Mark's Blog
A funny, moving, and raw account from Mark, who cares 24/7 for his 18-year-old son. It’s a totally honest view of their world, which we think many carers will be able to relate to, depicting what life is really like.
It shows the true emotions and frustrations many carers go through behind closed doors and the toll this can take on a family and an individual. Out of the exhaustion Mark is able to find humour in the chaos, as his way of dealing with tough times. So sit back, relax and enter Mark’s world …
Blog 1: Far Away, So Close
I’m Mark and I’m the main carer for my son, who is now 18 and has an intellectual disability and Autism.
I wasn’t quite sure how best to introduce myself, so I thought why not start with the highlights from a ‘nice family short break’….
We got away recently.
Well that’s not quite true. We went away, but necessity meant we took with us an awful lot of the crap we would have preferred to have left behind.
We are fans of a type of short break that we shall here call: woodland vacations. We take these otherwise prohibitively pricey short breaks using our son’s care package because, let’s face it, there’s fudge all else to spend it on.
For our king’s ransom we enjoy the use of a timber cabin that is reassuringly robust, single-storey, minimally furnished, and yet well equipped with a couple of bathrooms, TV, streamed movies and even a hot tub. Oh, the joy of a hot outdoor bath being buzzed by blue tits! EVEN IN FEBRUARY! The ambience is outdoorsy and therefore the business model is relaxed about the small, muddy price that kids, dogs, dribbling babies, soft mouthed men etc will exact on the property each visit.
The location, deep in woodland, and with the cabins angled away from each other ensures that you are rarely disturbed or disturb others. There is a shop/café and there are other sporty, climby activities available as extras. Deer peek out at you judgmentally from the cover of ancient trees as you lower your pale as a bleached eel man-stomach into the welcoming warm waters. There are birds, bats, the kind of scurrying things that make you go eek, and the kind of everyday natural splendour that makes you feel meek, calmer – even grateful.
I set a camera trap this time and captured utterly brilliant snapshots of a ghostly doe, a striding grandma, and a dog’s arse! Which I think, technically, makes me Chris Packham doesn’t it?
For us the joy is being able to sit in the hot tub outside and still keep an eye on what laddo is doing in the lounge through the wall of glass (this is usually telly gogging, tableting, and laughing at Dad’s swim shorts). One cabin apparently has a spec specifically for disabled users, with a hoist for the tub.
The biggest problem is that there’s no washing machine. And so, the list of things that we have to take with us on what might otherwise be a short and steamy weekend break away amongst nature in all its fecund glory is long, dull and akin to an ice water dousing.
Pads – one pack of 12
Heavy duty mattress protector – 1
Stick on paper mattress protectors – 5
Non-stick mattress protectors/changing mat stand-in – 4
Baby wipes – 4 packs
Nappy sacks – 12
Pedal bin liners – 12
Quilt protector – 1
Pillow protector – 2
Sheets – 2
Sacrificial quilt covers – 2
Sacrificial pillow covers – 2
Air freshener – 1
Bubble bath – 1
Specific foods – LOTS!
The first hour of every holiday is always spent with me stripping the existing bedding, and replacing it with our own, plus multiple layers of protection between the mattress and the business end of the boy. Basically, we bring our oldest bedding with us so that it can be dumped and destroyed if the worst comes to the worst. But, even with these counter measures in place we still have to get up before our son ensure the cabin doesn’t take on the air of a retirement home for very nervous bovines.
So, despite the hot tub, the drinkies in bikinis, and the wild and woolly embrace of resurgent nature, the situation isn’t always terribly conducive to us being a couple, in the true couply couple sense. If you know what I mean. Despite this we had fun, and chilled and walked and talked, and generally stripped away some of the heavy coat of lockdown worry and privation. And it was good.
Our son greatly enjoyed the high ceilings into which he could throw his feather light ball and damage nothing, and the slippy slidey, non-squeaky floors. He had one of his favourite movies on tap, his every food desire catered for, and there was room for his enormous gym ball. He could kick the merry hell out of twigs on the path, and there were very few people around to take exception. He could muddy himself up, and lob a few lumps of flint around and no-one – not even the judgmental deer – gave it a second thought.
Of course, then my wife gets COVID pinged.
It is more likely that she has picked up myxomatosis from a badger with a limp, but we are responsible people, and so we do the tests. Happily, we’re not infected and the break continues as planned. Still thinking responsibly, I order takeaway pizza at the café and ask if it comes with any salad, the lady makes the kind of grimace that suggests that she and a freshly spritzed butterhead are virtual strangers. But then we are in Norfolk. After his veggie supreme, our son punctuates all the tense, emotional sections of ‘The Kitchen’ with precision placed burps, farts and then violent hiccups.
On our last morning, packing the car ahead of check out, I exchange pleasantries with passing staff members. As I do this I am placing my walking boots on top of my wife’s travel bag. Which is when a deep, resonant and possibly incriminating buzzing begins.
Suddenly the staff members can’t seem to scoot away fast enough, while I, in my blind panic, dive on the wife’s bag, wrench it open and discover that I have actually just accidentally aroused her electric water flosser. This device is still gamely ejaculating the residual water left in its supposedly empty reservoir all over the wife’s high impact sports bra. “It was just THIS!” I call out to the retreating staff members, already suspecting by the rhythmic heaving of their shoulders and their reluctance to engage that the damage is already done, and a judgment has been made.
Then it’s Dad’s pumping playlist, an unexpected detour north (because neither of us were concentrating), and we return home to find T’Other one has not incurred any damage for which we will need to contact our insurance company or bury her in multiple car parks. Huzzah!
Of course, it takes all of fifteen minutes of being home – annoying emails, bills, mountainous laundry pile – for the holiday wellbeing to start being waxed violently from the sensitive bits of our chlorinated skin. But all in all, it was worth it.
There should be more robustly luxurious getaway places for carers and their charges. Or at least facilities where more carers could easily access them. I know a woodland break wouldn’t be the ideal choice for everyone, but a bathing in trees really is a very pleasant experience.
My wife and I were certainly feeling a little more human as we sat down to ‘The Tourist’ and a cuppa that evening.
And then my son lobbed his tablet at my head…
*These are the words of Mark and not Carers in Bedfordshire
Blog 2: A Day In The Life
I thought a good way of summing up what it’s like to be my son’s carer is an account of a typical day in our lives – the day we were meeting The Nice Lady from Carers in Bedfordshire to discuss this blog…
The morning started with me discovering that, overnight, my 18-year-old son had been enjoying a little personal, alone, gentleman-time with himself. This would have been fine and natural but for the fact that he was wearing a pad at the time… and that pad was not clean.
To distract from the visceral horror of this, I put on a podcast. The comedian Richard Herring was asking whether his guest would rather have a hand made of ham, or a nipple that expressed sun tan lotion. At that precise moment this seemed only marginally more ridiculous than the tasks I was currently performing in the service of a young adult’s bottom.
