Life after caring, Jane Nicklinson’s story

In case you missed this moving interview in this Monday’s Independent, read the story of Jane Nicklinson, who was a full-time carer for her husband, the assisted suicide campaigner Tony Nicklinson. Here she talks about her life after caring. 

Jane Nicklinson: ‘I can’t deny it. It’s nice to be able to go out when I want to’

The Monday Interview: Since 2005, Jane Nicklinson’s life has been consumed with caring for her husband. So what happens now? Nina Lakhani reports

(Read the article, and the insightful comments from other carers, on The Independent here.)

It is not easy to admit feeling relieved that the love of your life, your soul mate, has died. But that is exactly how Jane Nicklinson feels about husband Tony Nicklinson, the assisted suicide campaigner who died of natural causes six weeks ago.

Mrs Nicklinson understands that she might come across as callous or uncaring, especially by those who opposed her family’s very public battle to change the law so that locked-in syndrome sufferer Tony could be legally helped to end his life. But for anyone who has cared for a loved one with an intolerable terminal or degenerative condition, Mrs Nicklinson may just be articulating what many find too difficult to admit.

“It’s really hard living with someone when you know all they want to do is die and there is nothing you can do to make it better for them, absolutely nothing,” she says. “You feel really helpless knowing that the man you love is in there, but there was nothing I could do to make his life any better. That’s where the relief comes in.

“It was because I love him that I helped him, to me it would have been selfish not to. But yes I am relieved; it does feel like a huge weight has been taken off my shoulders. He’s not suffering, and I can’t deny that it’s nice being able to go out when I want to and not be constantly checking my watch.

“Two days after he died, some friends came over and took us out to dinner. That was the first time I’d been out after dark in four-and-a-half years, and it was lovely to get out,” she said.

Over the past two years Mrs Nicklinson, 56, has become a reluctant public figure as her husband’s legal battle to end his oppressive life was played out in the media. He died in August, aged 58, a week after the High Court rejected his bid to change the common law defence for murder. He was “knocked for six” by the ruling, even though his lawyers expected it, contracted pneumonia and died after refusing antibiotics and food.

Mrs Nicklinson’s attempt to continue his case has been turned down by the High Court, but she is not ready to give up and plans to appeal. “It is hard to let it go, it is a huge part of my life and I want to see it through because I definitely think that’s what Tony would like – it was never just about him,” she says.

The couple were together for 27 years and led a charmed expat life in Asia and the Middle East until Tony’s catastrophic stroke in June 2005. Forced to return for medical treatment, Jane chose Melksham in Wiltshire only because she had good memories of working in nearby Bath many years earlier, and her family are originally from the West Country. Until now she has had little opportunity or drive to go out and meet people, to build a life for herself.

“It was so damn complicated to go anywhere, getting the right carers in, so I didn’t really go out much at all,” she says. “That’s going to be difficult, getting myself a life here. It is really daunting because Tony was always the outgoing one and I was always the shyer one of the two. There was a certain amount of role reversal over the past few years and I think I became more confident. But it is still daunting.

“I haven’t worked for 26 years, so I haven’t got a clue what I am going to do. There will be something out there, I wouldn’t mind working in a shop, get me out meeting people, bring in a bit of money, no responsibility. No more caring; I’d rather be on the breadline than be a carer.”

It wasn’t just the lack of opportunity that kept Jane locked in as well as her husband; she lost the will to live in many ways, existing only as Tony’s carer. “We had a really happy marriage before Tony’s stroke, we had our own little things but we spent an awful lot of time together,” she says.

“But then I became his carer more than anything else; he was alive but he was and he wasn’t, and that’s why I grieved for him seven years ago, I lost him then. Very early one day after the stroke, he did tell me he wouldn’t mind if I went out and found someone else so he obviously did think about that, but there was no way I would. But it was lonely, not having someone to talk more than anything, and no one to cuddle.”

