As a family, we care for Azhar round the clock (Picture: Saeed Ahmed)
It started with toast.
Earlier this year I found myself crying in the living room because of an incident that kicked off when my son, Azhar, was asked to eat some lunch.
It sounds trivial, I know, but because Azhar is disabled and has complex needs, small incidents like these can escalate, and before I knew it he was screaming and trying to head butt me.
Ironically enough, when the dust had settled he said simply ‘toast’ and calmly proceeded to eat the very meal that had triggered the whole thing.
I broke down in tears, head in hands.
I love my amazing son more than it’s possible to say, but there have been times when being a full-time carer has led me to breaking point.
Azhar has autism, severe learning disabilities, epilepsy and issues with his sinuses.
As a family, we care for Azhar round the clock – and I do mean round the clock. He sleeps in our bedroom so we can keep an eye on him during the night. We support him with everything, from getting dressed to feeding, bathing and general hygiene.
It has a huge impact on all of my family’s lives.
My wife, Fakhra, is Azhar’s main carer, and I have to work to help support the family, so everything revolves around what he needs.
I’ve tried tirelessly to find respite support that could help our family, but we have been let down too often. Research from charity Sense shows two thirds of carers of disabled relatives are exhausted and burnt-out, and without better help I fear we’ll hit breaking point.
Breaks for people like me are scarce (Picture: Saeed Ahmed)
Last August I gave up my stable, well paid, IT consultancy job because I was away from home too often, but with so many extra costs to having a disabled child, be it specialist food or extra energy bills for medical equipment, I found myself in another job a few weeks later.
Due to Azhar’s autism, routine plays a big part in his life – during the week he will wake up early and needs support washing and dressing.
He is on his computer most of the day, eating at his desk with one of us often having to feed him.
It’s very difficult to change his habits, and any issues with his computer or the internet cause massive upset – tantrums and meltdowns are a daily occurrence.
Of course there are positives. Azhar is a very happy person. His interactions are largely based around scenes he’s watched on TV or life experiences and he loves to reenact them with his family in starring roles.
I never blame Azhar for the meltdowns – I just have to accept it is his condition and carry on.
I also worry about my other two children, and whether I’ve been able to spend enough time with them.
And my situation isn’t unique. Sense’s research shows the average family carer looks after their disabled relative for 42 hours a week, with almost one in five unable to remember the last time they had a break.
This has a huge impact on families and their mental wellbeing. There are days I feel very, very low, as caring is such physically demanding and mentally draining work.
But breaks for people like me are scarce.
It wears you down and you forget about yourself – it takes weeks of planning for me and Fakhra to get out of the house once a year to mark our anniversary.
And respite services could hold the key for us to get more rest.
From the age of 16 until Azhar was 18, he had respite over a long weekend or during the week and this worked so well for us.
The centre would drop him off at school and pick him back up. Azhar loved this respite centre and used to look forward to it – he called it ‘bedtime’ because he liked staying over.
It provided some much-needed breathing space for me, my wife and our other children, to recharge our batteries, spend time together and catch up on life admin.
But when Azhar turned 18, we were back to square one.
We had to start the process of finding respite support again, as Azhar was now an adult.
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It was soul-destroying – it’s such a huge challenge to find somewhere local that meets Azhar’s needs. He went to one service that was single rooms behind locked doors, it just wasn’t comfortable for him or for us.
Even though as a family we are technically entitled to 42 nights of respite a year, Azhar is now 24 and since he turned 18 he’s had two days of respite and that is it – service providers have told us they simply don’t have space for us.
(Picture: Saeed Ahmed)
Finding an appropriate centre felt like a battle, and we were delighted when we found one not too far from us. In March 2020, Azhar had a few days there to try it out and he liked it, but then Covid hit and many of the services we were exploring shut their doors.
Things may be turning a corner recently as we’ve been in touch with another potential service provider, so we remain hopeful we can establish some form of normality for Azhar – and secure some essential time to ourselves for my wife and I.
There needs to be more support out there for carers, as well as better public awareness of what families like mine go through day in and day out.
All I ask is that you put yourself in my shoes – every day is like Groundhog Day and it really takes its toll.
Better respite services aren’t a luxury – they are a lifesaver.
Sense has launched a new campaign calling for greater respite support for families. For more information visit www.Sense.org.uk/GiveCarersABreak
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It wears you down and you forget about yourself – it takes weeks of planning for my wife and I to get out of the house once a year to mark our anniversary.