Misery really is an exploded continence pad.
To compound the matter, my son appeared to have cunningly urinated AROUND this pad, AND the multiple layers of paper mattress protectors, to score a direct hit on all the stuff that you really rather wish he hadn’t.
And so, a minor chore became a major one. This would be the fourth morning in a row he had taken out every single item of bedding. It would also be the fourth day in succession that he had taken off his hat when I’d asked him to remove his gloves…. I am beginning to suspect that he may not be Oxbridge material.
After he had been bathed, clothed and breakfasted we sauntered down to town to stock up on the continence products that he was currently burning through. My son doesn’t particularly enjoy this, and so I, calmly, and with the absolute minimum of swearing, explained to him that we wouldn’t have to do it, if he could simply learn to enjoy toileting himself on, you know, a TOILET!
He looked at me as though I had just made an improper suggestion to his mother, which I would never do. Not ever.
Back at home the boy watched the movie ‘Cars’ (I must scream it to the world, my hatred, from the top of someplace very high!) while I fed him lunch and cracked on with more laundry. My son will only watch 3 movies. This is a vast improvement from the three years where he would only watch the one. Every day. If that movie had actually been a language course, then by now Ik zou een hele nieuwe taal vloeiend kunnen spreken.
I decided that we would be eating a simple curry that evening. But, of course, I’d run out of ginger! Obviously, most people could just quickly nip out to the shop… But in my house this would constitute a deviation from my son’s routine and would therefore be VERY BAD INDEED. So I bravely put it off until we were due to meet The Nice Lady From CiB.
Finally, the pixelated yawn that is ‘Cars’ spluttered sentimentally off into the sunset. I sent my son off to the bathroom, which, I later discovered, he had somehow managed to turn into Lake Erie. Calmly, and with the absolute minimum of swearing I explained to him that I’d really rather he didn’t do that again.
Suited and booted and ahead of our meeting with The Nice Lady from CiB, we set out to the shop to hunt for fresh ginger. We were just a few doors down when I spotted that my son had somehow ripped his jeans. From arsehole to ankle
Calmly, and with the absolute minimum of swearing, I explained to my son that I’d really rather he’d informed me of this BEFORE we’d left the house. He gave me the kind of sheepish look that made me fearful there may yet be other, more heinous crimes waiting to be discovered.
Back at the house we determined together that it is VERY difficult to remove tight trousers without first removing our size 8 shoes. But somehow, calmly, and with only a modest amount of swearing we managed to get ourselves together.
The meeting went well. Not for one second did The Nice Lady from CiB appear to suspect that I had a breast pocket bursting with fresh ginger. My son, for once, did not seem aggrieved by this deviation from his usual routine as he could now finish destroying the shoes that he has been methodically kicking apart since I bought them last week.
From time to time I kept his compliance levels maintained with a fruity lollipop. I was a little worried that, were I to be stopped and searched at that precise moment, I may have had a few too many lollipops on me to be considered for ‘personal use’. We were also disconcertingly close to a children’s play park.
By the time we returned home through the treacly winter sunshine, my son had managed to kick his right shoe into the shape of an open-toed sandal. He spent the rest of the afternoon, when I was not looking, surreptitiously turning his socks inside out so that he could pick off the bobbly bits and scatter them all over the living room rug, while I, calmly, and with just a soupcon of swearing, tried to encourage him to stop.
Later, because I must have seemed under occupied, my son decided to deposit handfuls of water onto the kitchen floor. Curiously, he didn’t recognise this as behaviour that was in any way unreasonable. But he DID know how to mop it up by using a towel and his foot as a mop.
Not for the first time I accused him of being an evil genius who was not in any way intellectually impaired, but actually just a colossal d*ck.
Then, much later, Mum engaged our son with a rendition of ‘Head, Shoulders, Knees and Toes,’ which he gleefully parroted as ‘Cheek, Roughly Around the Chin Area, Chest and Thigh’ like a badly dubbed Kung Fu movie.
Then it was just the nightly nuclear detonation of our daughter’s Asperger anxiety. And finally the mean comfort of sleep until…
IT ALL BEGAN AGAAAAAAIIIIIINNNN!!!!.
Am I speaking your language?
*These are the words of Mark and not Carers in Bedfordshire
Blog 3: Fade To Grey
I’ve written this special blog for Dementia Action Week about how dementia has affected my family.
There are lots of great things about getting older. There’s the wisdom, the memories, the wisdom… Did I already mention the wisdom? Oh, and the memories!
But there are downsides. For one the body starts doing odd things. Yesterday I did a snake tongue wee that managed to soak both walls before getting even remotely near the bowl. I’ve begun to sweat in unusual places (Aldi mainly), and my hair hasn’t just migrated south for the winter, but elected to semi-retire there and open a holistic coffee shop.
But, of course, it can be a whole lot worse than that.
I was still at home, steaming up a bedroom with Debbie Harry and Kate Bush posters when my Nan began to go doolally (technical term this, look it up). Nan had always been a bit of an oddity. Sweet and round, and with a tendency to say “Oooooo-oooooo!” a lot, it occurred to me at even a young age that she was perhaps not the sharpest tool in the box. She claimed, as a girl, to have been chased into the Woolly Woods by zeppelins, although no-one was ever quite sure if she actually knew what a zeppelin – or a euphemism – was. She kept the back door open at all times so that if the house was ever struck by lightning, it ‘could get back out.’ And her method of resupplying – put new provisions in one side of the sideboard, and take older items from the other side – meant that I was actually quite mature before I realised that Maltesers weren’t supposed to be chewy.
So, she was a sweet-natured, bumbly bumble bee of a woman who napped a lot, appeared welded into her housecoat, and always seemed to be watching teatime TV shows where grunting gentlemen in pants jumped on top of each other. And then she just appeared to lose any ability to function. Overnight, my Mum was now responsible for all of Nan’s medical appointments, bills, coal deliveries, the purchasing of non-chewy confectionary… Everything.
Mum started pulling rancid bacon out of Nan’s sideboard and finding talc in the fridge. Nan forgot how to bathe herself, and people who came round the house became ‘Those People’ rather than, you know, highly professional health workers . She even began to claim that she’d chatted with Les Dawson, Ena Sharples and Giant Haystacks (that’s a hell of a WhatsApp group!), still sweetish and simple, but somehow spoiling, like a fruit fermenting in the sun.
The real change was to my Mum. She would come home from Nan’s and the stress would have made her hair stand on end, and her eyes wild. Though she was stoic, just occasionally, the tension erupted out of her like a geyser.
Finally, Nan was admitted into a care home, where she spent the rest of her long life, smiling, saying “Ooooo-oooo!” and forgetting you existed the moment you stepped out of her line of sight.
I encountered dementia again a few times at a distance when I was doing community work. And then, it came for my Mother.
When Dad died in his seventies, Mum, typically stoic, just got on with it, embracing a new brace of grandkids and surrendering all her personal freedom to a dog and the war against bindweed. “I miss him every single day duck,” she’d tell me, pinching my cheek with Swarfega cracked fingers.
