ABOVE THE LINE a poem by Kevin Bonfield (part of my dementia inspired collection)
Highlight, in bright pink, the chosen pictures
And trace the words below. Smooth.
Only, what’s this? Something about dates
Dates, what about dates, hang on, dates
I remember them. I think.
It has somehow changed, I wanted the chairs
The ones that turn, yes I definitely yearn
For those turning chairs.
Yet on here, it’s something about dates
Dates? dates? choosing dates. Not DATES!
I didn’t want them. I know.
I’ve highlighted. In bright pink. the chairs.
But it doesn’t say so. Only chairs.
It’s no wonder people explode. More and
More confusion, wanting chairs that turn.
But getting dates. Young people laughing.
But I highlighted it. I think.
Above the line, bright pink, above the line
Above the? Hang on, let me see that.
“You need to highlight below the line”
And yet they keep telling me he’s fine.
I wanted THIS! the chairs that turn!
I know the time. Don’t I?
Learning how to tell a man his pink
Highlights are above the line, not below
That that is why he’s got dates, not chairs
Not belittling, not patronising, not hurrying
Not controlling, not demoralising, but guiding
Take the lead. Highlight his fears.
Well now, brace yourselves for me waxing lyrical about my beautiful lady wife. She does get awfully embarrassed but she is my absolute world and I see no reason not to SHOUT IT FROM THE ROOFTOPS!!!
Nicky gained her Social Work degree and additional postgraduate qualifications relatively late in life, whilst working and bringing up her two lovely daughters. The reward for one of her incredible achievements was a graduation celebration where the enigmatic Mr Akabusi was the guest of honour.
So, a former international athlete, with a fabulous fun attitude to his sport, who has gone on to a lifetime of celebrity and motivational appearances, he is a very active and popular individual and his latest shenanigans can be discovered HERE.
It was a lovely moment when Nicky revealed her Akabusi experience, as he has a special place in my heart. Firstly, as we were growing up in a house of sports fanatics, his athletic prowess and raucous laugh brought many a joyous moment to our world.
His book, On Track, was being devoured by my sister as her illnesses were intensifying towards the end of her life. Unfortunately, she became too ill to finish the book herself. On the night she died, which is 9 years ago on Monday, aged a mere 44, I sat with the book at her bedside as she gently slept a heavy final sleep. I read aloud to her for an hour or two in the hope she was, somewhere inside, enjoying the words of one of her favourite athletes as her breathing slowed.
Reading a little more about Kris in preparation for this blog post he says he is often asked why he openly talks about death and loss so regularly, despite him being an upbeat motivational character. He replied, simply, that it constantly reminds him that every day of our lives is precious and to be lived to the absolute maximum. Also that we should surround ourselves with the people we love and care about, that we trust and with whom we share beliefs and goals. And that we should avoid spending time in situations that suck the life, the emotional energy, the FUN, out of us. I couldn’t agree more….
That he openly talks about oft avoided subjects is so refreshing. When Karen was so very ill (and she lived for over 6 years with her various cancers), people started to avoid those of us who were close to her, the word ‘cancer’ becoming a cancer itself, as if simply using the word would curse us. It wasn’t a secret, Karen had cancer. And it was shit. really shit.
As regular readers know, we live and care for Frank, my father-in-law. He has dementia, his diagnosis is a ‘non-specific Alzheimer’s’ I believe. It is also shit. It also has a depressing prognosis and can completely consume us on occasions. We are starting to find that there’s a little bit of a wide berth being given to us (and not just because of all the hot cross buns we’re eating!) as we try and check ourselves into not having every conversation ending up being about Frank and his bizarre diet, lack of understanding of time or that milk has now become ‘that white stuff’.
Anyway, on the 9th anniversary of Karen’s death, I just wanted to pay tribute to her and the life she had, I owe a lot to her memory and my biggest regret of losing her is that she never got to see me with Nicky. She never saw me REALLY happy and she would be chuffed to know that I truly have found my wonderful soul mate, someone with whom to share the lifetime of love I’ve been saving up.
