THE experience of watching her father die from Motor Neurone Disease (MND) left a lasting impression on Judith Wainwright who is now an advocate for voluntary assisted dying.
She saw how the fit and vital former RAF man was gradually taken over by this incurable disease, which attacks nerves in the brain and spinal cord, eventually stopping muscles working.
The agony of seeing her proud and resourceful father meet his inevitable end has compelled Judith into campaigning for a change in the law to offer terminally-ill people a choice of Voluntary Assisted Dying (VAD).
English-born Judith — who has lived with her partner in the Clough area for over 30 years — volunteers to help get the message out for End of Life Ireland, which is campaigning for a change in the law.
There’s major moves to have the law changed both in the UK and the Republic of Ireland.
Baroness Meacher’s Assisted Dying Bill will soon get its second reading in the House of Lords and the Dáil has set up a special committee of 12 TDs to recommend the best route to progress legislation following widespread support for The Dying with Dignity Bill 2020.
While Judith’s father Peter died over 30 years ago, the experience of what he and his wife Muriel went through remains painful for her.
“My father was diagnosed in 1986 and, at that time, very little was known about Motor Neurone as it was quite new,” she explained.
“It really is an awful disease. To watch a fit guy, a man who had been in the RAF, who was always on the go, to change before your eyes, is just horrible.
“He was a man who couldn’t sit still and was always out in his garage tinkering at engines. When he realised he had MND, he went on as long as he could to keep walking but, eventually, he had to use a wheelchair. He only weighed six stone when he finally passed.
“It was so tragic. How he spent his final days is something that sticks in your mind. It’s just such a horrible thing and a horrible way to go.
“The times he said to me that if he were an animal, he would have been put out of his misery.”
While pneumonia eventually ended Mr Wainwright’s life at the age of 79 in February 15, 1990, he still retained his ability to speak and passed away in hospital.
Judith continued: “He was lucky in a way as Motor Neurone sufferers lose their voice and then everything just goes downwards.
“That was something we all appreciated as he could still talk to you and tell you how he was feeling, which is not something that many MNS sufferers can do. They also lose their ability to swallow and have to be fed intravenously, but he wasn’t like that and kept his voice to the end.
“He would say to my partner, ‘If I had a gun, I would shoot myself, but I can’t’.
“If he could have taken something which would have allowed him to pass peacefully way in his sleep, he definitely would have done that. He often said he wished somebody would do it but, of course, nobody even dreamt of doing it.
“I know for a fact that if he had the opportunity to die with dignity in his own home, he would have done it.
“We all felt a mix of emotions when he passed, but particularly anger, especially my mother, who is also an advocate for those who are terminally ill to have the choice not to spend years suffering.”
Judith, who lives at the Blackstaff Road and is secretary of Saintfield WI, became involved with End of Life
Ireland 18 months ago after she posted a comment in support of Voluntary Assisted Dying on its Facebook page.
“I was asked to tell the story of my father in a video post and then I started to become the group’s Northern volunteer as it is a voluntary group,” she explained.
“We are all just very interested in the hope that we will be able to alleviate the pain of people who are terminally ill.”
Judith hopes that by working with End of Life Ireland, the law will be changed in the Republic, and then eventually in Northern Ireland, in the same way that same-sex marriage and abortion legislation was introduced.
She realises that assisted dying for terminally ill people is a very controversial subject.
“I think that as Christians we should take the opportunity to allow someone to die with dignity,” she said quietly.
“I understand that there will be quite strong feelings about this, similar to the abortion issue. We don’t force people to have abortions but that’s their choice and, for many women, their faith is so strong that they would never consider it.
“It’s a bit like abortion, as not every woman would want an abortion and not every doctor would perform an abortion and that will be the same for assisted dying I feel. But at long last the British Medical Association has taken a neutral stance as they used to be previously against it, which is a step in the right direction.”
Judith is also aware that for many people, having end-of-life conversations is unwelcome and uncomfortable.
“For some people, it really is a taboo subject,” she said. “At the end of the day, the family don’t always know what their loved one’s wishes actually are. It is beginning to be slowly more accepted but I think it’s something we should talk about as it’s going to happen to us all.”
Judith says that it is important for her to campaign for a change in the law in memory of her father.
“I would really like to help somebody, particularly for my father as he couldn’t take advantage of something like that. By campaigning at least, I think I would be doing something positive. I feel quite strongly about this and it’s really important to me,” said Judith.
“I’m 71 and coming up to the age when my father was diagnosed, you just think that time is precious and you don’t have that many years left.”
Judith is asking people who supported Dying with Dignity to lobby their MLAs and MPs.
Anyone who would like more information about the campaign can contact Judith at Judiwainwrighteoli@gmail.com.