(I want to reassure you at this point that I am NOT actually any kind of water fowl. It’s a Northern thing. Like friendliness, and chips with curry sauce. Only one of which is a good thing.)
After Dad, Mum’s life got smaller. She was irrationally wary of courgettes, troubled by olives, and when we once brought samosas to a family gathering, she all but recoiled in terror. And the idea of going to a place where you sat and drank coffee and ate cake just for the pleasure of it…. Well, not her thank you very much! She turned down so many invitations that you began to worry that your children were dicks. Which occasionally they were, to be fair. And she was so over focussed on ‘not being a burden,’ that it became, well, burdensome.
It had always been a point of hilarity for us five kids that Mum would go through the entire family – including, daughters and pets (alive or deceased) – before she remembered my name. But now she was almost beginning to list household objects before she got to me. The pool of things she would talk about got smaller and smaller. I noticed how she would avoid using names altogether. If you asked her a question she would avoid answering. She didn’t talk about anything that hadn’t happened either in, or to the house. There are doorstep con-artists who have not said the word ‘guttering’ as much as she did.
At the doctors she would somehow always manage to pull it together. But the periods of greater lucidity, began to be followed by ever more loopy flights of fancy. She would tell me about things that she had ‘watched’ on the radio, or regale me of tales of Dad and her brother at school, even though they’d grown up in different towns.
As is nearly always the case, the siblings who were the nearest took on the bulk of Mum’s care. When I talked to my sister on the phone I could not see her hair stood on end, and her eyes wild, but I could definitely hear it.
It had always been a point of hilarity for us five kids that Mum would go through the entire family – including, daughters and pets (alive or deceased) – before she remembered my name. But now she was almost beginning to list household objects before she got to me. The pool of things she would talk about got smaller and smaller. I noticed how she would avoid using names altogether. If you asked her a question she would avoid answering.
At the doctors she would somehow always manage to pull it together. But the periods of greater lucidity, began to be followed by ever more loopy flights of fancy. She would tell me about things that she had ‘watched’ on the radio, or regale me of tales of Dad and her brother at school, even though they’d grown up in different towns.
As is nearly always the case, the siblings who were the nearest took on the bulk of Mum’s care. When I talked to my sister on the phone I could not see her hair stood on end, and her eyes wild, but I could definitely hear it.
Predictably, the malaise deepened, and Mum began to lose the little strategies with which she’d been trying to convince us she was fine. She replaced subterfuge and sleight of hand with frustration, anger and occasionally a meanness that had never been in her before.
In the end we moved her into a care home by stealth. Within days she hadn’t forgotten that she’d previously lived somewhere else so much as forgotten that this new home hadn’t been hers all along. Peeved by the noisy, nosey strangers who borrowed HER mugs without asking, she hoarded anything left lying around – including, sadly, the other residents’ TEETH – because, after all, if she’d found it in HER home, then it must belong to HER, right?
The dutiful phone calls became a chore. She had become obsessed by something outside in the garden that she couldn’t remember the name of, couldn’t describe, didn’t know why it was there, or who had put it there, and ten minutes of every call would be this same conversation. (It was a kid’s windmill. Whoopee.) She would forget who I was five minutes into the call, or she would instantly want to be away. It was like we were being ghosted by our own Mother. The only meaningful moment – as much as it could be – came at the end of each call when she would say: “I DO love you, you know duck. You DO know that don’t you?”
When I got the call that Mum was dying, I remember feeling: “What? AGAIN?” I’d been mourning her in small ways for a while by then.
I was the last to arrive. She looked like a pile of ash on the bed, grey, cold, and about to be blown away. And then, just as I leaned in to kiss her cheek, her eyes opened, and we all noticed that there was just a fleeting guttering of the flame that had already seemed extinguished. She smiled, as though one final thought had sparked in the stripped and deserted department store of her brain before fading down back into the dark: “Oh look! It’s our Sandy! Er, no… Rex! Kizzy..? Jock! Bunty..?”
Thanks Mum!
*These are the words of Mark and not Carers in Bedfordshire
Blog 4: It's (Not) Raining Men
This is what it’s like for most blokes in any ‘parent and child group’, although most of them are labelled ‘mother and baby’ for the reasons below …
“I think this one’s going to be a chuffing pole dancer,” groaned the very pregnant lady on the seat next to mine.
“What, like your husband?” I wish I’d said. She would have probably thought that was really funny. Probably.
Her unborn baby had just executed a perfect 10.0 front swing with half turn to dismount on top of the lady’s bladder. To say she looked uncomfortable would have been an understatement akin to describing Claudia Winkleman as ‘gently sun kissed’. She had told me that she was already the mother of a child with special needs, and you could clearly detect the tension in her eyes as she contemplated the possible arrival of another.
It was the mid 2000s, and we were at some special needs something or other. We were probably complaining, or bemoaning. I feel like the carer community does a lot of bemoaning. We’re pretty good at it. As usual the room was full of women. Some of them were blinking at me, the only man, a bit confused, a tad distrustful. You could feel them thinking: “Why are you here? Men don’t care, do they?”
“HE can’t deal with any of this stuff,” said the pregnant lady, leaning heavily on the word ‘he’ in a way that suggested she felt she might not feel so free to do with her partner.
I remember thinking at the time that this was the exact opposite of what any man that I knew would ever want to be said about them in their absence.
But I could also totally understand why her partner wasn’t there at that moment. Emotionally, it’s a lot easier.
Of course, there is the very real difficulty of asking managers for time off work to attend these things – although it is your legal right to do so. Or the pure unadulterated arse ache of scheduling intractable health appointments against childcare or professional commitments.
But, to be honest, that’s something that can usually get sorted out with a little effort and, more importantly, the will. You see I think the real reason men don’t attend a lot of these meetings has nothing to do with work or childcare, and has an awful lot to do with them fearing becoming ‘emotionally incontinent’ in a public setting.
We’re not used to it you see. Men emerge from the womb fully cognisant that a fart is a very funny thing, and that pretty much any activity worth doing will be seriously improved by us being put in charge of it. But the whole emotional intelligence thing….
Women are experienced in giving over to their feelings. These days, there are entire TV channels seemingly devoted to cajoling otherwise intelligent, capable, and robust women into crying buckets over the failure of their buttercream icing, or the fate of mutton-chopped ancestors.
Traditionally, men have two acceptable factory settings for public displays of emotion: stoic and… oh no, actually, there’s just the one.
We just don’t like to do public feels. We prefer the emotionally neutral environment of ‘Dave’, and the (not at all homoerotic apparently) companionship of fat men cheering on impossibly fit young foreign men in tight shorts from draughty terraces. Occasionally we might become quietly choked at the end of movies where pets die, or men do ‘the right thing’ at great personal cost. We have heard how eviscerating and poignant that scene in the Pixar movie ‘Up’ is, and that’s why we are never going to watch it. Not ever.
