‘Mum wanted to go out on her terms: no hospitals, no suffering and (if possible) no pain’

By Alexis 2 weeks ago
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When Joseph Wilson’s mother Sandy was diagnosed with an incurable illness she wanted to enjoy the months she had left – and choose her time to die. Joseph explains how they fulfilled her final wishes 

 

I remember thinking something wasn’t right when our neighbours reported seeing my 20-month-old daughter Elsie by the front gate, alone. My mum Sandy was babysitting while my wife Daisy and I were at a wedding, and she had run inside the house while leaving the gate open to a busy road. She was 66 and had always been brilliant with Elsie. Daisy and I took it as an honest mistake and decided not to say anything.

A few weeks later, in June 2016, Sandy was admitted to A&E at Oxford’s John Radcliffe Hospital convulsing and vomiting in my arms and begging for the pain to stop. (I’d called her Sandy for as long as I can remember – it had been just the pair of us since I was seven and we were the best of friends.) I had been with her for the previous two days as we went to doctors’ appointments and waited to see specialists, but the headaches had got unbearable and I made the decision to drive her to A&E. Poor Sandy – that was one of the worst moments of the whole thing.

A few days later we were sitting with Mum’s elder sister Norah in the neurosurgeon’s office as he told us rather grimly how he didn’t believe in giving anyone false hope. Sandy smiled and asked how long she had. He said three months, at the most. The tumour, a glioma, was extensive throughout her brain and the scan in front of us illustrated this. Sandy turned to Norah and with her characteristic nonchalance said: ‘So let’s get out of here and have a party!’

Back on the ward I gathered my thoughts for a moment in the bathroom. As I returned Sandy and Norah were speaking. I’ll never forget the image of Norah nodding with tears in her eyes. Sandy was asking her to look after me.

Norah and I took turns living with Sandy – I would do three or four days, then Norah would do the same. We cooked, booked appointments with doctors and drew up a table for the week’s pills. So many pills…but they were working and she wasn’t in pain any more.

It was lovely to be back in that house. I hadn’t spent more than a few days there since I was a teenager. My family and I are based in London but being back in Oxford that summer was a special time. Golden sunlight would pour into Sandy’s bedroom as she lay there with the window open, letting the breeze fill the room. ‘Look at that light, Jojo.’

She decided she didn’t want to see anyone. Why turn the house into a waiting room for goodbyes? She wanted to potter, water her plants, make a cuppa, sort out her affairs, eat good food and watch telly. We would dance to Gerry Rafferty and Fleetwood Mac, eat lots of roast potatoes, hug, cry and watch films like Die Hard on repeat. The world outside felt strange: so many icons were dying that year – Bowie, Leonard Cohen, Prince – and it seemed that most people couldn’t wait for the year to end. Yet there I was losing my mother, and we were having a lovely time.

I am a musician and after leaving the hospital that day of the diagnosis I got back into my car and started recording song ideas on to my phone. It was a strangely creative time. Sandy would ask to hear some of the music but I had nothing to play her yet; they were just hummed tunes and lyrics. When I listen to those recordings now I can hear her pottering about in the background.

My writing partner Tom and I are in a duo called Solomon Grey and have been working together for over 15 years. While everything was happening with Sandy, we got an album deal with a major label and secured a job composing the soundtrack for the BBC One drama The Last Post. Sandy had always been our most fierce supporter but she was my mother so she worried about me. It felt amazing for her to know that work was sorted for the foreseeable future.

 She didn’t want to see anyone. Why turn the house into a waiting room for goodbyes?

From the start it was clear to anyone who knew her that Sandy didn’t want to go into a hospice to live out the end of her life. She didn’t want anyone looking after her. She wanted to go out on her terms: no hospitals, no suffering and (if possible) no pain – it was just the way she was. People describe incurable illness as a narrowing corridor, slowly going towards this inevitable end. And others describe assisted suicide as a door appearing on the side of that narrowing corridor. An option where there wasn’t one before. And that’s what she wanted.

I found out later where she found the morphine; she had cared for one of her sisters as she died from cancer and had left it at the back of the medicine cabinet in her bathroom. It was a large amount and she wanted to take it and die peacefully at home in her bed. I can understand that. It was her choice. Norah was there that night and she rang me in the morning. Daisy and I listened intently as Norah, concerned for her sister, opened the bedroom door, and whispered to us down the phone. ‘I’m walking into her bedroom, she’s in the bed, she’s very pale, I think she’s…oh…no wait…she’s snoring.’ There was a rustle in the background and Sandy’s exasperated voice shouted, ‘Oh, for f***’s sake!’ Turns out, killing yourself can be a lot harder than you might think.

