FIRST-HAND : `I've had enough ... I want to die with dignity'

Peter, a multiple sclerosis sufferer, wants the right to end his own life

MY condition deteriorated gradually. I started walking with a stick, then I moved on to a Zimmer frame. Then it reached the stage where I needed a wheelchair, but my wife hated it. She used to cover it with coats, because she couldn't bear to see it. We split up in 1982, partly because she couldn't come to terms with my illness. Some people can't. But after we separated, I realised that I needed someone to look after me.

Alice [not her real name] arrived as my live-in housekeeper. We married, although that ended, too, after three years. She hadn't appreciated just how stressful my condition could be. Eventually, she left, but not before withdrawing every penny from my building society account. After Alice had gone, I found another housekeeper for three years. By then, I needed someone to look after me full time. My eyesight was failing, and I had lost control of my bladder and bowels. I have always been meticulous, and hate having to rely on someone else to wash, dress and feed me. So often people are careless, and spill food on me, which I hate.

When I couldn't find a replacement, I had no other option but to go into a nursing home. When the lady with the tea trolley came round, I would ask if someone could come and help me because I couldn't drink it myself. Nobody would turn up, and an hour later, when she came to collect the empty cups, my tea would be sitting where she left it, cold. I complained to the matron, but in these places, if you are able to voice an opinion, you are a nuisance.

So many times, a care assistant has been in the middle of washing and dressing me, when they'll say: "It's our coffee break now," or "We need to go and attend to someone else," and they'll leave me half-naked. Then, when I am finally dressed, they leave us in wheelchairs around the room, just waiting to die. It's degrading and depressing. That is why I have spent hundreds of pounds advertising for a live-in carer. They would have a home, a salary and no expenses. But I can't find anyone.

One couple who came brought their sunbed and the electricity bill was astronomical. Three months later, they arranged to go away for a long weekend, and didn't bother coming back. The couple after that bred hamsters in the upstairs bedroom, and the smell was dreadful.

Finally, I found someone that I could rely on. John was with me for six months until Christmas, when he decided to take a few days off. In the meantime, I hired Christine, from a reputable nursing agency.

As usual, I had a rest in the afternoon, and told her that I would let her know when I was ready to get up. I called her at 3.30pm. There was no reply. I waited, then called her again. Still no reply. I called every 20 minutes, but it was 9.30pm before she eventually appeared.

With the help of a neighbour, I managed to contact John, who came back the following day. He discovered Christine dead drunk on the sofa. He found eight empty tins of cider, two empty bottles of champagne, an empty bottle of gin and sherry. In three days, she had drunk nearly £80 of my alcohol.

After John left, I had to rely on agency staff. In one week, I had nine different people looking after me. I hate having to be completely reliant on another person, but I have no choice.

It has now reached the stage where I would be quite happy to be made warm and comfortable in bed, then put to sleep, while I still have some dignity. Most mornings, I would be quite happy not to have woken up, knowing what I'm faced with.

I am not depressed, but I do not want to continue living like this. My father is 88, and much too old to look after me. And I am not very close to my only sister. When I hear, as I often have, that euthanasia would be a license to kill, that doesn't apply to me. I know only that it would give me peace of mind, knowing that I had the choice to end my own life.

If I'd known how difficult it would become, I might have ended it myself. More than once, it has crossed my mind that all I need to do is to throw myself down a steep flight of stairs. Even now, I could easily back my wheelchair on to the road in front of a car. But I'm a coward: there would be no guarantee that it would kill me, and I might just end up with a broken arm.

That is why I have made a living will. My declaration makes it clear to doctors that I want no medical intervention to keep me alive. I want to die with dignity. It would give me peace of mind to know that at a certain point, I could say: "I've had enough." I'm not in any physical pain, but the mental pain I suffer from is so much worse.

Interview by Jane Cameron

Have you tried new the Independent Digital Edition apps?
Life and Style
ebookNow available in paperback
ebookPart of The Independent’s new eBook series The Great Composers
  • Get to the point
Latest stories from i100
Have you tried new the Independent Digital Edition apps?
Independent Dating

By clicking 'Search' you
are agreeing to our
Terms of Use.