A similar thing happens when any first child is born. Mums begin to question, at first gently (and then really not very gently at all) just exactly why the washing up needs to be done, the lawn needs to be mowed, or the dog needs its oil changing at that exact time of day when the children are awake and at their most demanding?
The simple answer is a lot of men feel hopelessly unequipped for the task of surrendering to their own tenderness. Most do realise that they absolutely, definitely need to contribute. So they revert to ‘man tasks’ rather than just spending some quiet time letting their wife snore gently against their shoulder while they pull faces at a delighted child, or attend necessary, often difficult bemoaning sessions with care professionals.
It has always struck me as odd that a man will put an undue amount of effort into trying to urinate higher up a wall than his bezzie mate, will tear a muscle trying to outdo the young lad at the gym, boast about his golf handicap, and be upsettingly proud of his ability to carbonise previously edible meat products on a barbecue grill… But be curiously uncompetitive about how much time he’s spending with his own children.
I mean when was the last time you overheard a conversation between two men that went along these lines?
Gav: “Cor larst night! Bouncing ‘im on me knee, got three smiles, two giggles and a fart. Bish, bash, bosh! Result!”
Ganymede: “That’s nothing old chap! La dernier nuit, j’ai executé un full nappy change avec beaucoup de crap, AND she peed in my eye. Then bath, breast, burp, ‘Slinky Malinky’ and bed. Bichon, Bosche, Bose. Sweet as a macadamia!”
Makes one wonder sometimes if male pride in any activity always requires the presence of floodlights, pies, and sulky foreign blokes in tight shorts?
The odd thing is that on those few occasions when I’m not the only gonad juggler in the room, the meetings are better. Turns out there’s a reason why we have men and women in the world – sometimes we need both skillsets to get even the most basic tasks done. When partners are together in the room, they exchange glances, smile, joke, share. When they’re not … well sometimes the empathy can smother the energy.
These days very few of us need to fight off killer sharks, angry Impies, or devilish Nazis. But many more of us are having to fight for basic rights in the protection and nurture of the people we care for.
So come on guys, be a man about it. Turn up, care. But, just for the record, I’m doing a much better job of it than you are. LOOOOS-ER!!!!!
*These are the words of Mark and not Carers in Bedfordshire
Blog 5: Happy
“Are you hippy?” asked the heavily accented voice on the phone.
“Um, is er Mark there?” My girlfriend answered, a little thrown by this unexpected voice on the flat share phone.
There followed a long pause. Then…
“Are you hippy?”
My girlfriend hung up. It was probably the wisest strategy in the circumstances.
The voice on the other end of the phone had belonged to Patrique – a French Lebanese Commis Chef who sang happy little ditties as he cooked, and seemed to subsist on meat with a side order of meat in a meat dressing served with a splash of meat and offal jus. This he would wash this down with coffee so sweet and so strong that you could have put William Shatner into space on it. Without the rocket.
“Are you hippy?” was Patrique’s one and only fragment of English, and he generally used it sparingly. So why on earth he had chosen to pick up the phone that day still defeats me. Unless it was to torture some hapless call centre sales droid. But it always struck me as funny, and actually quite charming that this was the one slither of English that he’d chosen to commit to heart.
People are obsessed with the idea of happiness. Entire industries exist to create, expand, or surpass your own experience of it. You cannot do an online grocery shop these days without three or four pop-up questionnaires interrupting, desperate to know how happy you are with the experience so far, which ironically makes me VERY, VERY UNHAPPY if it causes me to forget something. But then I am the forgetful sort. I think.
It is looked upon as being the social ideal to present as happy. We are expected to display that stiff upper lip or Dunkirk spirit even if our leg is hanging on by a thread, we’ve discovered our hire car is French, or we have been designated the long-haul aircraft seat beside Katie Hopkins. In my experience some carers are very adept at this, often to their own detriment, while others are far too exhausted to even try.
Meanwhile, as evidenced by the not very multiple-choice performance rating questionnaires that we are encouraged to fill out, agencies subtly pressure carers to present as happy. And they do this often, it seems, so that they can then go on to ignore some of our most pressing and paralysing needs.
But I may be cynical about that.
The thing is, if a carer and their family are perceived as or represented as appearing ‘happy’, then they’re assumed to be coping. But this, as we well know, is not always the case.
It’s about perceptions innit! They’re a funny thing perceptions. Non-musicians seem to have this romantic perception that the great songwriters would perch themselves on silk cushions in a Shepherds Bush ashram and compose a song thusly: “Bravo Saul, that intricate exploration of the F as it transitions between Em7, A7 through Dm eloquently evokes the timeless struggle between the cosmic yin and the yang, inspiring fresh appreciation of the interplay between the Scouse and the non-Scouse in the sectarian metaverse of the soul.”
When in reality it goes something like this: “God, Bongo I love that! Hit it again! FASTER! WITH YOUR HEAD! Oh… Anyone got a spare battery? Buuuuurrrp!”
Personally, I love it when an over thinky book club member insists to an author that their latest work is a deeply personal investigation of the factures inherent in the interplay between modern forms of blahdiddlybooblah, and the writer replies: “No, it’s about dogs. I like dogs. Dog go woof.”
That’s the thing about perceptions. If you don’t slap them down, and hard, then people just go with them, because they’re cosy, comforting, self-aggrandising, and – most of all – don’t require the expenditure of any significant thought, effort or resources.
It makes me genuinely seethe when I see an opportunist politician mussing up the hair of a single charming disabled person for something that they’ve done, praising their resilience and inspirational qualities. What I, as a carer, want to know is why these ballot bimbos never get challenged on how Mum feels about disability services being cut? Is Dad ecstatic at the thought of his vulnerable child being cared for in the future by underpaid, under trained, unsupervised agency workers? How are the other kids coping with the vicious cruelty of their teenage peers or the existential guilt that they can’t access a counsellor to talk about?
Sod the Public Relations massage, what’s the FULL story ballot boy?!
I know that we, as a family, are pretty well-off in the happiness stakes. We’re a tight unit, focussed. Together. But that has been hard won, occasionally eviscerating, and has required a lot of soul searching and compromise.
But being any kind of carer in Britain in the 21st century is NOT anybody’s idea of happiness.
Our care system is like an IKEA wardrobe, that arrived with all the wrong parts, and an instruction manual in Mandarin, and was put together by monkeys. In the dark. It tries hard, but it tries from a brazil nut balanced on top of an egg shell foundation. And so, every time we, as carers, are pressured to smile on the outside, even as we die a little on the inside, we do a disservice to ourselves and others in our position. We give the false perception that we’re okay with the constant degradation of our services, living standards and life expectations. We give the perception that we think it is acceptable for the rest of society to simply view us as the unlucky ones, and feel good about throwing a little change in a begging bucket once in a while.
And we give carte blanch to a deeply flawed and politicised health and care system to go totally goldfish on us as soon as the new re-election cycle begins.
