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 CameronReuse content