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Carers Week 2022 Competition Winners

Each year we run a competition to celebrate Carers Week. This year we asked for carer stories in response to the theme of ‘Making Caring Visible, Valued and Supported’. There were so many fantastic entries and we'd like to thank everyone who entered and shared their stories. We're proud to present our three winning entries here. 


1st place

Our first place winner Ann says "My inspiration was desperation! I have been trying to help my brother for four years with his mental ill health... Effective help is not easy to access or maintain, my brother's life has been devastated. My role as a carer as well as supporting my brother in every way, is a constant battle to motivate the Health System to actively engage with my brother and provide the care he needs."


Making Caring Visible: Reciprocity


My Brother cared for me when I was small, our dad died when I was two.

My brother was eleven then, he was big and strong to me…

Our mother, bless her, suffered grief and we both suffered too.

She had to go to work of course, my brother cared for me…

Nanna was around to help but sadly she was old.

The time soon came when Nanna was not there…

Our life was tough when we were young, and now, for you… I care.

My brother I care for you, as you no longer care…

Depression has you in its grip, and nothing you can do…

Four years of hospitals, care homes and Covid have put you to the test

I have had to be persistent and I will always do my best…

Little things are now too difficult for you to do alone

Sometimes I feel invisible, the system seems quite deaf…

But I have a voice for you, and I will moan…

Caring should be visible… and audible as well…

So this story I will tell and tell… and one day you will be well.

Depression destroys in many ways, it takes away your energy, and love of life… it’s even difficult to think, to wash, to walk… to be.

But I promise I do care for you as you once cared for me.

Suffering in silence, is want you tend to do

I will get the help you need… because I care for you.




2nd place

Second place winner Mary says: "I wrote and performed this poem at open mic because I wanted to allow myself as his carer to become more visible and because I wanted him to be more visible and for some of the internal stuff of autism to become more visible. By writing this poem I valued and supported myself and my son. By performing this poem to an audience I mainly didn’t know I helped them to have insight and that in turn opened the opportunity for them to value and support others who they may meet in future times with autism and I helped myself be more valued and visible in my carer role."


It’s the little things in the end

It’s the little things in the end
Like watching my son bend to put on his shoe
Struggling not knowing what to do
Just not able to figure it out
Wanting to throw away his shoe and shout
Not able to see, if he loosens the lace
He can open the shoe and make enough space
I tell him this gently then on slips the shoe

The relief instantly clear all over his face
That tiny change is all it takes to smooth his frown
Stop his frustrated anger pause at the edge of sliding right down
Into rage and despair and vaguely wishing desperately that he could do this simple action by himself, that it could be so much easier, then he wouldn’t have to use so much energy in what for other people is done seemingly without a care

it’s the hidden things in every day
Exactly and only so much butter on his bread
Not being able to shut down his head
Far less filters in his autistic brain
There’s a constant flow, no thought separation
It’s an overload of exceptionally detailed information
No delete, no reset button, no rest
Every minute of every day trying his best
It’s all the ideas jumbling and tumbling round in his brain
It’s like he’s permanently aboard a jam packed information runaway train

Being his Mum and his carer has helped me see
The autism in him and in me

We both have a hard time holding your eyes
Staying on task
Being unable to recognise sarcasm or separate truth from lies
Its the unspoken things in both of us of
Dyslexia, dyspraxia and dyscalculia
Problems reading social cues
No knowledge of just what is what
Normal for him is always wearing odd socks

It’s sensitivity to smells, tastes, sights and sounds
Sometimes in speaking we can appear to be rude
We just can’t handle what others call food
It’s aversion restricting what we eat
It’s little known, it’s not a fad, we aren’t being fussy or ill behaved or bad
It’s no to bright lights and scratchy clothes
It’s certain smells that yuck really hideously bother the nose
It’s no to overcrowded places, too much noise, too many faces

It’s autism, it’s ASD, It’s in my beautiful son and it’s within me

It’s in this poem to spread the word to let my carer self be valued, be visible, be supported and be heard




3rd place

Third place winner Geraldine says: "When my husband was diagnosed with dementia last June I decided to keep a diary as a way to get my head round what was happening and to get stuff off my chest.... I then joined some carers/dementia groups on Facebook which I found very supportive, and decided to turn my diary into a free blog to share with other people on the same sad journey that we are on.

It also seems important to tell people what it is actually like caring 24/7 for someone with dementia - and the toll it can take behind closed doors. Dementia isn't a "sexy" topic - but as we all live longer it is something more and more of us are going to have to come to terms with. So I have tried to tackle the realities of life with dementia with compassion - and a sense of humour.

Below are extracts from my blog Midsummer Madness - named for the day when my husband received his diagnosis.
"


Midsummer Madness

IT takes me less than a week to realise I am not a saint.


When we moved my widowed father, who suffered from Parkinson’s disease and dementia, to a care home just 400 yards from my home, I visited him almost every day for nine years.


