My dad was 54 when he started to become ill. At first he struggled with writing, which was very bizarre, and then his arms started to go. I remember receiving a call from my sister saying that he had just gotten really angry about nothing, so it had obviously been playing on his mind. From then on the illness developed over a couple of years, quite slowly to begin with, but it picked up speed once he was diagnosed.
The diagnosis itself took a very long time – the doctors said it could be various things, and they performed test after test, and then he went into hospital for two weeks. The worst thing was knowing something bad was happening, and trying to guess what it could be. It’s always good to know what you’re dealing with, but then we were told that he had motor neurone disease. The prognosis was two years.
It was a relief to have the name and know what would happen, but once you’re told something like that, you know things will only go one way – and not a very nice way. But my dad was thinking mostly about us rather than himself, and a month after being diagnosed he asked my sister and I to look into Dignitas.
This was 12 years ago now and it was still an incredibly taboo subject, but he had seen a tiny, finger-length article about it in a newspaper and remembered it. I wasn’t shocked at all that that was his choice – he was the do-er of our family, the person who did everything for everyone else, so to go from that to not being able to do anything was really difficult for him.
At this point my dad had lost the use of both his arms, and had to be fed and taken to the toilet. His speech was starting to go, and by the time we went to Dignitas he could barely talk. He was given a see-through Perspex board with the letters of the alphabet on, and had to use eye movements to point to letters and spell out words. It wasn’t easy at all and caused a lot of frustration and anger for him, even though he was not an angry person at all. Before he became ill he would always carry the conversations at gatherings and parties, and always had jokes to tell, even if they were sometimes dad jokes! Losing his voice was a bit like losing his identity, and the frustration was unbearable for him.
At the time, there wasn’t anything about Dignitas online, so we had to ring them to find out the information, which was really difficult as most people in their office didn’t speak English. They were lovely and very helpful, but it really added to the stress. Plus my dad’s illness was moving really quickly, which was scary, and added pressure on us to get everything in place in time for him to be able to actually make the journey to Switzerland.
As part of the process we had to gather all the relevant documentation about his illness, including letters and proof that he was of sound mind and not depressed. We had a meeting with our family doctor which was a really upsetting day – he is a very traditional doctor but he didn’t hesitate in handing over the letters, as he wanted to help as much as he could. My dad was only around the fiftieth person from the UK to go to Dignitas, so it was reassuring to know that someone from the medical profession was on our side.
Then we had to run around getting birth certificates, marriage certificates and so on. It was crazy, and probably took around three months from when we started researching it to when we actually went.
Once we had the green light, as Dignitas called it, we were given information about hotels and flights, along with an itinerary of what would happen when we got there. My dad had told all of his family, some close friends and a couple of neighbours about what he was doing, and all of them knew him very well, so they weren’t surprised. It took my mum more time to get her head around it because this was her life partner, and that love is very different to parent-child love. In the days leading up to the trip we had lots of people coming to the house, which was difficult but nice in a way, as people don’t usually get a chance to say goodbye. There were a lot of tears.
It was really difficult for my dad but his sole thing was that he just wanted it done. That’s what pushed him through – the end goal. He sat us down as a family, me, my sister and my mum, to thank us for what we had done. He wasn’t a soppy person who would say “I love you” lots, and while he’d always given us lots of cuddles and affection, he didn’t really use those kind of words. But he did then, and even though he could barely talk, we knew what he wanted to say. It meant a lot to us all.
Then the morning of the trip was almost like going on holiday – we got up early and put our suitcases in the taxi. Dad didn’t say anything at the time but he knew that was the last time he would ever leave our house, and I knew when we came back it would be without him. But we just travelled to the airport like a normal family.
We’d arranged help to get Dad to the gate, and on the flight I couldn’t help wondering whether the air hostesses knew where we were going – after all, he looked so unwell and couldn’t do anything for himself. It’s funny the thoughts that go through your head.
When we landed he was taken off the plane in a wheelchair, which he wasn’t happy about as he’d refused to have one up until then, but he was beaming from ear to ear. He was just pleased that he’d managed to make the journey, and that he had arrived, and it was going to happen.
