would like to even we can’t beat this malevolent condition.

By the time you read this we will have started the process of tests again and yes there will be changes some good and some less welcome. There will, no doubt, be a few less than sunshine days when we will all rage with frustration but amongst them will be precious moments too. So let’s make these the best days of all filled with our favourites things; picnics, blackberry picking, kite flying and sitting on the porch watching the sky ablaze with lightning during a summer storm. Neither of us can change the future but we can make every cherished moment count.

So for now old fella, whilst this is just another setback along the road it’s a journey you won’t have to walk alone. We will always be able to smell the flowers and there’ll always be more dances but as with everything else in life we need to take this one step at a time just as we’ve always done.

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