That a lovely link between these amazing women has been made through Kris Akabusi still makes me smile every time I think about it
I still miss my sister, Karen, she was the life and soul and has left us with so many wonderful, energetic memories. And so, every moment with Nicky, we try and enjoy and treasure the time we have, and intend to keep planning those adventures and challenges and celebrate this life we’ve been given.
So I’d better get my arse out of the door tomorrow morning for that long run and, in the motivational words of my amazing lady wife… “MAN THE **** UP”
The internet eh? Full of people. People you might like. People you might not. People you agree with. People you don’t.
Somehow, by applauding the decision to bring a great sporting event to Torbay, where I live, I was accused of being a Torbay Council stooge and anti free speech. That’s the price of engaging I guess.
The event? It’s the opening round of the 2018 season of The British Cycling Youth Circuit Series. Where young people come together to show their athletic prowess and bike handling skills. Read more HERE. I foolishly responded to the “but the bus route will be diverted” type whining on Facebook!!
Still reeling from Nicky’s injury and its unfortunate timing. I’ll be flying solo in the 2 Oceans and am determined to get that medal for both us.
It’s been a tiring week (I know, change the record!) what with Nicky taken down by the lurgy, my job being rather physical at the end of the week and poor Frank having a bit of trouble understanding day and night, or his television, or the mail…….. There’s no dressing it up, living with dementia is bloody exhausting for EVERYBODY.
So with Nicky battling injury and illness, Frank, poor Frank, and strangers accusing ME of being anti free speech, I thought I’d share my top 10 good things of the week….
Nicky, ever determined, inhibited by her cold, unable to run, the weather stopping cycling, popped into the pool and smashed out the required distance for a half ironman. Twice. Bosh!
My brother, Simon, travelling down from North Wales and taking me down in the Parkrun.
My Saturday long run – a total of 18 miles finishing with the said Parkrun – the 15 mile warm up might have finished off any chance I had of keeping up with him. Check it out HERE.
An old training partner, also Simon, the only person who was too hot on a Baltic day, who pitched up in a onesie.
Another Simon – Simon Ridley from Brixham Harriers, our good mate Jan, and all the amazing volunteers helping us around on such a cold day – what a great thing Parkrun is.
Nicky’s physio, Sam, getting to work in Paignton this morning, despite the very real risk that the snow will inhibit him getting home! He’s worked his hot-cross magic again, complimenting Nicky on her high pain threshold as he physically assaults her!
Snow – well it just looks so lovely (even if it’s quite possibly costing me a day’s money tomorrow!)
Charlie – for wearing a bowler hat, naturally.
Oh yes, today’s long run – 20 miles of biting Easterly gales, snow, ice, mud, mud, mud, hills, mud, steps – Check it out HERE
And writing, and reading, and jigsaws and the piano, our down time, our precious recuperation from the barrage of life…
There was quite an ironic, rewarding, bizarre, unlikely event the other evening.
So for a quick reminder, and a brief introduction to new readers, Nicky (my AMAZING lady wife) and I live with, and care for, Frank, my father-in-law. Frank is suffering with dementia and, as this blog has regularly documented, life for all three of us can be quite exhausting. It can be incredibly challenging and, again for all three of us, unimaginably frustrating.
BUT, there are moments of self depreciatory humour and, like the other night, occasional moments of pure magic.
Nicky and I are both learning to tinkle the ivories (piano!). I’ve had a head start in that I play a bit of guitar, but we’re both thoroughly enjoying the process and sometimes Frank will join us and chill out to the delicately (slowly!) picked out tunes.
Well, Frank, a man who struggles to remember what milk is, regularly mixes up night and day and hides his remote control for the television, suddenly started singing “…hunger for your…” whilst I was chipping away at Unchained Melody.
Astonishing. Astonishing that something I was playing was recognisable. Astonishing that the person to recognise it was Frank. Astonishing that, from somewhere deep within the recesses of his memory, a few of the words to the Righteous Brothers’ classic made their way to his lips.