ES Rentals

    iJobs Job Widget
    iJobs General

    Recruitment Genius: Project Implementation Executive

    £18000 - £23000 per annum: Recruitment Genius: They work with major vehicle ma...

    Recruitment Genius: Chiropractic Assistant

    £16500 per annum: Recruitment Genius: A Chiropractic Assistant is needed in a ...

    Recruitment Genius: Digital Account Executive - Midlands

    £18000 - £26000 per annum: Recruitment Genius: They work with major vehicle ma...

    Recruitment Genius: Web Developer

    £28000 - £30000 per annum: Recruitment Genius: This company provides coaching ...

    Day In a Page

    NHS struggling to monitor the safety and efficacy of its services outsourced to private providers

    Who's monitoring the outsourced NHS services?

    A report finds that private firms are not being properly assessed for their quality of care
    Zac Goldsmith: 'I'll trigger a by-election over Heathrow'

    Zac Goldsmith: 'I'll trigger a by-election over Heathrow'

    The Tory MP said he did not want to stand again unless his party's manifesto ruled out a third runway. But he's doing so. Watch this space
    How do Greek voters feel about Syriza's backtracking on its anti-austerity pledge?

    How do Greeks feel about Syriza?

    Five voters from different backgrounds tell us what they expect from Syriza's charismatic leader Alexis Tsipras
    From Iraq to Libya and Syria: The wars that come back to haunt us

    The wars that come back to haunt us

    David Cameron should not escape blame for his role in conflicts that are still raging, argues Patrick Cockburn
    Sam Baker and Lauren Laverne: Too busy to surf? Head to The Pool

    Too busy to surf? Head to The Pool

    A new website is trying to declutter the internet to help busy women. Holly Williams meets the founders
    Heston Blumenthal to cook up a spice odyssey for British astronaut manning the International Space Station

    UK's Major Tum to blast off on a spice odyssey

    Nothing but the best for British astronaut as chef Heston Blumenthal cooks up his rations
    John Harrison's 'longitude' clock sets new record - 300 years on

    ‘Longitude’ clock sets new record - 300 years on

    Greenwich horologists celebrate as it keeps to within a second of real time over a 100-day test
    Fears in the US of being outgunned in the vital propaganda wars by Russia, China - and even Isis - have prompted a rethink on overseas broadcasters

    Let the propaganda wars begin - again

    'Accurate, objective, comprehensive': that was Voice of America's creed, but now its masters want it to promote US policy, reports Rupert Cornwell
    Why Japan's incredible long-distance runners will never win the London Marathon

    Japan's incredible long-distance runners

    Every year, Japanese long-distance runners post some of the world's fastest times – yet, come next weekend, not a single elite competitor from the country will be at the London Marathon
    Why does Tom Drury remain the greatest writer you've never heard of?

    Tom Drury: The quiet American

    His debut was considered one of the finest novels of the past 50 years, and he is every bit the equal of his contemporaries, Jonathan Franzen, Dave Eggers and David Foster Wallace
    You should judge a person by how they peel a potato

    You should judge a person by how they peel a potato

    Dave Hax's domestic tips are reminiscent of George Orwell's tea routine. The world might need revolution, but we like to sweat the small stuff, says DJ Taylor
    Beige is back: The drab car colours of the 1970s are proving popular again

    Beige to the future

    Flares and flounce are back on catwalks but a revival in ’70s car paintjobs was a stack-heeled step too far – until now
    Bill Granger recipes: Our chef's dishes highlight the delicate essence of fresh cheeses

    Bill Granger cooks with fresh cheeses

    More delicate on the palate, milder, fresh cheeses can also be kinder to the waistline
    Aston Villa vs Liverpool: 'This FA Cup run has been wonderful,' says veteran Shay Given

    Shay Given: 'This FA Cup run has been wonderful'

    The Villa keeper has been overlooked for a long time and has unhappy memories of the national stadium – but he is savouring his chance to play at Wembley
    Timeless drama of Championship race in league of its own - Michael Calvin

    Michael Calvin's Last Word

    Timeless drama of Championship race in league of its own