I met someone who works in a Government ministry recently. He described a recent Cabinet Minister whose modus operandi appeared to be to start a variety of ‘innovative’ or simply logistically batshit initiatives that grabbed headlines as they were announced, but which could only realistically come to fruition ten years down the line. The ambitious minister would typically have moved on from that department within a year, and those initiatives would then quietly be cancelled by the next incumbent. Imagine if you ran your own household like that! There will definitely be sausages for tea! What sausages? There are no sausages! I never said there would be sausages? What’s a sausage???
So, next time you receive a tick box survey on whether you are ‘hippy’, cross out the boxes, get a pen, and let them know, politely but firmly and in unsparing detail. My kids have always been a kiss upon my consciousness (when not smelling of strawberries and Marmite). But, let’s be honest, this situation in which we unexpectedly find ourselves, even with all that we’ve learned, often sucks to high heaven. Tell it how it is. To anyone who will listen.
Now, would you like a little bit of extra meat with that..?
*These are the words of Mark and not Carers in Bedfordshire
Blog 6: Doctor! Doctor!
I’m going back a few years now remembering those early visits to the doctors with my son and wondering how any of us came out alive …
“Mmm I’d be VERY careful doing that,” I said, suddenly on the edge of my seat.
“That’s quite alright,” said the new locum GP, not a little brusquely, “I know what I’m doing.”
And so, with that, I settled back in my seat and watched with interest as the doctor raised a scary looking ophthalmoscope to my son’s eye with the intention of examining his odd squint. “I think we understand each other perfectly, don’t we young ma…” the intensely educated medical professional continued confidently, and might have actually finished had my six-year-old not, at that precise moment, violently punched the pointy looking device into his eye.
I love doctors! Some of my best friends are doctors! That’s not actually true, although I do admire their innate sense of rhythm and their colourful way of dressing. I mean, what’s not to like about someone who, at a moment’s notice, will WILLINGLY slide two lubricated fingers up your bum without you needing to first buy them dinner?
Seriously, most of them are great. And, to paraphrase an old Ben Elton gag, you try getting help from an unpaid, internet blogger next time you need your anal glands squeezing! (That is a thing isn’t it??? I’m sure it’s a thing.)
But – unless they are already carers themselves – it’s possible that your GP probably won’t have a clue about the stresses and strains that you’re dealing with on a day to day basis.
And their receptionist, even less so.
For the first six years of his life, my son rarely slept for longer than half an hour at a time. It was brutal – especially since our two-year old had also been a terrible sleeper. We didn’t cope so much as survived in a semi-gelatinous state. With the lack of sleep came a variety of petty and not so petty ailments. I remember my GP – one of a long list of fly-by-nights – concluding that it was probably the chronic lack of sleep that was affecting my metabolism so dramatically. “What I do when MY sleep is being disturbed,” he said sagely, “is move to the furthest bedroom away from the person who is disturbing me.”
Even in my devastated state I remember thinking that this was perhaps really useful advice for anyone who lived in the kind of mansion that a senior GP couple with their ferocious annual salary could afford. But not so much for an unemployed word tickler, trapped by circumstance in an Edwardian workers’ cottage. Still, at least the sage advice was free – unlike the prescription.
Despite his other issues, my son is as strong as an ox and has the metabolic constitution of a goat (and occasionally the perfume of a rotting donkey). This has, thankfully, resulted in very few journeys to the doctors. There was one occasion early on, however, when a cut on his leg had somehow become infected, and had laid him dramatically low (back then if he wasn’t a blur of meaningless destruction, you knew he was ill). I had phoned for a doctor’s appointment, and had stressed that, for the good of everyone else in the surgery that day, it would be preferable if my son was not kept waiting any longer than was necessary.
The receptionist sighed, muttered something, and then informed me, in a stern, some might say sour manner that my son would have to wait his turn like everyone else. Oh no, I understood that, I reasoned, we’re not looking for preferential treatment, it’s just that I’ll arrive a few minutes ahead of the appointment time, and if, come the passing of that appointment time, we are not in the doctor’s warm embrace, then I couldn’t entirely guarantee that anyone else in the building would make it out alive.
He will wait his turn, she reiterated. Not a little unkindly.
Receptionists quite reasonably develop an impenetrable armour at some point during their career. I understand that often they’re dealing with rough sorts, using rough language to describe how rough they are feeling, and afterwards that the receptionist might feel that they had been a little roughly treated themselves. Welcome to the world of caring.
I saw a similar armour in the face of an experienced policeman who tried to arrest me for refusing to return a girlfriend’s car keys, which I had taken. This girlfriend had been determined to drive from London to Brighton. And I had just seen her neck an entire bottle and a half of Smirnoff in three gulps.
They won’t be TOLD that sort. They have to SEE.
Predictably, on the day, the appointments overran. I reiterated my concerns to the receptionist, but was firmly rebuffed. Seeking some breakthrough in this impasse I offered a compromise. “How about I keep him outside, gently murdering the shrubbery, and you come find me when it’s our time to go in?” I ventured.
It was made clear to me in the arching of her drawn-on brow and the disparaging twist of her mouth that this was definitely NOT going to happen. And so, defeated, I meekly led my son to a seat in the waiting room.
Where for the next forty minutes, my son screamed blue murder. I tried. I really tried. But I doubt that the wellbeing and recovery of any of the dozen or so other inpatients in that waiting room that day was in anyway aided by the carnage that swallowed those long, loooooong moments. If the screaming wasn’t enough, then the attempts to claw his way through me, and destroy every item of furniture in the room was probably the very unpleasant icing on the poo cake.
By the time we at last got to see our doctor, the human beings in that waiting room were shells. Pale, wan ghosts of what they had once been. Though it was abundantly clear, from the receptionist’s expression, that she considered it was MY bad parenting that was to blame.
And it would have all been so easy to avoid. Medical records that clearly state, AT THE TOP – the only bit anyone ever seems to read – that I am his CARER, and I know him, and that I should be listened to. Please.
It is one of life’s little ironies that emails arrive from medical and care professionals demanding precisely how they expect to be addressed these days, and yet, despite having full access to his records, they are still requesting to have a detailed telephone conversation with an intellectually impaired, non-verbal young man.
So, physician heal thyself, and thy shirty gate keepers, as a renowned northern wise person probably once said. Reach out to carers’ charities and hear from the horse’s mouth exactly how you can make the experience of a GP visit better for them, their charges, and therefore all your patients and staff.
In cooperation we’ll find a cure.
*Only a few medical personnel were injured in the making of this blog!
*These are the words of Mark and not Carers in Bedfordshire
Blog 7: Erase & Rewind
A lady just laughed at me.
I’m not unused to this. I am, after all a man, a brother, a son, a husband, and a father of a daughter, so light derision with a side order of withering contempt is sort of the soundtrack to my life.
Occasionally I even manage to make women laugh on purpose.
