Thoughts on prolonged death

It has long occurred to us, that many people’s views on death and dying have been skewed over the years in the society we live in. Several key moments have crystallised this for us. The most recent being visiting a relative in a care home that is in the late stages of Parkinson’s and old age. She receives, for our society, what would be considered extremely good care. It is a place where the staff care, and the facilities are good. But, we would never want to be there. Truth be told, we never will, control over our own end always will be ours unless something happens to us other than the natural progress towards death. She is bed bound, barely awake most of the time, struggles to communicate beyond the most basic needs and even then that is often unclear. It is no longer a life as such. Yet those around her, encourage her to hang in there. To look forward to the next visit, bring her news of the world around her and extended family. All of this we would imagine is very difficult to comprehend as her sense of time and space are distorted by the constriction of her environment and her narrowing awareness. One of her daughters is in deep denial about her dying, albeit in a prolonged and slow manner. It occurred to us, that she has probably never been given any advice on how to die, or indeed any permission. Instead, she is constantly told how much she is loved and how much she is missed. When they leave, she is given the date/time of the next visit. All of which is done with good intention and love. But it basically amounts to “don’t leave, hang in there until next time.” There is no permission to pass. Permission to die, with the full expression that she will not be forgotten. That she will live on the characters and actions of those that she helped shape over the years. That it is OK, to not have to be in pain and frustrated.

When her husband passed. Our children were involved. They knew. One of them watched him die with the rest of us. They went to the funeral. The children of our sister in-law did none of that, not even the funeral. It feels like, that for large parts of the society, death and dying are something to be feared and hidden away.

We don’t mean the healthy fear of death. You know the one, that which keeps you from getting into needless accidents and an untimely end. We mean the fear of death as a natural process. Something that will happen to all. The hiding away of it, so that the knowledge of how to deal with it is no longer being passed on.

It also seems to go along with the measuring of success in terms of the avoidance of dying. Does a treatment work, does a drug work, does a process work, does a situation work? Measuring it on just the ability to keep people alive, well that really skews your views. Quality of life, well that is completely secondary. Which is disturbing, especially if you consider that the decision to prolong life with primacy given to solely this, is often taken by people who are not the person in a prolonged death. They are all to often, unable to express their desires and fears, a disempowered participant.

Because we are locking away death, fearing the process of dying. Those conversations are often not being had, whilst they can. So wishes for treatment and types of care are not talked about while the person is able to express themselves.

You now see adverts on TV here that seem to be going through a phase, where they are promoting a “no fuss cremation”, often pre-paid. Now we are not tied to any particular ritual, or indeed religion. So we get that everyone’s preferences will be different. But we cannot escape the belief that rituals serve a real purpose, in whatever form. That a ritual around a death, such as a funeral and/or wake around here, provide the space for people to connect with death and process the events in a healthier way. Removing this is another step of moving away from experiencing dying and death.

It really concerns us that for many people we meet now, their first real experience with death and dying will be their own. They will come into it, with uncertainty and confusion about what happens. Carrying possibly an underlying fear that has been internalised based on all the messaging that death is “a bad thing” and to be hidden away from others.

Now, we had a lot of disagreements with our father in law. It was not the greatest of relationships. But, no matter what, when the time came, we travelled 600 miles in a rush to be there, and to bring our household. We stayed with him for many hours, while he was given assurances from our wife that it was OK to pass. At the end of the day, if any of us can stand witness at the moment of death and ensure someone is not alone as they leave, we should in our opinion. Some people unavoidably die alone, such is the nature of things. But we can help those we can, and they in turn will help us when time comes for our own passing by allowing us to experience that with them.

Of course, our own relationship with death is a little different from those around us. Both for the beliefs we hold and embody¹, but also for the nature of our relationship with time and presence. Maybe it’s a little more familiar to those of us who are not always here², where gaps in our life belong to another and when we step back, it may always be for the last time.