Our mother began to notice that her eyesight was weakening with something you could describe as similar to a cataract. She described it as if someone had drawn a net curtain across her eyes. Her appointments with the hospital were routine and a decision was made to do a retinal peel to improve her sight. This is fairly routine with the elderly, she was 71. The first operation on her left eye was successful but provided little improvement but the second operation on the right (stronger) eye was a disaster. She woke to zero vision which the specialists felt was a reaction to the operation, then admitted it was an infection, but much later admitted they did not know why her vision had been lost but agreed is was permanent. However now her sight was severely failing in her left eye and again the specialists were at a loss and eventually reluctantly referred her to Moorfields Eye Hospital. Through a number of visits they tried every test to determine the level of eye activity and confirmed that the right eye was a total loss and they continued to monitor the degradation of the left.
When she began to realise, shortly after the operation on her right eye that she may never see properly again she said to us that without sight she would not want to live. She was an active skier, tennis player, walker, gardener and loved the mountains. Having seen her own mother suffer with a terminal illness living in Switzerland and how calmly and easily she was able to decide how she was going to die, our mother felt that she would like to be fully in control of her life in the same way. This was the first insight into how determined and strong our mother actually was.
She persevered with the advice and tests performed by the specialists but there was no improvement and eventually the C word was mentioned. By this point the sight was now barely 10% of what it was. She had pushed herself to beat these challenges as far as she could but her own body was now fighting her. It was suggested that a cancer was causing her body to attack itself and starting with the eyes it was something they had not seen before and now her body was failing too. Sciatica, involuntary nervous twitching, and difficulty breathing were some of the symptoms. She was by now adamant she wanted to die. We contacted Dignitas.
Throughout this time we fought with her, argued with her. Trying to persuade her that she could still live without sight but the cancer was now proving to be more and more destructive. We had care laid on, 7 day assistance and more but even this was not enough. We knew she was right and continued with her application to Dignitas.
She was not losing her mind, although at times you might have thought she had but she was dying. With the same symptoms I’m sure I would have difficulty at times keeping my head. With the help of a psychiatrist we were able to get the necessary paperwork together to satisfy the application. If we had not helped her with this, we are sure she would have killed herself and we believe she tried, twice. She was also very aware of the legality and she made it very clear that she wanted to die to everyone who she came in contact with, something we would later regret. She later told me that she was trying to protect us even now and that is was her wish and that she was not coerced. I love you too, mum.
After two years of the NHS merry-go-round our mother was almost completely bed bound and the doctors were saying they were convinced the cause was a cancer but then refused to give us the final scans as they believed she was going to use them in order to die in Switzerland. We asked for them under the Freedom of Information Act but were refused as the Suicide Act could be used to overrule the Freedom of Information Act. She needed these scans, more importantly so did Dignitas. She was crushed! Dignitas could not proceed without the scans even though her wish to die was because of her loss of sight not Cancer – a sight that would never return. She was now vaguely given weeks to live.
We contacted everyone for help and through Friends at the End we found another agency in Switzerland, Lifecircle.
Lifecircle were fantastic – run by Erica Preisig, previously a doctor at Dignitas. She was able to look at the whole situation and saw our mother for the unique person she was and her unique predicament. They were able to accept her and her reasons for dying. In their application to the local council they presented the case together with the cancer and mainly her now complete and permanent loss of sight and it was accepted. Our mother was visibly happy.
In Switzerland you can choose to die at home in your own bed, but elsewhere you can’t. At Lifecircle they were professional and kind, and made my mother feel special and the centre of attention. I can honestly say for two years I had not seen my mother happier. She was surrounded by her whole family, normally scattered across Europe but they were all there. She had three amazing days in Basle with us. These were very hard days for me but I was supported by her strength and resolve, we all were. She passed away peacefully, without pain, surrounded by her family. This is what she wanted.
We cannot thank Lifecircle enough for their help.