I still earn a princely 15p every year or so from my 1 minute and 5 seconds contribution of sketch material to the double Emmy award winning TV series ‘Smack the Pony’. That was two sketches that actually got broadcast, and one that didn’t because the fake head that detached during vigorous lady stimulation didn’t look convincing enough in the edit. Even more occasionally, when the show gets translated into some even more exotic language than previously, I earn enough to buy an entire meal deal for one at M&S! If we still had an M&S…
But, today, this lady was not laughing at me for the simple error of owning an X and a Y chromosome or for anything wise, witty and monetizable that I had written. She was laughing at me because my trousers were having a swearing fit.
There was a time when if you saw someone walking down the street in ripped clothes, mad hair, a wild expression in their eyes and muttering to themselves that they had probably just missed some medication or had escaped from a community care centre. These days its far more likely to actually be the carer, probably on their second intravenous drip of Berocca laced grande mocha, and murmuring along to positive affirmations on Bluetooth earbuds.
(I had to check the spelling of Berocca on line, and, with one erroneous vowel, accidentally landed on a ‘Busty Bombshell’ who is also slightly orange, effervescent and might well give you back your b-b-b bounce. That’s my excuse anyway. But I digress…)
In this case I had been taking something to the recycling bin outside and hadn’t wanted to pause the Richard Herring podcast I was listening to on the phone. So, I simply slipped it into my pocket and carried on. The lady had just drawn level with me on the pavement when my trousers appeared to unleash a loud, shouty and physically improbable tirade of abuse.
The lady luckily clocked what was going on, laughed and walked on by. No harm done. It’s entirely possible in this great technological age of ours that she has been shouted at by an angry pair of trousers before. I think it unlikely I will end up on any kind of register any time soon, but these are the kind of pickles that modern technology seems determined to get us into.
My wife, for example, can no longer indulge in secretive and clearly unhealthy fantasy clothes shopping after an episode of ‘The Amazing Mrs Maisel’ because our networked computer and tablets constantly dob her in. There I will be, attempting to make sense of an online recipe for cheese and toffee apple roulade when an advert will pop up suggesting that if I l enjoyed the pleat and lace padded plunge bra, then I’m going to absolutely ADORE the matching low-rise thong. (They’re right of course, but I favour a plush, lemon, kidney coddler while I’m working.)
Never before have secrets been quite so public, and technology so needy. Yesterday Facebutt pinged to remind me that I’d been on holiday recently. I KNOW! It was a week ago! I hadn’t forgotten Mr Zuckerberk! Remind me what that girl’s name was back at college if you want to be really useful! The one with the thing and the doodahs. Also, if you could remind me what the doodahs were, that would be nice.
Of course, my constantly beckoning, prodding and poking machines might just be concerned, now I’m in my late fifties, that Alzheimer’s or dementia might be setting in. It’s possible. It was the worst double act in entertainment history that ganged up on my Mother after all.
But it’s a more present infirmity that’s been bothering me lately. One of the unfortunate side-effects of working to a deadline again after so long has been that the typing has aggravated an old carpal tunnel injury. Attempting to work around this, I utilised the dictation speech to text facility on my American designed, Chinese built computer.
Only it’s a bit sh*t. When the machine had wilfully misheard and misspelt the word ‘window’ for the fourth consecutive time, I unleashed a fast and furious volley of swearing at it… which it accurately and faithfully reproduced without error or judgement.
So, there you are. Angry British tourists had it right all the time. If the dozy foreigner doesn’t understand what you’re saying, just shout and swear at it until it does. Progress huh?
Our son, not on our behalf, but purely under his own steam seems to be taking the fight back to the machines by routinely torturing tablets to death. He doesn’t do this in the expected way, by breaking their screens – though he has done that. Instead my son plays with their heads. He does this by fanatically opening and closing apps and downloading the entire internet until their puny brains are close to bursting, and they can barely function enough to open a flopsy bunny cartoon, and dribble unpleasantly throughout the process.
When the tablet has been tortured into such a state of stupidity that it can no longer remember if it is switched on or not, I reset it to its factory settings. The tablet bounces back, energetic, sprightly, enthusiastic and with no idea of the fresh horror that my son is about to unleash upon it. These days I can turn around the whole wipe and reboot ’healing’ in around ten minutes. And I always feel a little bit like a monster as I do. As though I’ve purged its personality – broken and confused as it might have been.
But at the same time, wouldn’t it be kind of cool if you could just forget all the bad stuff that clutters up your brain and start all over again?
I struggled with mental health issues for a long time after my son was diagnosed. And I watched my mum being inexorably consumed by Alzheimer’s over a period of years. I remember how she became obsessed with putting her precious things – the rustic Polish egg cosy, and that plastic blue donkey I bought her in Weymouth – out of sight of the thirty-foot tall burglars who might have been able to see them while passing by our elevated front window. She even moved the mirror to prevent these priceless treasures being glimpsed in reflection from a passing bus.
Tiny little glimpses of my mother as she must have been as a child began to pop up, and I remember thinking it would have been so tempting if you could have just wiped her head clean and started again.
But for now, that’s off the table, and technology is all about swearing pockets, spilled secrets and dodgy selfies.
Still a ways to go then…
*These are the words of Mark and not Carers in Bedfordshire
Blog 8: I Predict A Riot
The most predictable thing in the world is that the world will do something unpredictable. An underwater volcano, a careless sneeze in Wuhan – all stuff that we didn’t really see coming.
Except that we kind of did. Sh*t happens, right?
I learned this back in the 1990s, when I was a magazine editor. The phrase that dominated production was: “If a disaster can happen, it WILL happen.” Contributors getting sick, photo files corrupting, issues going to print with Latin filler text or house prices printed in dollars. Facts or phone numbers being changed overnight. I remember once my mistyping of ‘off-street parking’ manifested itself in print as ‘off-street arachnid’ – and that’s some scary kind of spider!
One issue, I had been approached by a freelance news journalist fallen on hard times, and, feeling benevolent, commissioned him to write a piece for me. The false deadline I’d given approached, and I had heard nothing from him. He was one of those expensively educated types who talked a good game, but whom you suspected couldn’t actually find a fart in a farmyard. So when the actual deadline passed without any sign of this writer’s piece, I reached for my shoe-sized dumbphone and put in the call.
“Hello?” he shouted, the line crackly, peppered with odd whooshing and crackling sounds. Occasionally he sounded like a posh Metal Mickey. “Bidét, bidét, bidét.”
“You owe me a piece..?” I prompted, hoping he was going to tell me it was already in the ether.
“Ah yes, about thaaaat,” he drawled, my heart sinking. “Thing is, something started kicking off over here and so I got deployed to cover it.”
Deployed? “Where exactly is HERE?” I asked, already not liking where this was going.
“Kind of Montenegro-ish.”
Kind of…. WHAT!?? Montenegro? But that was pretty much a war zone wasn’t it??
