The love, hope and despair of caring for a disabled child
As a mother in the UK is charged with the deaths of her three children, Victoria Lambert talks to two families about the difficulties of caring for a profoundly disabled child
Published 27/04/2014 | 02:30
How do you describe life as a parent of a child with profound or life-limiting disabilities? "Inhumane. Insane. Pushed to the wire." Henrietta Spink veers from the language of despair to that of hope. "It has been an extraordinary journey," she says, with some positivity, of the past 26 years spent raising her two sons, both of whom need round-the-clock care. And then: "Our life has been destroyed."
Henrietta, 52, and her husband Michael, 57, an expert in Islamic art, understand better than most the tragedy –there is no other word – that is currently unfolding in south London, where Tania Clarence, 42, has been charged by police over the deaths of three of her four children: three-year-old twin sons Ben and Max, and four-year-old Olivia, all of whom had a progressive genetic illness called spinal muscular atrophy (SMA), which impairs physical abilities such as moving, walking and breathing, but does not affect mental development. The children's father Gary, 43, a director at City bank Investec, was away with the couple's eight-year-old daughter in the family's native South Africa when the three died.
"There have been times," says Henrietta, "when I have wished all four of us were dead. It is remorseless, unrelenting, a situation for which there is no manual, an emotional black hole."
Henrietta has cared for her sons Henry, 26, and Freddie, 22, unstintingly since they were born. Henry is severely epileptic, cannot walk or talk, and is incontinent. Scans have detected no brain damage but he exists in a sort of stasis: an adult body suspended in the world of a three-month-old baby. Solidly built and 5ft 11in tall, Henry is still growing, yet he is barely conscious of anything around him.
Freddie is autistic, hyperactive and, although 17 stone and 5ft 9in tall, behaves like a three-year-old. Born with a diaphragmatic hernia – his stomach organs were in his chest – he was immediately placed on life support, where he suffered a stroke, which went undetected for 15 years.
The Spinks understand that there is an unknown genetic condition which affects both boys. Scientists at the University of California Irvine have been working on a sample of the boys' DNA for five years and believe they will soon isolate the responsible gene. The hope that engenders – of an explanation, if not some possible therapy – keeps Henrietta going. But, she explains, without some prospect to look forward to, life could be too bleak to face.
"The boys are currently able to attend a specialist college in Truro [close to their home], where Henry is taken swimming and given multi-sensory experiences.
"Freddie is taught basic life skills there – like crossing the road. He will never learn to do it alone, but he enjoys going."
But during holidays such as Easter, the family work alongside a team of carers.
Henrietta and Michael are currently wiped out with exhaustion. Because outside term-time, life returns to the grinding routine that has dominated the past two-and-a-half decades.
"Every night, one of the boys will need help at some point. Freddie wakes properly at about 4am or 5am, and from then on one of us is up monitoring him. He could hurt himself otherwise, for instance, by pouring boiling water over himself," she explains. "Then I do six lots of washing because Henry is incontinent [and Freddie needs total assistance] and I spend two hours a day cooking to ensure they have proper nutrition. Freddie has a severely restricted throat, so his food must be chopped minutely or he can choke."
All day long the couple lift and carry their sons – Freddie can only walk with a carer on each arm – and they try to stimulate or calm them. Meanwhile, the financial support the couple receive is so complex that Michael spends two hours a day on spreadsheets, she estimates.
Then there are the endless legal battles to fight, which have driven Henrietta mad with frustration over the years. They challenged their local council when the couple lived in London.
"We now have a good package of care in Cornwall, but we feel we have to be prepared to battle on a regular basis to keep it from being cut."
There is no escaping the fact that the totality of managing both boys is utterly time-consuming and the equivalent of a part-time job, meaning it is impossible for either of them to hold down full-time employment, which adds to the financial worries.
Henrietta's friend Anne Jones, 62 [the identities of the Jones family have been changed], who lives in west London, understands. Her son Robert, 26, was born with agenesis of the corpus callosum – a rare birth defect where the corpus callosum, the band of white matter connecting the two hemispheres in the brain, fails to develop normally.
"Robert doesn't speak – just the odd word, although he understands us well," Anne says. "But he has no concept of danger, so he must be watched 24 hours a day."
Her son is now living in a care home in Suffolk and visits during the holidays, but for the first 17 years he was at home. "I was on my knees," she says, candidly. "He'd get up at 5am and, once up, you'd have to be. My husband or I would take him to the loo, wash and dry him, dress him, get him downstairs, get him to eat. It was constant care and vigilance."
Although she is sanguine now about the exhaustion, and tries to defuse tense situations with humour, she regrets the impact it had on his two younger siblings, who were bullied at school because of their "different" brother. "Their lives had to revolve around Robert's needs, which wasn't fair. We simply had no spare attention."
The disability charity Scope has just released a report that shows how life simply costs more when a family member is disabled in some way. Richard Hawkes, chief executive of Scope, says: "Disabled people and their families already have to buy things – like specialist equipment – that most families don't have to budget for. Disabled people and their families also pay more for the everyday items such as taxis."
The impact cannot be overstated. Anne's husband Jeremy, an architect, is still working at 70. The Spinks were forced to sell their Battersea home due to debts.
"The financial strain is overwhelming, but Michael can't afford to fall apart," Henrietta says. "The longing to have time for one another, for sleep, is devastating. The loneliness of our situation is unbearable at times."
Ultimately, it is not just the forms, the worries, the loneliness, the endless broken nights that affect these families most (though none of those factors should be underestimated); it is a constant fear for the future that seems to hurt most.
"At the moment Robert is safe and well looked after," Anne says. "But if that changed, the home was sold or closed, he would be devastated, and so would we. I hope he will be there till he dies, and that after we go, his siblings will watch out – make sure his paperwork is done, take him for weekends – but I wouldn't want them to have to take full charge. It would destroy their lives."
Henrietta does not even have that peace of mind.
"I worry about what happens if one of us dies. How would the other cope? And what will happen when we both die? The boys – properly cared for – have a normal life expectancy. There is no reason why they should not live into their 70s," she says.
"When I was younger I couldn't look ahead. But now you realise you are over halfway through your life. It is a terrifying thought. Who will take my role? Who will protect them?"
She gathers herself. "Not a day passes when I don't think we will find the answer. I believe the gene sequencing will explain what has happened and lead to a treatment. Life is about polishing the diamond – we absolutely love our boys and simply hope we are doing our best."
Details of the Henry Spink Foundation are at henryspink.org.
A family tragedy unfolds in Surrey
Investment banker Gary Clarence flew back to Britain from South Africa after three of his four children were found dead at home on Tuesday night.
His wife Tania Clarence appeared before Wimbledon magistrates, charged with killing her three-year-old twin boys, Max and Ben, and four-year-old daughter, Olivia.
Mrs Clarence, of Thetford Road, New Malden, has been remanded in custody until the next hearing at the Old Bailey on April 29. Mr Clarence, a director at City bank Investec, was in court for his wife's appearance.
He was on holiday in South Africa with family, including the couple's eight-year-old daughter, when he was told about the deaths of the three children. The children had the life-limiting genetic disorder spinal muscular atrophy.