Mrs Nicklinson denies having been depressed, though mental health problems are not uncommon among carers. “I was a bit like Tony, just desperately unhappy. So no I don’t think I was depressed, but I was unhappy, bored, miserable. I could function, but I had lost the will to do things, I didn’t care about how I looked any more. I know it sounds awful but there is a huge amount of relief now.”

So what will she do with her new-found freedom? “Shopping. I’ve been shopping a lot,” she says. “All I had was a pair of jeans and a couple of T-shirts that still fitted me, as I could never see the point in buying stuff I would never get to wear. I’ve put on a huge amount of weight during all these years of sitting around, so I’ve been out and bought new clothes, I am beginning to care about myself again. I am starting to visit people – I’m off to spend a couple of days with my sister in Cornwall.”

This weekend, she went to a reunion with old friends, girls she did her nurse training with in London around 30 years ago. They had lost touch long ago, but contacted her after seeing her on TV, and the group headed to Dorset.

She has also agreed to give a speech in Scotland next month, appearing alongside Ludwig Minelli, founder of the Swiss euthanasia clinic Dignitas.

“It’s only five minutes, but I’m sure Tony’s laughing his head off up there at the thought of me doing public speaking. I used to hate the media work but I’m getting quite well known.”

Mrs Nicklinson is one of life’s copers. “I am OK. Perhaps things will hit me later on, after Christmas, but I think I’ve coped with it all really quite well, but that’s just me, the stiff upper lip I suppose,” she says.

There is talk of a rugby event being held next spring in Sharjah, the United Arab Emirates, where they used to live, in Tony’s memory – he was obsessed with the sport. That could be her first holiday in eight years, a formidable prospect without her husband.

And though she still laments the loss of her past expat life, Tony’s death has forced to close that chapter too. “I do miss it terribly and for a long time I used to think about going back one day, but it’s been too long now, it would never be the same.”

So there are no grand plans, just pleasure in simple things. “You’ve no idea how odd it was to have a carer in your sitting room all night, every night… I could never just dash out to the loo starkers in case they were in the hall. I feel guilty for saying it, but I do feel relieved.”

A right to die? cases in the courts

* Tony Nicklinson’s case was heard alongside that of “Martin” – another British man with locked-in syndrome caused by a stroke. Martin, 47, is trying to force the Director of Public Prosecutions to amend the guidance on assisted suicide so his lawyers or a doctor could help him to travel to the Swiss clinic Dignitas without fear of prosecution. He lost his initial bid, but Martin was last week granted permission to challenge the decision in the Court of Appeal – a right denied Jane Nicklinson, who may appeal that decision.

* The Nicklinson family’s lawyers have also taken on another case – a woman who wishes to pursue Tony’s claim to extend the common law defence of necessity to assisted suicide. The High Court is aware of the woman, but so far no details have been made public.

* In Ireland, a constitutional challenge against the country’s prohibition on assisted suicide has being launched by Marie Fleming and her partner Tom Curran. Ms Fleming, 59, a former law lecturer, suffers from multiple sclerosis and receives full-time care from her partner, a well known right-to-die campaigner. She argues that Ireland’s 1993 law which decriminalised suicide is unconstitutional, because it discriminates against severely disabled individuals. The current law means any person who aids, abets, counsels or procures the suicide of another person faces arrest and a prison sentence of up to 14 years; police must investigate every suspected case of assisted suicide.

* The Irish case is similar to one in British Columbia, Canada, where the Supreme Court ruled that the absolute prohibition on assisted suicide was unconstitutional because it discriminated against severely disabled individuals who cannot end their own lives. While the June 2012 ruling has gone to parliament to consider a change in the law, the court allowed one of five claimants, Carol Taylor, who has a terminal neurodegenerative disease, to be helped to die by a doctor if she chooses. The key difference in the Irish case is that it argues for a life to be legally ended with the help of a husband, not a doctor.

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