A fresh whoosh and several loud cracks made me hold the phone a little further from my ear. “That’s not, erm, gunfire is it?” I winced.
“Yes, sorry about that!” he shouted, not unlike Dom Joly on Trigger Happy TV. “Rocket propelled grenade. Going to have to go old man. Apparently, we’re drawing fire. I’ll get the piece to you soon as poss. Toodlepip!” And the line went dead.
Something turned up from him a few days later, but it was awful. More pressing matters on his mind I guess. I paid him anyway, and rewrote the piece under his bi-line – just in case it turned out to be his obituary. I never heard from him again. I suspect he either died in a bizarre pencil sharpening tragedy or that he left journalism and currently breeds artisan cheeses for show.
But the experience was a useful one. Thereafter, every time I employed someone new, I made sure I had an ‘insurance’ piece locked away on the hard drive if I was let down or another regional penis measuring contest broke out. In engineering terms, I believe it’s called building in a redundancy.
One of the most chilling sentences a property magazine editor can ever hear is: “The Sales & Marketing guy has just bought a new camera.” Cue the arrival of some of the worst photography that you will ever see: finger blurs caught on the edge of the shot, flash glare in the shiny kitchen surfaces, the photographer caught in the reflection of the groovy floor to ceiling windows, blurring that suggests the camera was balanced on top of a Rhianna in mid twerk.
There was, however, a genius Public Relations guy who worked for – let’s call them ‘Déjà Vu Developments’. This was not my favourite developer. They had a tendency to build the same Kleenex box design absolutely everywhere and were still stubbornly wedded to the cream cheese ceiling. But, as an editor, I would use their photography every time, because it was always so good. The key to their consistency was simply this: they employed a photographer on retainer who was encouraged to go out to take photographs of a Déjà Vu site every time the sun was shining. Consequently, every photograph was taken in brilliant light under bright blue skies. In those kind of conditions, even a Kleenex box can suddenly look like a deeply desirable pied-a-terre.
Mega brain and badger advocate Queen guitarist, Brian May is a keen proponent of building in a redundancy. Usually, on stage behind him, you will see a wall of his favoured AC30 guitar amplifiers. Three of these might have been ‘miked up’, but the others are there, not just because it looks cool, but because if the others blow a fuse, then it takes seconds for the guitar tech to bring the spares online, and the widdly widdly can continue uninterrupted.
It became terrifyingly obvious during the first weeks of COVID that successive governments had NOT been following this very sensible strategy. Where was the redundancy in terms of ventilators, PPE… and, you know, STAFF? The arrival of a major viral pandemic had been predicted for years (Check out ‘Hot Zone’ by Richard Preston if you never want to sleep again). How could we keep the widdly widdly of life going without this very important equipment? We really like the widdly, widdly! We all go a bit bonkers if we don’t get our widdly, widdly.
Spending is an issue for all governments. None of them like doing it unless they are going to get some recognisable credit for it. Hence big landscape changing projects like HS2 get lauded and trumpeted, but quietly and pragmatically stocking away some plastic gloves and aprons doesn’t happen, because it wouldn’t.
Ultimately, you’re either a go out and buy some pills because you’ve got an unexpected headache kind of person. Or you’re a buy headache pills because one day you know you’re going to get a headache sort of person.
I am distinctly the latter. And the government is too… But only when it suits it.
And so, we build HS2 for a possible future business demand. But we don’t stockpile the items useful for combating any kind of inevitable transmissible virus. We build two massive and essential aircraft carriers to enable us to project power across the world.. And then sell one. Because it’s not that essential after all. But we don’t build smart, sustainable, affordable retirement communities for the massively aging population that is DEFINITELY going to get even older.
For me, the second most predictable thing in the world, is that young, small disabled people will inevitably become older, bigger disabled people. It’s not rocket science. It’s common sense. It’s life. And yet where are the cleverly designed, energy efficient care communities for those disabled adults to be? Where is the will to aid, and ultimately remove the future burden of care from both the NHS and carer infrastructure by designing better facilities and schemes NOW. Surely if we’re not addressing the problems of tomorrow, then we’re not dealing with the realities of today.
We’re not thinking ahead. We’re not building in a redundancy. Which is odd in a still quite patriarchal world. After all, men massively over-supply sperm, and rather too often. You’d think that would manifest in public planning wouldn’t you? But no.
So, in the future, we’re going to find ourselves with a predictable headache and with no pills in the house. And we’d better hope that, like with COVID, not everybody else gets a headache at exactly the same time.
*These are the words of Mark and not Carers in Bedfordshire
Blog 9: Eat To The Beat
One of the many podcasts that I mainlined during lockdown was ‘Off Menu’ hosted by comedians Ed Gamble and James Acaster. I like it because it is frequently hilarious, often informative, and very occasionally quite touching. It is also one of those concepts – where you order your fantasy meal at a restaurant – that you can’t help but join in with.
My son, when he was very young, would put absolutely anything in his mouth. In fact, if a person in a white coat had earnestly informed me that his Autism had been caused by him obsessively mouthing plastic toys exclusively manufactured in China, then I would have been halfway to believing them.
He passed through this phase and, oddly, then became a very fussy eater, subsisting on peas, spaghetti and black olives for a protracted period. He was probably nine when he went overnight from a bacon denier to a person for whom life had no meaning unless it contained bacon. Thereafter he became something of an omnivore, wanting to try everything he could get his hands on, stealing the filling from his sister’s sandwich even as she was biting into it, and regularly helping himself to whatever looked interesting on your plate whenever your attention was elsewhere. He became violently incensed one day when, after presenting to us an unopened tub of bicarbonate of soda we declined to let him taste it.
Clearly his mouth and tasting things were a way of his making sense of the world. Sadly, this has also led to some unwise experimentation.
To this day it is sensible to present him with peeled and sliced fruit or otherwise reap the consequences. Satsumas and apples would be eaten whole, skin, core, pips and all. A bunch of grapes would vanish in its entirety, the stalk only reappearing, unpleasantly, come nappy change time. Sweets were devoured in their wrappers, lollipops with their sticks. Shopping lists would vanish from kitchen surfaces, and still be partially legible after a quick voyage around his alimentary canal.
Fun times.
My son quickly discovered that this capacity to ingest pretty much anything could be used as a weapon. Annoyed by something or another on a walk around Whitby cathedral he rapidly scooped up and gobbled down a handful of rabbit poo. Leaves and twigs regularly became an item he could rush into his mouth whenever he wanted us to understand just how irritating he found us, or what we were asking him to do. One day, inexplicably vexed by a length of string left trailing as a cat toy, the fishy mouthed little rotter swallowed it whole, then giggled happily for hours in contemplation of his great criminal cunning.
Other times he would conduct taste experiments on items you really wish he hadn’t. One Christmas, when he was disappointingly quite mature, he plucked a shiny tree ornament from a decorative bowl on the table and bit deeply into it leaving me to desperately prise his jaws apart while Mum hurriedly picked out the myriad shards and splinters of glass before he could swallow them. That was a difficult enough experience. But then, a year later, we discovered that the star-shaped, brightly coloured block of toilet disinfectant that should have been anchored to the side of the bowl was mostly missing but for a tell-tale fluorescent smear, and a distinctly chemical tang on his breath.