It was then that the idea of Dignitas came to the forefront. It is the only place that offers assisted suicide for non-nationals, Sandy’s condition was worsening and she had a limited time left. She had mentioned Dignitas before but the cost and lack of information had made her put it to the back of her mind. Now, during the recovery from the morphine overdose, Dignitas seemed the only viable answer.

She started communication with the Swiss clinic and began gathering the official documentation needed. Dental reports for registering the death, wedding certificate, divorce certificate, a letter from the surgeon stating she was still capable of sound judgment. One of the hardest things to obtain was a ‘certificate of domicile’ to prove her place of residence, which had to be stamped by a public notary. She had been warned that this could be tricky to acquire because of notaries having differing personal views on assisted suicide but she managed to get one in the end. Then there was the huge financial cost. I keep remembering Sandy saying how silly it was. ‘Why do we have to spend all this money, and why do we have to go to Switzerland?’

Amid all the paperwork, the next two months felt like a celebration of still being together. We would tiptoe out of the house when the coast was clear to avoid bumping into neighbours and we would drive around the Cotswolds listening to playlists of her favourite music and enjoying the beautiful summer. Every Sunday, Daisy, Elsie and Norah’s husband Uncle Erik would join us in the house for a meal of Sandy’s favourite food and any particulars she requested. (‘Chocolate hazelnut meringue?’) The steroids were making her sleep most of the day and accounted for her huge increase in appetite. Her friends sent ice cream, Mexican and Indian food and her favourite dumplings. ‘Something crispy, something garlicky,’ would often be the request from the top of the stairs.

Finally, after two months, she got the green light from Dignitas. Only a small number of people knew that we were going and there were no goodbyes, but that was what she wanted. We needed to take something to put the ashes in and Sandy said she wanted us to put her in a Chicken Cottage takeaway box (we didn’t). It still makes me laugh thinking about my vegetarian mum coming back in that. She always had a dark sense of humour.

When the day came to leave for Switzerland, Sandy, Norah and I drove to the airport and made our way with Sandy in a wheelchair to the gate. A few hours and an extortionate taxi ride later and we were in our hotel room waiting for the doctor to come for the first of two checks before the final visit to Dignitas. Everything was in order and he was happy to proceed. He kept asking if Sandy wanted to go through with it. She was so sure. She wanted it to happen as soon as possible.

On our last evening together we decided to go for fondue. Our last supper. A banquet of cheese. Perfect. Afterwards, we sat in our room and watched the Brownlee brothers win gold and silver in Rio while we ate Swiss chocolates. Sandy turned to us and said, ‘I am so content, you know.’

That evening I held her and tried to remember as much as I could about her. I still think about that now. Just holding her.

We got into the taxi the next day and giggled the whole way as the sat-nav kept saying ‘ausfahrt’ (German for exit) over and over again. My mother loved a fart joke even on her death day.

We came to the famous little blue house where we were greeted by two volunteers and made our way inside. Sandy took the first vial of liquid pretty quickly. It lines the stomach so you can keep the second rather sour tasting liquid down. You have to wait half an hour in between so we walked around the garden while we waited. After a bit of debate Sandy decided she wanted to sit on the sofa inside and Norah and I sat either side of her, holding her hands. The volunteer asked Sandy for the last time if she was sure she wanted to take it and she quickly said, ‘Yes.’ I did a silly wave and a goofy goodbye and she giggled and we all hugged and kissed.

On our last evening I held Mum and tried to remember as much as I could about her

One of our family stories is of me as a child asking if everyone was happy, one name after the other. ‘Erik happy? Norah happy?’ And so it would go on before the final statement ‘Jojo happy, everybody happy!’ It became standard practice to retell this story and embarrass me at any opportunity. As Sandy took the last vial and slipped away into sleep between Norah and me, I held her in my arms and said, ‘Sandy happy.’ We stayed like that for some time, and then she was gone. I loved her more than anything in the world and I had always had her in my life.

I know some of you disagree with assisted dying – and I know there are circumstances where vulnerable people need to be protected – but I believe each case should be judged individually. The doctor said she had a matter of weeks. It makes no sense to me that she couldn’t make that decision to die at home in her own bed enjoying that golden light and breeze. I honestly believe that a change is coming and that one day it will be possible for people in Britain, in certain situations, to end their lives without having to travel to Dignitas. I hope you can understand Sandy’s story and take it as a son helping his mother, the one person he owes everything to.

Now we have finished the new album and it tells the story of this experience. Saying goodbye and celebrating our last bit of time together. It was a positive thing for me and my family, and hopefully this record is something she would have been proud of. Shame she never got to hear it, but ‘Sandy happy’, and that’s all that matters.

Source : http://www.dailymail.co.uk/home/you/article-5302091/amp/Mum-wanted-terms-no-suffering-no-pain.html

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