'My husband just wanted to die...'

“It was one of those freezing nights we had in December,” remembers Jenny. “If he’d gone outside I’m sure he would have died. It was simply horrendous.”

This is all related in a steady voice, bereft of tears, self-pity, bitterness or rancour. Her composure is all the more remarkable when she describes the contrast between the desperate, wheelchair-bound man in front of her and the active, industrious man she married in 1970.

“We met when I was 15 and although we didn’t get together then, four years later we met up and fell in love,” she says.

After a few years living in Australia they returned to their native Poole, had daughter Lisa, and lived happily until one Saturday last September, when David felt ill after a shopping trip.

“He lay on the bed. After sitting him up I could see the side of his face had dropped and said ‘You’re having a stroke’. After a huge battle I phoned up the hospital and they kept him in for the weekend.”

A scan revealed a pea-sized shape in his brain and four days later he returned to their Poole bungalow, resuming their active retirement; doing the garden and tinkering with his beloved vintage cars. Things went well for three weeks until David complained he had no sensation in the palm of his left hand. “He started to lose his words and two days later I noticed his left foot was dragging. He felt ill, so back we went to the hospital.”

By the following Monday David was unable to walk unaided. “They had his latest scan up on the screen and I will never forget it: on the right side there was this huge thing; five by 10 centimetres, right in the middle of his brain.”

An abscess was quickly ruled out and a cystic tumour diagnosed. David was sent to Southampton’s Neurology Unit for a biopsy and draining, which brought some respite from the symptoms but the blackest news for the family. “The surgeon came in and said, half under his breath: ‘We suspect a primary brain tumour’. I just thought ‘Oh, God’.”

The surgeon was horribly correct. David had a glioblastoma at grade four, the gravest diagnosis.

“I asked if it was operable and they said no, it was too deep, so I asked how much longer had he got. The doctor said that without radiotherapy, two to three months, with it, up to a year. And that was it.”

As David’s stitches were removed he was told the draining device could be left in situ to prevent fluid build-up. “He just turned to me and said ‘I’ve got three months to live and I want to go now’.”

Jenny understood. “He’d always said that if he had a terminal illness he’d go out on a boat into Poole harbour and go over the side. That was always our thought, that we would never want to go on because if it’s final, what’s the point of hanging about?”

But, as they were to discover, for people in David’s situation your life swiftly becomes the property of the state. “If he was mobile I think he would have taken his vintage car to the New Forest and finished it there,” says Jenny. “But he couldn’t.”

David’s determination to control his own fate was both moving and terrifying. “We had all these nurses saying ‘you can go back home now’ and he was saying ‘I don’t want to. I just want to die’. He refused radiotherapy and didn’t want the tumour drained; he wanted to go as quickly as possible.”

David repeatedly pestered medics for tablets or lethal injections. “He was constantly pleading with them and they were saying they couldn’t do it. And all we kept hearing about was Harold Shipman, that wretched man!”

Jenny formed the opinion that before Shipman’s murderous spree became public, doctors had more leeway to withhold life-prolonging treatments or to gently assist a patient’s passage from life. “But then we’d hear: ‘Since Harold Shipman things have been tightened up’.”

The hospital persisted in trying to get David home; offering physiotherapy to show him how to manoeuvre himself in the downstairs room now prepared for him. “He had a wheelchair, two commodes, you name it. And he didn’t want any of it. He didn’t want to come home. Being there must have been a torture for him, seeing the garden he couldn’t look after, the car he couldn’t drive. But no one thinks of that.”

Despite the help of palliative care nurses, David became increasingly frustrated. “He’d flail around and he was partially paralysed, his speech was going. He cried more than he didn’t cry. Then he started asking me to put him out in the garden.”

Did she consider doing this?

“I did. I thought how I could do it practically but it’s against your instincts; a person should die in comfort. I also thought; ‘You’re going to get arrested and charged with God knows what if you do that so imagine what effect that will have on Lisa’.”

Over the next 12 days David instructed Jenny to put the house on the market and get him to the Dignitas suicide clinic in Switzerland. I thought about it but how the hell do you transfer someone who is completely paralysed down one side? Then there’s the expense of all the nursing care, even if you could sell the house.”

Eventually he was taken into the Christchurch Macmillan Unit. “He was in a very dark place, then. One day Lisa asked if he’d like to go for a ride in the car. He asked her to take him to Mudeford Quay and just tip him over the edge.”

Normally cheerful and easy going, David was placed in a single room because he became so difficult to deal with. “One day I went to kiss him and he said ‘Get away, from me, I’m a smelly, dirty old man and both of you go; forget about me and get on with the rest of your lives.’ That was so hard but he didn’t want anyone to see him like that. Lisa was really strong but I used to stand in the car park and sob my heart out.”

Despite having nothing but praise for the Macmillan Unit, which did its best to give David a happy Christmas, Jenny realised that by Boxing Day he was deeply depressed.

“He was very, very private as regards going to the toilet, he absolutely hated having any help. One day he was in the bathroom. He insisted he was OK but he wasn’t so we had to help him and change his clothes and he ended up sobbing, saying; ‘I’m so embarrassed’. That day he sobbed for the whole of the visiting time.”

By New Year’s Day, David was bed-bound. “He’d try and phone me on the mobile but I’d dread it because I couldn’t understand him and have to ask the nurse to translate what he meant.”

In what was to be his final week David was put on a pump to administer his drugs and then, as doctors had predicted, he started having fits.

“It was the most awful thing to see and I never, ever, want to see anything like that again. I felt how cruel can they be, to have allowed this in a human being? You wouldn’t treat an animal like that but that’s how we treat humans.”

The classic medical response to all this, of course, is to say that David’s mind had become unbalanced because of the tumour. Was he of sound mind?

Jenny is adamant. “Yes. He was depressed but he had something to be depressed about, it was an understandable reaction. He completely knew what was happening; he wanted to end his life and no one would let him.”

Jenny makes her next point emphatically. She wants the people with the power to do something about these situations to know this: “He suffered absolutely dreadfully, we all did, all the family. As much as I didn’t want to lose him I thought this would all have been so much kinder if it had ended the day we saw that huge, great lump in his brain or when we got the confirmation. To be told you’ve got to see this thing through when you don’t want to is inhuman."

David died peacefully at the end of January. Jenny was relieved but angry at the trauma they all endured.

She has no time for what she describes as “the God people” who “don’t see the 24-hour suffering” and who oppose assisted suicide, or for the popular view that being able to care for a person in David’s situation can be uplifting.

“I was glad I had him home for the 12 days, at least I’d tried, and if he’d never come home I would have regretted that I hadn’t tried.” she says. “But I don’t think there was anything uplifting about it: it was the most horrendous thing I’ve ever had to go through and I hope I never have to go through anything like it again. It had an awful effect on the family. I can’t think I’ll ever look back and think ‘wasn’t that great that he suffered so much before he died’. Because he shouldn’t have.”

• All names have been changed.