So it was quite surprising, in some ways, that he even made it to his 18th birthday. These days his oral experimenting is usually restricted to the petty theft of leftovers, or items left out for his sister that he doesn’t believe that she deserves. Apples are regularly taken out of school and work lunch boxes only to find that someone has already taken a single explorative bite out of them. There is no such thing as leftover bacon. This is simply bacon that my son hasn’t found yet.
The word ‘inedible’ doesn’t seem to appear in his internal lexicon. Chicken bones, lemon wedges, nut shells – all have to be scrupulously monitored and cleared away before he turns his attentions to them. A few months ago, bone tired and not really concentrating, I took myself a whisky and ginger into the living room along with a beaker of water for the boy, only to discover I’d mixed up the delivery, and my son had necked the whisky in one gulp. There was a look of mild disapproval on his face. A bit of violent burping. But he did sleep better that night.
When Mum once accidentally added garlic butter to an apple crumble recipe, our son was the only member of the family who was up for seconds. Likewise, he showed no real disapproval when a complicated salad got accidentally spritzed with hand sanitiser. So it should come as no surprise that his regular teatime routine is to punctuate his main course and second helping with four criminally sour jelly sweets, and will often take alternate bites from a bowl of strawberries, a Marmite bagel and a feisty salami. Heston Bluementhal take note.
So, what would my son order for his dream menu? Well I would hope he might opt for Dad’s BLT as a starter, then perhaps those wafer thin middle eastern pizzas that he likes. Then, perhaps, a side order of gyoza chilli soup and maybe that yummy chocolate and chestnut cake to finish.
But I strongly suspect that the meal wouldn’t be entirely complete and perfect for him unless he’d also managed to snaffle the good bits from everybody else’s plate, had a lick of the table decoration, and possibly a nibble on the menu too.
*These are the words of Mark and not Carers in Bedfordshire
Blog 10: Since You've Been Gone
The supermarket shop arrived this morning. There were the usual substitutions – one kind of tomato substituted for another kid of tomato, stone coloured loo roll for peach coloured loo roll. Pretty low stress stuff. The idea of wiping your bum on a stone or a peach feels equally odd.
The most troubling substitution was a packet of four teacakes for a much-anticipated iced spiced bun. Now I accept that to most right-minded people this substitution is probably not a good enough reason to go to war. Not quite. But I was REALLY looking forward to that bun. And, let’s face it, in terms of come-hither confectionary your teacake is less Kate Winslet in a bijoux bodice and more Bradley Walsh in a baggy onesie.
Don’t get me wrong I like a teacake. A teacake on a wet Wednesday in Wolverhampton might actually be a thing of rare beauty. But it’s not an iced spiced bun is it? I mean your iced spiced bun is a glogg soaked Yuletide fair in Copenhagen. It’s a sweet, doughy kiss of cinnamon loveliness wrapped up in a sugary duvet of sticky water icing. It’s basically a winter holiday in your mouth with extra hygge dipping sauce. Whereas a teacake is…
Well it’s Just a teacake.
I note on the packaging that said teacake was actually manufactured in Lancashire, which as a proud Yorkshireman makes this substitution akin to a biological weapon attack. Only kidding. Its far worse.
So, the point is, I had been looking forward to something. Really anticipating it actually. And I was therefore a little bit disappointed when it didn’t arrive.
That same day I happened to catch a news item about a support group for fathers mourning children who had died before they were born (Wow, gear change Mark!). The spokesman talked about how their sense of loss was sometimes considered as being inferior to that of a parent who might have lost a child after they had been born.
It chimed with something I had been thinking about. The difficulty in mourning a child who had not died, but was in actual fact quite hale and hearty. But at the same time was so massively different to your expectations of the child that you had imagined you were going to have as to be unrecognisable.
It took a lot of years for me to come to terms with that. Care professionals have rarely really understood it. I love my son, wouldn’t change him for the world. But I also deeply miss the son I had imagined that I was having – my iced spice bun if you like.
It’s a difficult one. On the day my son was diagnosed, the paediatrician kind of poo-pooed our surprise, and dismay. “Well you’ve got ANOTHER child,” she said blithely, probably fantasising about the really big Coronation Chicken sandwich she was now going to score at Greggs, once she’d pushed us out of the door. “Everything will be fine!”
It’s possible it was a cultural thing. The child mortality rates in the paediatrician’s home country are still truly horrifying. And some genders are perceived as having a greater value than others. But here it’s not. And they don’t. Read the room Doc.
We had not seen it coming. My son emerged in the world frankly a little odd looking. But by the age of 18 months he was beautiful. His hair was long and ridiculously blond, and he was greatly amused by everything. We called him our little surfer dude imagining for him a long, adventurous life of fun and frivolity, riding waves and taunting sharks across the beautiful beaches of the world.
The reality, of course, is that our son can get into serious peril within his own underpants. He’s never going to travel on his own, and he wouldn’t know what a shark was if it bit him on the arse. It’s one of those ‘Sliding Doors’ or ‘A Different Corner’ moments. Or, more accurately, ‘Sperming Flaws’ or ‘A Different Egg’ moments I suppose. The road not travelled.
So, while it is considered fine and natural to mourn someone who is actually gone, it feels a bit weird grieving the loss of someone who is technically still here.
And yet it happens all the time. When my sister-in-law died far too young, I noted that it was not the assembled female mourners who were a sodden mess in uncomfortable suits, but their other halves. The despair these chaps were feeling was as much eviscerating empathy for the friend/brother who had lost the light in his life as for my sister-in-law herself. They were all effectively destroyed by grief at just the thought of losing their own partner. This the woman, at that moment, sat by their side, wondering if she’d packed enough pocket tissues, and how difficult it might be to get snot out of his snazzy new Moss Bros.
As dementia slowly consumed my Mother, I recall mourning the little pieces of her that were being stripped away every time we talked. It was like she was being replaced by someone I didn’t know. Someone who was obsessively preoccupied with things that no-one else cared about. Someone hard to like. When she finally died, if, I’m honest, I was relieved. The only just barely functioning shell she was by then, was not my Mother, just an unpleasant changeling who had apparently borrowed my Mother’s body. She was simultaneously in the room with me, and yet also long gone.
These days I feel it is natural, honest and brave to admit that you are upset that your loved one is no longer, or never will be the way you expected them to be. It is necessary to mourn the person they were or the person that you thought they were going to be. Ultimately, mourning what you feel you have lost or what you will never have helps you to better love and understand the person you have lost, or the new person that circumstance has arranged for you to meet.
That’s what I think. But I also think that autonomous cars are a good idea, so make of that what you will.
*These are the words of Mark and not Carers in Bedfordshire
