July 19, 2016
Assisted dying could have allowed Exit Member Gaynor Grainger to say goodbye
Paralysed and ill, Roger Grainger took his own life. Terrified that his wife Gaynor might be implicated, he did it without telling her.
Now she wants the law changed, so that no one else has to die without saying goodbye
After Roger Grainger fell ill with suspected Parkinson’s disease in 2012, he began rapidly losing basic neurological functions until he became completely paralysed down one side of his body. He and Gaynor, his wife of 22 years, had to sell their hugely successful kennels and cattery business and move to a more suitable home that could better accommodate his condition.
As it became clear Roger’s health was drastically worsening, the pair began discussing assisted suicide – and made a pact. Although Roger had stronger views on the subject, Gaynor agreed that, should the pain and struggle become unbearable, she would help him to end his life.
Roger felt that complete paralysis was well on the way, and could not take the risk of not being able to do what he wanted.
“I know there’s a very fine line regarding assisted suicide, and understand the arguments against, but our view was always if you are terminally ill anyway, of sane mind, then it’s your decision, not your family’s or someone else’s,” says Gaynor. “I don’t think it’s anyone else’s business really.”
Roger’s final night
In the weeks leading to his death in March, Roger began asking for sandwiches more often. Gaynor suspects now that her husband, by this stage completely paralysed down his left side, was testing himself. He hated having his food picked up for him or needing to be cut into pieces.
His speech was slurred and he was worried about his swallowing too. Despite the aid of a motorised scooter, a walking frame and grab rails, falls and injuries were more frequent. It was not unusual for him to fall and injure himself several times a day.
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On the night he died, Roger dropped his sandwich three times. “He told me: ‘You do realise, don’t you, that if this hand goes, that’s it for me. I won’t be able to eat, or toilet myself, or do the things that are very important to me’,” Gaynor says. “I told him he had thought that before, but didn’t take it any further. And neither did I. I wish I had.”
Around 18 months previously, Roger had ordered Nembutal online and it had sat in the fridge ever since. He had by then joined the pro-euthanasia group Exit, founded by the Australian doctor Philip Nitschke. Nembutal, a barbiturate, is promoted by euthanasia campaigners as the most peaceful way to die.
Not unusually, Roger often slept on the settee, as it was such a struggle to get in and out of bed, as he did on 17 March. That night Roger used his scooter to retrieve the powder, mix a lethal dose with water and drink it, before laying down to die, three days after his 69th birthday. He did not tell Gaynor what he was going to do.
“It was completely peaceful, he had planned it meticulously. He held his dignity with great pride”
“It was completely peaceful, he had planned it meticulously. He held his dignity with great pride. I’ll never know now whether I would have helped him, but I think I would have done. If he was distressed I would have had to have helped him,” she says.
“Because he was so terrified that my role would be implicated, he did it without telling me. And he had never, ever broken a promise before – we had a deal where I gave my blessing, but not to do it without talking to me – and he did. I’ve always understood the decision, but that’s been the bit that has been the most difficult to deal with.”
The real source of his deterioration
Speaking to i from her home in Stourbridge in the West Midlands, Gaynor, 65, a former teacher, said she finally discovered what Roger was actually suffering from at last month’s inquest into his death, which returned a suicide verdict.
The post-mortem examination showed that Roger had PSP – progressive supranuclear palsy – a rare and progressive condition that can cause problems with balance, movement, vision, speech and swallowing. It is caused by increasing numbers of brain cells becoming damaged over time.
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The PSP Association estimates there are around 4,000 people with PSP living in the UK. However, it’s thought that the true figure could be much higher, because many cases may be misdiagnosed.
“It’s a very cruel disease. He would have ended up with dementia and all sorts of other consequences,” Gaynor says. “I don’t disagree with what he did. I regret immensely that he didn’t talk to me and say goodbye. I lost him far too soon. The law has deprived him, and all who loved him, of additional time and I still feel that, really, really badly.”
The couple, who both have a daughter from a previous marriage, felt there would come a time when no other option was on the table. Movement had become so difficult for Roger that towards the end of his life, it would take him 20 minutes to get from the sofa where we are talking to the wet room a few yards away.
“We could never have gone to Dignitas,” said Gaynor. “A plane trip was out of the question.”
Roger filmed a video explaining his reasoning, which police found and showed to Gaynor following his death. He had also sent an intimate email, expressing his love and asking for forgiveness.
The legal debate
The debate over assisted dying ground to a halt last September when Lord Falconer’s Bill was defeated in the Commons. In a free vote, only 118 MPs were in favour with 330 against the introduction of assisted dying legislation.
There were passionate and heated arguments on both sides of the debate with those welcoming the rejection of the legislation saying the current law existed to protect those who are sick, elderly, depressed or disabled.
Those who are terminally ill, and their loved ones, such as Gaynor, equally passionately disagree. The current law makes anyone suspected of involvement with an assisted suicide open to being charged and prosecuted. In practice few are, but the desperately ill do not care for statistics.
“There’s a huge chasm between what people feel and what politicians say”
Gaynor Grainger
“A lot of people are having a bad death for the sake of a very, very few that might make a bad decision,” says Gaynor . “The pendulum has swung too far. I’m prepared to do quite a lot to bring a new Bill forward again, and write to Lord Falconer to see what he thinks. There’s a huge chasm between what people feel and what politicians say.”
New assisted dying laws in California, coming into effect this month, and in Canada have given Gaynor hope that British politicians may once again return to the issue, and even one day pass a law she believes would never leave someone like Roger feeling he had to die without saying goodbye to the person he loved most.
“I know Roger would be really happy if I played a part in that.”