After a week of bad news, tragic news, desperate stories and more illness in our little world, a truly bright moment enjoyed by the three of us.
We soon got back to losing the remote control and spectacles whilst finding a collection of hidden spoons but that is the world of dementia.
So, a couple of weeks ago, a very jolly chap delivered our piano. It was a particularly jolly occasion. Alan, the jolly chap, banged out a couple of “We’re forever blowing bubbles” & “My old man said follow the van” type tunes before leaving us to wonder at the magic of the thing.
My father-in-law, Frank, suffering as he does from a progressive dementia, was briefly lit up by the music, clapping along and beaming from ear to ear. If you bump into a (jolly) man called Alan, selling pianos, in the South Devon area, please thank him again for us.
“A piano??” I hear you enquire, “but I thought you had no TIME!?” BUT! I retort, this is THE TIME. Ok, neither of us can play the thing! But it has ticked ALL the boxes from our ‘hobby’ conversation of a couple of months ago. Cheap (ish). Accessible. Pick up and put downable. Fun, involves learning and gives ESCAPISM.
Yes, Nicky is absolutely loving the start of her musical journey. Rumour has it that she has been recruited as back up pianist for the recently announced 3 year long farewell tour for Sir Elton John. Better get practising Nicky……..
Frank, then. Nicky’s father, my father-in-law. We moved in with him about 18 months ago, to support and ‘enable’ him. He’s still maintains a little independence, but, to be honest, heartbreakingly he seems to increasingly need a little prod and reminder about the simple tasks of day to day living.
He has been going to the Memory Café, a weekly pop-up support group provided by The Alzheimer’s Society. For a mere pound sterling, he gets two hours with his peers, in a safe, modern-life free, environment. He gets conversation, coffee and cake and activities. Quite often, these activities include a good old sing song. He absolutely loves these.
Sometimes the three of us can laugh at the situations Frank gets himself into. Sometimes, we can get frustrated, sometimes tearful, sometimes almost desperate. Sometimes, Frank is blissfully unaware that he’s in a ‘situation’ at all. The exploding microwave being one of the more dramatic examples this week!
But mostly we get through life, dealing with each day as a new set of challenges and learning ways to better support, not only Frank, but each other. Sometimes well meant comments about how life works for us can be frustrating. It is consuming, and we find ourselves feeling ridiculous as we get irritated by apparently meaningless and momentary incidents, but when these compound over a day, week, month…… a simple thing can be a tipping point.
If we weren’t here, Frank would certainly be in crisis, we feel we give him the safety to continue with as much of his life as he is able, in a slightly independent fashion.
The piano sits in our dining room, and Frank is really happy to have it here. BUT, his attention span dictates that whilst Nicky is trying to learn the whole concept of the piano, music, phrasing etc etc, from scratch, he is prone to either wander off to an aural sanctuary elsewhere in the house, or sit and call out inappropriate encouragement. Whilst working out the EastEnders theme tunes, both Nicky and I were calling out the notes, prompting a much repeated call of “play the F OFF!” from the ever helpful Frank!!
With so many of us living to grander ages, the prevalence of dementia and related illnesses is only going to increase, and we could all take the time to ensure that we consider that the person next to us could be struggling.
I managed a Sunday long(ish) run. After Saturday’s epic (and wet) adventure on the moors (featured in this BLOG) on Saturday, my little legs were aching before I’d finished tying my shoelaces for today’s run. I targeted around 20 miles and hoped those would be at around 8m30s mile pace, on a flattish road route. Whilst I did abandon at 16 miles, I am quite pleased to have ran inside that pace on tired legs. Having to get up in the middle of night to let Frank know it wasn’t time to be microwaving Choco-Hoops and custard (I know!) for a few hours yet prevented us getting anywhere near a night’s sleep. Not ideal preparation. But ’tis what ’tis……..