As he sunk further into his twilight world, I coincided my visits with meal times – feeding him gave us something to do together when he could no longer talk, and it freed up a member of staff to spoon some nutritious slop down another of the inmates, as my father had insisted on calling his co-habitees in the days when he could still talk.


And no matter how difficult he became, I prided myself that in those nine long and often heartbreaking years I never once lost my temper with him...


But in the early hours of this morning I discover it was because I didn’t actually have to live with him.


I could visit, congratulate myself on my daily daughterly devotion, and then scuttle off home to my life...duty done.


But I have gone to bed as exhausted as any new parent for the past week – except that my new baby weighs ten stone and has his own views about how things should be done.


The last of my three sons was born 45 years ago, when I still had the energy for motherhood, and I have never felt myself older or more tired than in the past few days.


So I am unprepared for a fight in the middle of the night about whether it was 1.30am or 11am...


No raising of the blind to reveal the black night outside persuades James that he should go to sleep.


And showing him the digital display on my ipad merely convinces him that I have somehow “fixed” the time to avoid showering and dressing him.


So after 15 minutes of mindless argument I lose both my temper and the plot, and simply shout at him to get back into bed NOW – which he reluctantly does, albeit with the aggrieved air of a man who has been very much taken advantage of.


Two hours later I am still lying in the spare room bed where I have decamped churning about it - and two hours after that I am woken again by James demanding to be up and dressed...


And this time nothing will placate him.


For 20 minutes he shouts at me that I am mad – can’t I see it is 11am?


I’m ashamed to admit that I am middle-class enough to wonder whether the neighbours are a party to this dawn lunacy, and if so what they are making of it.


I close the bedroom windows, and sit down and decide it is time to use the “d” word – dementia...


I have avoided it in since James left hospital, preferring to say we are seeking help for his confusion – an explanation he has accepted without questioning – and possibly without remembering.


So with more gentleness than I am feeling I hold his hand and ask him if he remembers his mother, who was diagnosed with dementia in her early fifties.


He gives me a look of withering pity and says: “Of course I don’t remember her. She died when I was two...”


I remind James that he had been middle-aged when she had died, and that she had suffered three decades of the same confusion that is now affecting him...


Then I promise him that I will do all I can to help him – but that he must realise I can’t function without sleep.


Grudgingly he agrees that I can bring up breakfast at 7am – but for the next hour, as I try desperately to doze off for a few more precious moments, he shouts encouragingly every five minutes that he is “trying to go back to sleep...”


*****


IT is 3am and I awake groggily to what is obviously a midweek party at the home of a neighbour.


As loud conversations float through my open windows on the night air, punctuated by gales of laughter I curse the thoughtless bastards.


James has woken me several nights running this week and I am so tired even my dreams are filled with the overwhelming desire to sleep.


But as I emerge from the depths of my slumbers it occurs to me that perhaps the noise isn’t coming from the neighbours after all, but from somewhere very much closer to home.


It is coming from James’ bedroom and for one happy moment I think that perhaps we have cracked it – he is awake and has for the first time decided to watch TV rather than wake me up to tell me about it.


Then reality hits.


How is the noise, through two solid oak doors and the length of the landing, so loud?


I leap out of bed and into James’ room where the noise hits me like a wall.


James has put The Simpsons on, at a volume so loud it is excruciating, and as it belts out I realise the ‘thoughtless bloody neighbours’ disturbing the night are in fact us...


James meanwhile has raised the blind, torn off his night bag which is now dribbling pee around the bedroom floor and is trying manfully, but unsuccessfully, to get dressed.


I switch off the TV, show James that it is still dark outside, clean the floor with the mop and bucket which now stand permanently to hand in our bathroom, tidy away his clothes and persuade him back to bed.


Once settled I ask him what he thought he was doing, and he gives me a sniffy explanation.


“It is daytime and I was trying to get dressed,” he says with the somewhat haughty air he has adopted when cornered.


“But I will tell you something right now - the staff aren’t doing nearly enough to help...”



****


I AM sitting in the toilet at the town library crying because I have reached the end of my tether and I am so glad to be locked in a space by myself, that I can’t hold back the tears.


And then I cry because I realise that sitting crying in a public lavatory really has to be a new low.


But here I am just the same, the tears streaming down my face.


I feel pathetic – but also desperate after a literally shitty 48 hours at home which left me feeling that if I didn’t get out for an hour I would kill one of us...I am not bothered who, but I still have enough sanity to realise that a judge may not feel as liberal in this matter as I do.


It started the day before yesterday when James’ catheter blocked again – something which seems to take place every two or three weeks now.


The district nurse who came was – as are all of her colleagues – kind, efficient and not the least bit annoyed that she had been about to leave work for the day when my call came in.


She changed the catheter with commendable ease and left James draining and comfortable, but this intrusion into his afternoon left him agitated, and I knew that I would be in for a tough night which would see him roaming around the house.


And I was right.


At 1am – after I had lain awake waiting for his inevitable arrival he came to tell me the time.


And he appeared on the hour thereafter.


By 7am I had given up all hopes of sleep and went into our bedroom to find that James had diarrhoea.


