Neil and Kazumi Puttick were adoring parents. They had devoted every hour of the past four years to caring for their son, Sam, after a road accident left him with a paralysing spinal injury.
They had converted a Wiltshire farmhouse into a bespoke hospital for the little boy; Mr Puttick gave up his job as a finance manager; and together they cared for Sam 24 hours a day until he began school. His life was their life. And when he died, they found it impossible to go on.
Last Sunday, Mr and Mrs Puttick leapt to their deaths in a tragic double suicide, less than 48 hours after Sam died from meningitis, aged five.
Their inability to imagine life without him ensured they did not waver during a 140-mile drive to the cliffs at Beachy Head, East Sussex, holding Sam's lifeless body in one backpack and his toys crammed into another.
Their story is an extreme illustration of the emotional turmoil experienced by more than six million people who provide informal or unpaid care for relatives or friends in the UK; one in five of those people give up work in order to care full-time.
According to experts, a devastating combination of grief, the sudden loss of identity, and the isolation caused by the withdrawal of health and social services after the person dies or moves into a home, can leave carers particularly vulnerable to an emotional breakdown and ill-health.
Imelda Redmond, chief executive of Carers UK, said: "Carers can put so much into looking after someone that they lose their jobs, their friends, their old identity, as well as the ability to think about themselves. This is such a critical period and the time when they need most help to start rebuilding their lives, help that most people never get. Sadly, many people never recover from the gap left in their lives after the person they cared for dies."
Carers are twice as likely to suffer from depression and other stress-related health problems than the general population.
According to new research published tomorrow, carers suffer physically, emotionally and financially as a result of being ignored by professionals who think they know best.
Nearly 90 per cent of those questioned feel their role is overlooked by nurses, doctors and social workers, while around 75 per cent of them feel friends and family fail to appreciate how hard they work, according to a survey carried out for this year's Carers Week.
Ms Redmond said: "Time and time again we hear from carers that they feel completely ignored and invisible to professionals, who dismiss their expertise and knowledge when it comes to making decisions about what their loved one needs. This lack of recognition and the nightmare many people have trying to navigate their way around the care system are the most common causes of stress for carers."
Most people want to look after their loved one when the time comes, but may lose colleagues, friends and family as a result.
Jane Gammage, from Macmillan Cancer Support, said: "It is essential that professionals get carers thinking about what will happen when the person dies. Most people get a lot from caring but, when that role ends, some can be left with a void, no identity, and no reason to go on."
Nicola Geraghty, 34, from Manchester, juggles looking after her two nephews with being a student nurse. Both boys have Duchenne muscular dystrophy with an average life expectancy of 18.
"My mum and dad took responsibility for Damon, 11 and Ben, seven, as my sister wasn't able to look after them. Damon is in a wheelchair, but Ben can still walk as he's on steroids; his behavioural problems are the most difficult thing to manage but they're both a joy most of the time. My parents have given up work to look after them, but I travel an hour most days so I can help out. It can feel like I'm splitting myself in two sometimes; I feel under pressure to leave work early, but it's not always possible. We know the boys have only got a few years but I try to stay hopeful because you never know what medical research might bring. We can get snappy with each other due to the stress but I'm so happy I've got the chance to look after them. The thing we'd like most is some respite care so we can all recharge our batteries."
Christine Ellis, 57, from Marlborough in Wiltshire, cares for her husband, Barry, 61. He suffers from a rare neurological condition called ataxia.
"We went to the doctor because Barry was having trouble with his legs. After tests, we were told there was nothing they could do for him, he should give up his job and he'd never work again. Straight away we lost his wage and had to make major changes. Over the past 12 years things have got worse, but he's still pushing himself because he knows once he starts using the wheelchair, he'll never get out of it. He can't walk or coordinate his movements. He's unsteady on his feet and his speech is slurred. We hear people making comments about him being a drunk. I've worked at a bookshop since I left school and I still work 32 hours a week. I leave him some lunch but I do worry because he falls frequently and has hurt himself in the past. Barry knows he will be totally dependent in the end. If he had the money, he says he'd go to Switzerland when the time came for euthanasia."
Georgia Thompson, 13, from Mountsorrel, Leicestershire, is in remission from acute lymphoblastic leukaemia. Her mum, Nicola Housley, 36, said:
"Four years later I still can't believe my daughter has had cancer. It was pretty much me and her at home for three years. We have a great relationship, but it was really isolating, like I'd dropped out of society altogether and I suddenly had no identity apart from being the mum of a sick little girl. I had just got married and everything was perfect, then came the cancer. I was at home all the time, looking after a sick child with this diagnosis hanging around our neck. The marriage didn't survive, maybe it wouldn't have anyway. It's heartbreaking to see your child in such pain. It completely tore me apart. I came near to a breakdown a few times. But I couldn't afford to be ill, I had to be OK for Georgia. I can totally understand why those parents committed suicide at Beachy Head last week – I couldn't live without my daughter, she's my everything. Trying to imagine life without my child is impossible, I get what they did."
Iain Macmillan, 46, from Scone, Perthshire, looks after his mum, Ruby, 72, who has Alzheimer's disease, a brain tumour and rheumatoid arthritis.
"I had a fantastic relationship with my mum. She looked out for me when I was a heavy drinker, so I felt it was my turn. But I didn't realise how hard it would get and I've reached the end now. My life involves not sleeping and worrying about what mum is going to do next. I get up at six and my mind starts racing because I'm worried whether the carer is going to be on time, what standard they'll be. I'm going through the grieving process now because this is not my mum. It's hard cleaning up after someone I don't recognise any more. I know it will be difficult for me when she goes into a home."
Paul Buzzard, 56, from Coalway, Glos, gave up his career as a teacher in a private boys' school to look after his quadriplegic daughter, Ione, 10. He has a son, Jake, 13, with Asperger syndrome and two 'healthy' children.
"My wife, Jenny, has carpal tunnel syndrome so she couldn't cope with Ione. The choice was giving up my career or putting her into care, so I left my job and started training to be an accountant which gave me the flexibility I needed for Ione. I don't regard it as a burden, though it's obviously far more work. I feel tired a lot, and leaving the house is like a military operation. But on the positive side we have become a much closer-knit family, we're always together. I used to work long hours, six days a week, but now I'm here when the kids get home from school. My biggest worry is what will happen when I'm not here any more. Ione is 46 years younger than me, which is why I'm trying to become a chartered accountant so I can work into my old age and afford to buy in the help I'm happy with."
David Balfour, 16, from Livingston, West Lothian, helps care for his dad and younger brother, Alastair, 13.
"My little brother was born with cerebral palsy, epilepsy and as he grew up he developed autism, which made our lives much harder because of his behaviour. My parents don't have the energy that my brother needs now he's so big, so I spend a lot of time playing with and stimulating him. About seven years ago, my dad was diagnosed with ME which hit us really hard because he was in and out of hospital a lot. At home, I'd make sure Dad had the right medication at the right time, help him get to the toilet, everything really. He's a lot better than he was, but is still very tired and in pain, which affects all of us. There have been times when things have just seemed impossible: when they've both been unwell and I have lots of schoolwork. But West Lothian Young Carers taught me to express my stress through music, so I don't hold it in. I have missed out on a lot and I've had to grow up really quickly, but it's made me a much stronger person."Reuse content