I had the absolute pleasure of randomly bumping into a very old friend, Steve, on this morning’s run too. I changed my route slightly and accompanied Steve (Smithy) on his run to work. We studied together for our Sports Science Foundation Degrees a few years ago. It was a hard time for me personally and emotionally and it will be great to catch up with him some more.
He was a Torquay Athletic front row stalwart in those days, a family man who has got the running bug these days. It will be nice to share my happier times with someone who really was there for me in those rougher days.
So 2018 marches on.
Nicky and I pick up the baton and charge at another daunting week. Determined to enjoy as much training as possible, wondering if we’ll ever truly get ON IT when it comes to our eating and preparing to deal with another round of jabs from the challenges on life.
I don’t mind repeating myself…. Nicky inspires and drives me and I truly am blessed to have fallen in love with the most amazing woman in the world. It would be so easy to get knocked to the sofa and the soap operas by these jabs, but TOGETHER we push on.
This blog would never have happened if we weren’t the A TEAM. I’m sat here typing whilst Lukas Graham’s 7 Years is given the ebony and ivory treatment by my truly amazing wife.
Whatever you views. About anything. You’ve got to enjoy a bit of Jonathon Pie.
But this will never be a political platform.
First post of the year……. TA DAAAAAAAAAA.
And whatever your views, these ones from last weekend’s running are pretty good.
Actually, it’s taken me so long to write this post, those images are from the PREVIOUS weekend’s running!
Regular readers may well remember me writing about how challenging living with and supporting someone suffering with a progressive dementia can be. It impacts upon everything and, quite frankly, breaks your heart. I wrote THIS BLOG POST where I referred to the challenges of modern life for those suffering with this cruel and debilitating condition.
Well, the remote control headf*** was back this week. After an evening of head scratching and head banging, I came up with the prototype for my dementia friendly remote control.
For a man who spent part of his career repairing aircraft in the Fleet Air Arm, the frustration of knowing that he is struggling to resolve even the simplest of challenges, is horrendous to watch.
He keeps (amazingly) a sharp gallows humour and was absolutely delighted when our new toy was wheeled in and the nice man delivering it gave a quick rendition of “We’re forever blowing bubbles”.
Yes, not content with having conquered marathons, ultra marathons, triathlons, and surviving her crazy job whilst training for MORE ultra marathons and a half iron distance triathlon, Nicky is having a go at learning the piano.
I love this woman and her utterly inspiring determination…….
Actually, if you can find the means to have a few lessons and have a wall to wheel it against, pianos are pretty much being given away. This one came tuned, serviced and delivered for less than the price of a tyre for a Range Rover Sport.
To be fair, so did my ‘beep beep’ Nissan Micra.
A stuttering start for the running year for me. I can’t lie, work has felt physically hard, sleep has felt insufficient, time has felt like as soon as it’s in our hands it’s sliding away again. And my MOJO, slice me in two and call be Bernard, it was last seen shuffling along a remote South Devon beach…..
Actually, I’ve still been out on a couple of fantastic long runs with Nicky and done a speed session or two, so I’m still getting out there.
Just not very often.
It’s creeping back though, the BUG, last week I planned 6 runs and managed 3. Nicky planned 9 sessions (running, swimming, spinning, cycling) and did…. ALL NINE.
Come on Kevin, pull up your mojo pants, big boys socks and zip that man suit right to the top. Time to get back to the thing I love doing…..
Whilst I’m enjoying watching the ‘dots’ battling through the night in the Spine Race, I am humbled and mildly embarrassed by my paltry efforts so far this year…..
Feel free to blame John Bew and Clement Attlee for holding up my book writing progress.
One of the books I devoured on holiday was Citizen Clem. Nicky and I are both avid readers, so a week in the sun with our books was a very welcome rest.
Nicky claims (without any foundation, I hasten to add) that I am prone to being more ‘high brow’ in my book choice. We actually both enjoy being entertained and challenged and are as happy to be lightly titillated by a read as we are to have our beliefs, or realities suspended.
It’s probably true that I’m more likely to pick up a 700 page political biography, but then I suppose I’m the whiny, leftie dreamer amongst us!
