Living life with Scotland’s carers
Living life with Scotland’s carers
By Fiona Walker BBC Scotland social affairs reporter
Looking after someone’s every need, virtually unpaid, sometimes on duty 24/7, surely only saints need apply. Yet it s thought that three in five of us will be a carer at some point in our lives. They can’t all be expected to be saintly. I went to see how they do it.
Meet the Arthurs
I practically moved in to the Arthur family home for a few days because I didn’t feel I could know what happened around the clock without being there.
Tricia and her husband look after Thomas, 16, who has cerebral palsy, osteoporosis and epilepsyTricia and Tommy look after their 16-year old son Thomas, who has severe cerebral palsy, osteoporosis, epilepsy and is registered blind.
He can’t walk or talk or feed himself or go to the loo. Going to meet a young man with that level of disability, I was determined not to see him as helpless.
Here was my first surprise – Thomas made me laugh almost instantly – because his is the most wonderfully infectious laugh. And that’s how his parents cope – their own brand of humour. Once you’ve cottoned on you can’t help pitching in.
But the humour doesn’t disguise their struggle. I can see they’re not the kind of people who like to ask for help. And for years they didn’t.
But it became too much a few years ago. Tricia’s mental health suffered. Tommy found it difficult to work when his wife needed him at home to help lift Thomas.
He told me: “Doing this (lifting Thomas) four times a day takes a lot out of two of you, let alone just one.
“Tricia is not as young as she used to be either and Thomas is getting heavy. He is a big boy.”
Yet Tommy is a proud man wanting to support his family financially too – it didn’t add up. The family said their biggest struggle of all was getting help from Inverclyde Council when they finally asked for it. It was the bureaucracy which broke them. They said they found themselves begging. Their dignity was ditched.
They now have agency carers come in to help them get Thomas up and ready in the morning on school days but that’s not enough to allow Tommy to get back to work full-time as a plumber. Because it takes two people to change and lift Thomas, it would need agency carers to come in three or four times a day. Then they could have something approaching a normal family life.
The absurdity of their situation is only clear when you know what the family have been told about the economics. They say that providing full agency support to help them to continue caring for Thomas at home would cost the council £34,000.
The cost of residential care for Thomas, if his family couldn’t cope, would be £217,000. Wider research into costs to the economy of Scotland suggests that if carers stopped doing what they do it would cost society almost the same as the entire NHS budget in Scotland.
Being Thomas’ carer is a physical, medical, mechanical and emotional job. It’s changing his incontinence pads using the same kind of baby wipes I use when I change my own baby’s nappies, it’s administering medicine and feeds through the stomach, it’s using hoists and suction machinery to clear his lungs, it’s putting on a big smile, even when your face is fighting it.
Thomas’ care is now being reviewed. Inverclyde Council said it had provided support and it has responded in times of crisis.
Meet the Mahmoods
Kasim Mahmood is 22 and has Asperger’s Syndrome, a form of autism. He finds it hard to read social situations, to make friends and he would love to get a job.
Despite his fragmented education, he has great computer skills and he buries himself in music he loves. His mother Rucksana is his official carer.
Rucksana Mahmood cares for her son Kasim who has Asperger’s SyndromeWhen you see them walking through a shopping centre together they look like any other mother and son. And when I went to spend some time with them, I could feel the bond between them immediately.
But they don’t hide how fraught their relationship has become either. Because his life has no structure, Kasim spends all his time with his mum. She says she’s feeling so trapped it’s affecting her mental health. She talks about it with such insight; she takes me with her on her journey into despair.
“I’m struggling,” she told me.
“There is a fine line to when you are sane and insane. I’m struggling to keep on this side of it.”
Rucksana preys that Kasim can get help to go to college and make friends of his own. She feels he’s been let down. They both tell me they’ve utterly lost hope.
“My fear is what is going to become of him when I am not here. What chance does this young my have?” added Rucksana.
I find myself wishing I could spend a day inside Kasim’s head to help me understand the extent of his torment. He’s warm and open and I can’t bear to think he queries why he was even born at all. When he writes a letter to someone he’d like to call his friend, I can’t hide my emotion.
In the letter, he begs for friendship, to have just one person to call his friend. I imagine the joy it would bring him to have a true friend. But I imagine how the person receiving the letter might not feel the same way.
Rucksana used to love entertaining. When she starts cooking, I can see that Rucksana – the one she says she’s lost. She never entertains or socialises now.
She says she’s teetering on the edge of insanity and I can see she looks into darkness. I want to be able to turn on the light for her.
Getting Kasim the help he needs is a priority. Unfortunately it’s not just Kasim who needs support now.
Glasgow City council said it has offered support to Kasim. It has now offered Rucksana a carers’ assessment.
The BBC Scotland Investigates programme Meet the Carers will be on BBC1 Scotland on Monday 26 March at 22:35.
The full statements from Inverclyde Council and Glasgow City Council will be available online after transmission.
