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

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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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 …

She Wears It Well

I’ve been incapacitated for the past few weeks owing to an acute deep tissue knee injury and sadly, I’m not the only blogger in recent months to have fallen foul of the curse of the crutch; Marianne over at East of Malaga, Rhonda at Fifty Shades of Gray Hair & Paula have all suffered various incapacitating injuries.

I’d like to be able to tell you that I was injured during some dangerous daring stunt such as abseiling or white water rafting but the truth of the matter is much more mundane that that; I slipped on the wet floor in the little girls’ room at work and managed to wrench my knee whilst performing the splits for the first and (hopefully last) time in my life. Who’d have thought I’d have been that bendy!

So I am currently modelling this slinky little number which is a bit like wearing a cricket batting pad and will probably make me more irresistible to the opposite sex (well those that like cricket anyway). It takes me about twenty minutes of hot sweaty wrestling to fasten all the hooks (a bit like a whalebone corset) and I feel like I need a lie down in a darkened room afterwards. I am still travelling into work every day on crutches via the local bus service, with my bag hanging loosely around my neck. I will admit to a couple of near misses with the automatic doors but I’m now a little wiser and can out-manoeuvre them. The medication has been knocking me out and one morning whilst still semi-conscious I thought I’d overslept so I dashed out to catch the earlier bus and arrived in work for 5.50am where I sat like Billy No Mates until my colleagues arrived at 8.30am

I’m not denying that walking at the moment isn’t somewhat painful and incredibly tiring but a girl’s gotta earn a living. However, as my bestie is about to grant us a royal visit, I’m applying muscle balms & ice packs, knocking back anti-inflammatory medications , and elevating the knee time permitting. And if all else fails there’s always Margaritas.

Have a good week my friends & let’s be careful out there.

Does my bum look big in this?

Does my bum look big in this?

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.

dad & girls 2

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

Sometimes The Most Important Lessons Are Those We Learn The Hard Way

As we celebrated the old fella’s birthday this weekend I can vividly recall the morning, one year ago when my Dad woke up complaining that he’d pulled a muscle in his arm but it was obvious to us all that something was seriously wrong. After a visit to the local doctor’s surgery he was despatched to the bus stop to make the thirty mile roundtrip to the hospital on a very stormy day lashed by gale force winds and torrential rain. When I returned from work I found my Dad soaked right through explaining that he’d had to ask the bus driver to retrieve his bus pass from his pocket as he was unable to and that was the first time of many that I was to cry tears of frustration that year. It’s hard not to when your old Dad who has always been so strong and self-sufficient struggles to even feed himself. Other times you laugh at your own incompetence such as when I accidentally locked him in the house with a lunch of bananas and sausage rolls completely forgetting that he would be unable to open them. I am forever trying to find ways to shave minutes off my day often falling into bed exhausted and I discovered pretty quickly that I’m not superwoman or a juggler so some things have had to change. Inevitably, it’s the things you enjoy doing the most that get sacrificed when you are under pressure.

It’s been a real journey of discovery and I have learned the hard way who my real friends are. Whilst many of my contemporaries are wrapped up in weddings, new houses and new families my life starts at five am when I’m awake for work and the rest revolves around hospital appointments, shopping, cleaning and repeating the whole process again the next day. You no longer have shared interests because you have very different priorities. They struggle to identify with your commitments as a carer and you constantly explain why you can’t just jet off with them on a much-needed holiday. Concerned friends soon stop asking when they realise you can’t fix a stroke with a couple of aspirins. Your hopes and dreams are parked and the life you imagined yourself having fades into the distance; this situation quickly becomes the new normal. Do I ever get resentful? Well of course, I’m only human after all and sometimes it’s hard surrendering your independence for dreary routine. There are no quick fixes here, no magic wands to restore mobility and recovery has been painstakingly slow but this is a marathon not a sprint.

There is help out there for those that are prepared to fight the system or are fortunate enough to have someone who is able to do that for them; for those that don’t no doubt they fall under the radar of our social services and struggle on alone unaided. In addition, gadgets enabling an easier life for those afflicted are ridiculously overpriced again taking advantage of the most vulnerable.

For those finding themselves in a similar situation if I could I’d gently take your hand and assure you that you’re not alone and that there is life after a debilitating family illness. Is it going to be harder than you imagined? Most probably! Will you have some really bleak days? Without a doubt you’ll feel incredibly overwhelmed, bone-tired and isolated but your sense of always finding the funny will get you all through. Will it get better? Definitely. It’ll be a big learning curve for everyone with both uplifting positive and desolate negative moments. You’ll lose friends but you’ll meet better ones worth keeping. For every hard-hearted dismissive jobsworth you encounter you will stumble across people who are like bottled sunshine. The old fella has made tremendous progress but we’ve learned to celebrate the little simple triumphs like seeing him pick up a knife. So why then don’t I just quit my job, buy a ticket and run away to Turkey? Because quite simply, he’s my Dad.

H.O.P.E. = Hold On Pain Ends

H.O.P.E. = Hold On Pain Ends

Not the best picture but this little one-footed fella dodges all the bigger birds every day to sneak a crumb when I’m feeding the rest and he reminds me that you can overcome anything.

For those facing the same struggles as our family if you haven’t already please try contacting the Stroke Association who are just amazing and helped us when no one else would.

Never Let A Stumble Be The End Of Your Journey

Today was a good day in fact, a very good day!

As some of you already know sometime in October my Dad had the first of three strokes and overnight our lives changed radically. Overwhelmed was clearly an understatement to what we felt when my Dad was diagnosed and the full extent of his condition realised. We’ve adapted and adjusted accordingly in some of the most unexpected ways. Lots of things we learned the hard way but always with humour even when I accidentally locked him in the house alone with a packet of sausage rolls, bunch of bananas and bar of chocolate for lunch. Returning from work several hours later to a ravenous father, who owing to his paralysis was unable to open any of the items I had left for him.

I am a pragmatist, which I suppose is my coping mechanism and always feel better when facing a situation head on so I didn’t waste any time in contacting the wonderful society that is the Stroke Association who swiftly put in touch with the appropriate organisations. We met some amazing people along our journey and some not so much but for the generous souls who willingly gave their time and help, I thank you from the bottom of my heart. The outstanding ones will always shine in a drab arena of bureaucracy and jobsworths; and for those that wouldn’t or couldn’t find it in themselves for one kind word or gesture which could have made a world of difference during this dark time, you’ve made us appreciate the ones that have all the more. We are not the first family to be shattered by this news and will no doubt, not be the last but I hope in some small way this gives encouragement to those facing the same arduous battle.

So this morning when he was able to balance a knife in his hand for the first time in months I had to choke back a tear or two. I appreciate that this is only a baby step but in our world its HUGE and I did say that this year I intended to celebrate the small successes. I remain humbled and inspired that my Dad has maintained his good nature throughout the ordeal and never faltered once, however, I’m ashamed to say that I’ve had a few wobbles but frankly, I reckon that if he can stand it then that’s the very least that I can do for him.

The Old Fella

The Old Fella