I imagine this weighty volume, which kept me in sunglasses for many hours, leaving gorgeous white rings on my weathered face, has become prominent again in recent months after the apparent resurgence in Socialism, and of the Labour movement, as Jeremy Corbyn led his party to savage the hideous majority previously enjoyed by Theresa May.
Truthfully, I’m no great political historian and cannot claim to have been a frustrated Attleeite awaiting a chance to be part of a larger crusade. Aware of his tenure through regular references and opinion columns in the type of newspaper I lean towards, his name was also our dinner table topic a few months ago.
“Who was Prime Minister when the NHS was founded?” Why this question? Nicky and I share a home with Frank, Nicky’s father. As regular readers will know, Frank suffers from dementia and quite often struggles to join in topical conversations over dinner.
Whilst he may struggle, on occasions, to remember the days events, either domestic or from the news, he can quite often hold more detailed conversations when delving into his longer term memory.
With this in mind, we sometimes pick something in the news (like the NHS) and try and relate it to occurrences in the past. We try and have our social time over a meal each evening and this ‘tool’ we’ve developed can often lead to a more inclusive conversation.
Anyway, between us we, I’m ashamed to say, failed to answer with any certainty, until we delved into the magic little google machine. To be fair to Frank, he was only 9 at the time!
I picked the book up at Bristol Airport on the way out, and was initially daunted by it’s weight, page count and small print (and luggage allowance!). BUT, as Nicky will testify, I became quite antisocial as I feasted on the glorious cradle to grave chronicle of one of the truly ‘great’ Britons.
A man who was born in the 19th century, fought in one world war, was deputy leader of the country through another, won an absolute landslide general election victory for Labour and steered the country through the carnage of the post war years, his is a tale to behold.
It is a chronicle told with poise and elegance, an insight into the man as much through what he himself read as much as what he did. Bew’s ability to make such a potentially academic subject so ALIVE is wonderful.
After a few days of slowly cooking myself in the sun, with my head buried deep in the book, I felt I truly knew this gentleman of a statesman. Despite Attlee dying the year I was born, I find him to be the type of political figure who feels me relevant to me.
Having enjoyed (enjoyed!) a 40 mile outing the day before our holiday, I felt I was ready for, firstly, a REST and secondly the Gower 50 which is rapidly approaching…
I managed a few little runs on holiday and a couple of lovely sea swims just to tick over the fitness but with only now a week to go until the big one, I don’t feel I need, nor would I benefit from, any more epic runs.
So, this weekend we’re off to a secret location where I’ll be supporting Nicky as she, yet again, pushes herself to find new skills, new limits, new potential, and most wonderfully, new adventure. Yes, she’s making her debut in………..
Find out next week!
PS I’m a bit shy about this – but I occasionally post poems and scribblings here too –
……. could be you, could be one of your loved ones, could be struggling…
……could have dementia
What right have any of us that are fortunate to have our fully functioning faculties still intact, to huff and puff and give ‘hurry up’ signals to those who might need a little bit more time to digest information given to them.
I witnessed this at a cashpoint today. We’re all in a hurry. Never enough time. BUT, we can all stop, take a step back, stop staring, give others the space they need, the time they need.
An elderly lady, trying to get her money and card back into her purse, still stood in front of the machine kept glancing behind her nervously as the next customer, and his friend, were stood extremely close to her, and were edging in between her and the machine.
As regular readers will know, Nicky and I support Nicky’s dad, Frank, with some of the finer details of life. That said, given the time and space to ensure he has followed his own process and his methodical routines, he remains very independent.
This would include using a cashpoint machine. Wisely, he has taken to using the cashpoint machine within the bank, a far more comfortable and safe environment where he is less likely to be given the unspoken hurry up.
Here’s a thought, and I include myself in this, let’s all assume the customer in front of us needs more time, in the bank, at the checkout, in the café, and take a deep breath and enjoy removing the rush from our lives for a few moments.