So before we had even had a cup of tea to start the day I bundled him into the shower, hosed him down and dosed him with Imodium.


The poo-nami continued unabated throughout the day and by the time we went to bed I had showered him five times, and was beyond exhausted.


But my hopes of some sleep were blighted a second night by James appearance in my room sans nappy and with his night bag removed.


He and his bed were covered in poo, there were puddles of pee all over the floor and his duvet was soaked.


I showered him, changed the bed, mopped the floor and pleaded with him to leave his nappy and night bag alone for the rest of the night.


In the morning it became apparent that there had been no let up in the pooing, but now James was refusing to take any more medication on the grounds that it was the Imodium “which was causing it...”


Rather than kill him or myself I got him showered, dressed and in his chair, gave him a mug of coffee and simply fled...


I knew if I didn’t have an hour to myself – without being bombarded about an imaginary dental appointment – I would not be responsible for the consequences.


Which is why, on the last Saturday before Christmas, as the nearby high street was bustling with shoppers, I was locked weeping in a public lavatory trying to steel myself to go back home.


And hoping that when I did so, home wouldn’t be covered in poo...


*****


I HAVE called downstairs for James to bring me up a cup of tea after an afternoon nap, the only thing he can still do, but he is unexpectedly cross with me.


Ssssh! For heaven’s sake will you keep the noise down,” he calls up urgently, “you are embarrassing me…”


My curiosity gets the better of me and I wonder aloud what I have done.


“There are about a thousand people here listening,” James replies, “and they are all staring at me…”


I contemplate the unlikely possibility that a thousand uninvited guests have crammed themselves into the sitting room in the hour I have been asleep, but my imagination, strong as it is, cannot come up with any scenario where even a tenth of this number would have arrived so inconveniently.


Or where. had they done so, they could possibly have crammed themselves.


Then I hear the sound of organ music and singing wafting up the stairs.


“James - have you been watching television?” I ask suspiciously, putting two and two together and coming up with the Commonwealth Day service at Westminster Abbey.


“Will you be quiet,” he hisses again between clenched teeth. “You are making a noise in the cathedral and spoiling it for everyone…”


Fortunately, perhaps, the Queen has not been able to attend this year’s service so she at least is unaware of my social faux pas vis a vis the tea echoing around the pillars and bouncing blush-makingly off the cathedral’s vaulted ceilings.


I explain to James that his supposed guests are mere phantoms conjured on the screen who cannot see anything going on in our house and suggest that if they are upsetting him, he can just go back downstairs and switch the tv off.


“I can’t go back to my seat, because I’ll disturb the service again,” he protests holding a warning finger to his lips, “and if I switch the tv off it will make everyone disappear and ruin their day.”


The music below swells to a noisy climax so I tell James that if he creeps back quietly into his pew right now no-one will notice.


And apparently he does, because he risks the wrath of the congregation to shout cheerfully up to me that he has arrived back in the cathedral just in time to bag a blessing…


Bless indeed...


*****


IT is 2.45am and I am both utterly exhausted and quite unable to sleep.


For the past 48 hours James has suffered from one of his increasingly regular bouts of diarrhoea and I suspect both the shower and the washing machine - which have done sterling service over the past two days - feel quite as tired as I do.


Before settling James to sleep at ten I gave him his second shower of the day – which was rapidly followed by his third at 12.30am and his fourth two hours later.


Wobbly as he is with tiredness, and befuddled with sleeping pills, getting James into the shower is like wrangling a balky toddler: he is less than cooperative and I am frightened of him falling.


But eventually I get him hosed down - again.


And back into bed - again.


Then I plod wearily back to my own room where I sit for 20 minutes listening for the regular breathing over the intercom that tells me James has finally dropped off and I can consider settling down myself.


But sleep won’t come: so I throw the bedroom windows wide and look out over the local neighbourhood, where a few lights pierce the inky darkness and I wonder who else is awake in the early hours – and why?


Are they young parents soothing a crying baby? Tired shift workers? Battered wives or anxious insomniacs?


Or are they, like me, on 24/7 duty caring for a family member who – like The Windmill – never sleeps...


We never know what goes on behind closed doors, but I do know that all over the country there are many other lights burning quietly through the night...


And I wonder how previous generations coped.


I have the internet, grocery deliveries, disposable nappies, a washing machine and tumble dryer, and I can drive...


My own grandmother, left widowed and penniless with ten children to support, took in laundry to feed them - with ten children of her own to keep clean and no washing machine...


There is a family story that she went to the dentist to have a tooth removed and was told that it would cost “two shillings with anaesthetic, or a shilling without...”


She stoically chose the “shilling without” – those twelve extra coppers being beyond her purse.


And even 30 years ago my mother faced a tough time caring for my father without a car, or family close by.


“When you are too old to drive,” she said sadly when my father gave up his car, ”you are too old to walk.”


I simply cannot imagine how they did it.


A monk I once interviewed said the reason religious rise to pray throughout the night is that “the hours of darkness are when the world has most need of prayers...”


So I offer one for all those other silent watchers in the night.


God bless us. Every one...