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Hugh Marriot : story of a selfish pig

Hugh Marriot is the author of 'the Selfish Pig's guide to caring' a book that is popular with carers for its honesty and humour. When Hugh's wife Cathie began to show symptoms of Huntingdon's Disease they decided to face the illness head on in quite a remarkable way. Nine years later they had visited 40 countries, sailed around the world and Hugh was on his way to writing the book that resonates so much with carers.

 

Symptoms

Hugh and Cathie met when they were living in London, Hugh a journalist and Cathie a researcher. In their early days together they shared a dream of buying a boat and sailing to the Mediterranean, but as the years passed life got in the way – marriage and bringing up three children. Over time, Hugh noticed that Cathie was developing symptoms such as slurred speech and involuntary movements.

"Cathie's doctors were saying they thought she had Huntingdon's, but we never knew for sure as there were no tests back then so they couldn't prove it." Hugh and Cathie began to face up to the fact that Cathie had a serious disability. "It became clear to us that we had to live our lives whilst we could, and it seemed right to revive that old dream of having a boat."

Once their youngest child was off at university, they sold their house, bought a boat and set sail on what became a nine-year voyage around the world. They crossed the Atlantic to the Caribbean where they stayed for over two years, sailing from island to island.

All at sea

Gradually, Cathie became less and less able, and within five years Hugh was caring for her full time. "Believe it or not, being on a boat is actually an ideal environment for coping with a disability. Everything is easier to deal with. For example, a boat is designed so you don't fall over, there are grab rails everywhere and if you do fall you don't fall very far. The other plus is that even if all you can do is sit in one spot, the view outside the window is always changing. It's also very cheap living on a boat," says Hugh. "You don't have any phone bills, we mostly lived off the food we caught from the sea and you don't need many clothes!"

From the Caribbean they sailed through the Panama Canal, across the Pacific ending up in New Zealand and Australia before eventually heading home via the Far East, India and the Red Sea. "Once we got going, we kidded ourselves it would go on forever," says Hugh, "but there came a point where even our kids were saying enough's enough."

Fight

Once back on dry land they set about building a life and getting the support they needed to cope with Cathie's disabilities. "I'm very lucky compared to some," Hugh concedes. "I ended up getting all the support I asked for, but I had to fight for every single bit of it." Hugh was able to manage his caring role with a Direct Payment to pay for support from a care worker twice a day and equipment such as a special bed and a hoist.

"I did well out of the system, but only because when I phoned Social Services I was at my wits' end and couldn't cope any more. The problem is, when you're really low you don't have the energy to fight for it. And you really do need to fight."

Selfish Pig

One of Hugh's ways to get a break from caring was to write and that was how 'The Selfish Pig's Guide to Caring' was born.  The title of the book might seem strange to some, but carers will understand immediately when Hugh explains who he means by 'selfish pig'.

"If you're a carer and resent the fact that you no longer have a life of your own, and find that this makes you resent the person you're looking after and sometimes (though you never admit this) want to push them down the stairs, and then wake up in the middle of the night and wonder what's wrong with you for thinking these things, and come to the conclusion you must be a selfish pig and believe you're the only person in the world who feels this way... then it's YOU."

The book is written from a carer's point of view and touches on many of the conflicting emotions and feelings carers experience. "It was very hard to write," says Hugh. "I kept thinking was I being unfair on Cathie. By the time the book was done, Cathie had lost her ability to read, so she hasn't actually read it. However, she knows about the book and that it involves her, and she's very proud."

Needless to say, the response from carers has been very positive. "I've had some amazing letters from other carers," says Hugh. "I had one from a man who at first sounded quite cross. He said 'I've sat up half the night with this book of yours and I have to keep taking a look at the spine to make sure I didn't write the bloody thing myself!'" High praise indeed!

"The Selfish Pig's Guide to Caring: How to Cope with the Emotional and Practical Aspects of Caring for Someone" by Hugh Marriott is available to buy from all good bookshops.

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