And So He Stayed With Us

Gabriella Dunn writes:

In 2011 my husband was diagnosed with Progressive Supranuclear Palsy. This is one of those illnesses for which people such as Anne Turner, whose death was portrayed in a BBC documentary, have sought assisted suicide.

It never entered my husband’s head that he would like to die early. To the contrary, he set about doing all the things he could possibly do to live as long as possible and I helped him. We had a young daughter, we loved each other very much and we wanted to be together for as long as possible, come what may. It never entered either of our minds.

But a point came when that changed. My husband had grown up children by a previous marriage. They loved their father very much. They had absolutely nothing to gain from his death materially and they also were not going to have to be his carers. However, each, in their own way, set about talking to their father about the possibility of assisted suicide. I believe that as young people they simply could not understand how a man, who had been fit and healthy all his life, would want to endure a terrible illness, and showing him that they were willing to help him end his life, seemed to them the compassionate thing to do. They almost wanted to alert him to just how bad it was going to be and protect him from this.

These conversations caused my husband considerable anxiety. Although he had never thought about assisted suicide before he started to seriously consider it. Maybe he felt that it was going to be too painful for us to watch him grow ill, maybe he felt like he was going to be a burden. He was a man who had lived his life for other people and if he felt other people would benefit, he would be prepared to die. These conversations occurred at a time when our relationship was starting to have some difficulties and they produced a period of distress for both of us.

Choice is presented as a neutral act, creating an opportunity for those who want it, but not impacting on those who don’t. This is profoundly false. In my husband’s case the introduction of the element of choice introduced the possibility that life, including his own life, was not of value in itself and this was confusing and distressing.

If the choice of assisted suicide is presented, our relationships at the end of our lives and the way we end our lives will profoundly change.

As it stands, the elderly might sometimes feel a burden on their loved ones but accept their help with humility and gratitude, trying to reciprocate, where they can, with love. The loved ones accept these ‘burdens’ as an inevitable part and sometimes trial of life.

But what happens when assisted suicide becomes available? Once assisted suicide has become a legitimate option, even institutionalised, the elderly will start to feel that they are being selfish if they don’t avail themselves of this opportunity. And the loved ones may be less inclined to accept the ‘burden’ of care because it is no longer part of the inevitable process of aging. Rather, that burden of care could be perceived to be the result of a selfish choice.

The choice to stay with us was much easier than this for my husband. The person who would be doing the caring, me, desperately wanted him to stay. Those who had offered the option of assisted suicide clearly had no benefit from it and so in the end their suggestions were easy to reject. Many others might not be so fortunate.

And so he stayed with us. New strengths of character grew, his already terrific sense of humour developed and he appeared to have periods of meditation and prayer as he went through a period of transformation and growth which can happen to a person as they embark on that final journey. I read to him, played music and Alan Bennett recordings. We, those who helped care for him with me, had the profound gift and privilege of caring for someone in that final stage of life.

He lived for nearly another three years after he had been given six months to live. And for much of that time he led what was a profoundly circumscribed but at the same time a peaceful and happy, life.

When people think too hard about what is coming, they imagine the illness from the perspective of the current mental state. From that perspective it appears intolerable. This view is perpetuated by articles such as this one which suggests that when you have a neurological condition ‘you could end up with a fully functioning brain and a useless body.’

But this is not how it works. The decay of our bodies is accompanied by cognitive changes which appear to involve a loosening attachment to the world around us but at the same time an intense appreciation of people and the development of understanding on a different plane.

One of the things which struck me about my husband when he was ill was how he emanated so much peace. If I was ‘stressing’ about something I would simply go and sit with him. Somehow, he emanated ‘the peace that surpasseth all understanding’. Sitting in his presence would calm everything down.

He took delight in small things. He would sit in the garden and it was as if the birdsong, the rustle of leaves on the trees had a depth and vibrancy which those of us who take them for granted can neither hear nor see. When a younger neighbour died suddenly, despite his own limited and limiting condition he said he was glad to be alive. Another thing which was amazing was how he drew us together. Family, friends, carers, we would all laugh, smile, joke and on occasion sometimes sing around his bed. People who would visit often said how our house was a happy home with smiles and joy.

Yes, there were problems. Of course there were. The bed sores for example. But even these would eventually heal. There were painkillers and treatments and things we could do. When the end came, we were sitting alone in the garden. I was resting my head on his chest when he drew his last breath. It was a beautiful summer’s afternoon. It was as if heaven met earth to gather him up. Friends and family came over and we sat with him in the garden drinking tea and some sung as his body got used to death.

The scenario is very different for those who choose to take their own life where death can be delayed for up to 72 hours or even longer. When Dr Anne Turner chose to end her own life in Switzerland her story became front page news and made into a short feature film. Her son stressed that the programme was not a polemic for assisted dying and ‘also the final death scene was not easy. She was choking a bit because the barbiturates went down the wrong way. It is not a really peaceful ending. It is traumatic and difficult’.

Another thing which struck me was how accompanying someone along their final journey, seemed to soften the blow of that final separation and tame death’s sting. Even our young daughter seemed to cope so well, she grew in her friendship circle, did incredibly well at school, and simply got on with life. And I am eternally grateful to my husband that he had the courage to stay with us. His smiles, interest in those around him and peacefulness suggest that he too was glad of his decision. I remember that in the morning of the day when death came for him, he wept, as if he knew he would shortly go and was sorry to leave us.

When I hear the well intentioned advocates of assisted suicide I think of my husband’s grown up children and the distress and confusion they inadvertently caused. Then I think how we could have been deprived of those last few years growing together. And I am eternally grateful that my husband ignored those who offered him choice.