We checked into the hotel, which was lovely, and had a nice dinner by the lake. The next morning we went to an apartment block, in taxis arranged by Dignitas, to meet Dr Ludwig, the person we’d been in contact with. As part of the process he wanted to meet Dad and speak to him, and we chatted for about half an hour. He made it feel normal and like this was the right thing for him to do, and I remember that he collected teapots – there were shelves and shelves of them. When the conversation was over he wished my dad a pleasant journey and then we were put into another taxi and driven to a different apartment block, where the assisted suicide was to take place.
We had a room in the block, which housed other apartments that people lived in. The room had a bed, a table, a kitchenette and a communal toilet. The man who led us there told us we could stay all day, and if we changed our minds that was absolutely fine – there was no time pressure, we weren’t on a clock. He explained what would happen and my dad was nodding along to everything. My mum kept asking him, “are you sure?”, and my sister was rabbiting away 10 to the dozen, which is what she does when she’s nervous. I was just quiet.
My dad wanted to push on with it. They showed him the medicine he would be taking, along with another medicine that would stop him from being sick, because the taste was obviously going to be vile. My dad indicated that he was ready, and we told him we loved him and would miss him. Then it took place. He was so ill, and his body was so tired, that the process happened quite quickly.
I’m glad we were all there with him: some people travel to Dignitas alone because of the fear of prosecution. That hadn’t really entered my mind until it was over and the authorities arrived at the apartment: they have to investigate as standard procedure. I’m someone who has never done anything illegal in my life, and I wouldn’t even get on a bus without a ticket, so to go from that to this was quite a leap.
My dad had only been dead half an hour when suddenly there were all these strangers in the room talking in a language we didn’t understand, looking between us and the paperwork. They were still human though, and told us they were sorry for our loss.
The whole process is filmed so the authorities watch that back to make sure no one has done anything untoward. We were told to leave the room and when we came back his body had been covered with a sheet and put into a wooden coffin. We could see his body, but I knew he wasn’t there anymore. They told us to say goodbye before we left for a final time, and then it was just us standing outside in a place we didn’t know at all.
You can take the body back to the UK but Dad had been adamant that we didn’t waste any money on that. Instead, we had him cremated, and his ashes were sent back to us in an urn. We had to stay in Switzerland an extra day in case we were needed for questioning, and it was raining, so we decided to do a bus tour of the city. It was so bizarre, really, when I think about it. Then we travelled home, and I remember the person who checked us in at the airport asked if we were travelling with anyone else, as there was obviously someone missing. It was hard but at the end of the day we’d done what he wanted, and in comparison to what the ending could have been like, it was nothing. For people who are terminally ill there is only one end, there is no getting better, and you know there will be suffering, and that the people around you will suffer.
Assisted suicide is a normal thing at Dignitas: they see people of all nationalities and illnesses, with all different reasons. It’s crazy that it isn’t legal in the UK – it would have made the process 100% easier for us if we could have done it here. Travelling to Switzerland is so hard for someone who is terminally ill: my dad could barely leave the house, let alone get on a plane and travel to another country to stay in a strange hotel. Plus he didn’t have all the usual things around him that made his life that little bit easier. And after it happened we were left in a foreign country after one of the saddest moments of our lives, with nothing familiar around us, and the added worry about what the authorities were going to say.
I can’t imagine what it’s like for people who travel there alone. It proves how desperate they are for an end to their suffering, that they will go before they have to, while they are still able to travel, and cut short their time. Everyone wants to stay with their loved ones for as long as possible but if you’re not getting any quality of life, it’s what you have to do.
But if people could do it here, they might not have to do it so quickly – they could have an extra few weeks or even months with the people who matter to them. They could even do it in their house, with their loved ones and all their things around them. Then they’d know that once they’ve gone, everyone would be there to support those left behind immediately, which is what they need.
Then there’s the issue of planning the trip and the stay and what happens after, and gathering all the documentation. How stressful to spend your last days and weeks doing that.
However, I do feel like things are picking up fast, especially with Dignity and all the campaigning they’re doing. Assisted suicide is not a straightforward process, and you have to gather so much documentation that there’s no way it can become underhand, or that people could be forced into it.
It should be offered here on the same basis that it is at Dignitas – for people who are terminally ill, of sound mind, and can make the decision themselves. I just don’t see why we wouldn’t do it, and I really hope things will change soon.