‘I lost my mother years ago.’ It’s an odd thing to say about someone who is still living and breathing, but when faced with the advanced stages of dementia it can be the reality people have to live with. There is a point in the journey when communication becomes nearly impossible, the affected person stops recognising even their closest family and those who care about them really feel that the person they have loved is no longer there. Such a conclusion is understandable, but it raises all sorts of questions about the meaning of personhood in the 21st century.
The feeling of having lost someone is certainly not an uncommon experience. Ian Botham was so overwhelmed by it that he took the difficult decision to avoid visiting his father in the last 6 months of his father’s illness with dementia – fearing that his positive memories would be distorted by seeing his Dad in his final days. I can’t possibly judge Sir Ian for this decision, but I am deeply sad for him and can’t help wondering if his memories won’t be distorted anyway; our imagination has a disturbing habit of filling in the gaps in our experience.
It is interesting to me that we rarely hear someone talk of losing a relative to cancer until after their actual death. While cancer is an equally devastating illness, there is somehow something more acceptable about dying from cancer than dying from dementia – we still see the person inside the body no matter how ravaged it may be, as long as the mind is still working; in fact, even when the mind finally succumbs to cancer we seem less affected by this because it started in the body. The way Western culture places the intellect above all else must have a significant part to play here – I’m not sure the same would be true for all cultures and it would be interesting to know how dementia is treated in cultures that differ significantly in this area. Maybe stigma and fear have a large part to play also – I know that there was a time when dying from cancer was far from acceptable, when talking about cancer was taboo and a diagnosis somehow a cause of shame; this was before my time as a doctor and is so far from my experience that I can hardly imagine it, but there are echoes of the same in dementia, and I suspect these barriers will prove even harder to break down.
When have we ever heard the parents of a highly disabled child talk about losing their child while they are still alive? Through the link our practice has with a children’s hospice I talk frequently with parents whose children are no more able to communicate with their family than would a person in the late stages of dementia. There is grief and sorrow and pain for sure, but never a sense that their child is no longer a person or that only an empty shell of a body has been left alive. Of course, children are innately easy to love, but I don’t think it is a lack of love for the elderly that is at work here, or simple ageism; there seems to be something uniquely challenging about losing what we once had when it comes to our intellect.
The issue raises important questions: who am I, when I have forgotten who I am? In what way can I still be a father if I have forgotten that I have children? The cartoonist Tony Husband had to face all these questions as he watched his father die from dementia, an episode of his life that he recorded in cartoon form and which was published in full by The Daily mail. The cartoons are poignant, but not sentimental, and although the headline writers talk about dementia ‘stealing away his father’, Husband himself never describes things in this way. He simply tells the story of what happened, with both gentle humour and deep sorrow, leading to one moment right at the end of his father’s life, after any sense of meaningful communication with his Dad appeared to have gone forever, when out of the blue and in a rare moment of wakefulness, his Dad said to him: ‘Take care, son.’
Perhaps a mother can still be a mother simply because her son knows that he is her son. If our personhood is defined by whom we have loved in our lives (and there are far worse ways to ascribe meaning to our existence), then maybe it is sufficient that we are defined by those who love us, even when we have lost the capacity to show love in return. This love might even find new ways of expression: a father with dementia might be willing to hold his daughter’s hand, having previously been too inhibited to do so; a mother might come alive when the piano starts playing and sing with her children for the first time in many years; bitter memories of past wrongs may be lost alongside those memories we would rather keep, allowing the restoration of relationships as barriers are removed.
In a society that defines its members primarily on the basis of what work they do, how successful they are and how much money they earn, we should not be surprised that we lack the cultural aptitude to cope with dementia. However, if we can redefine what we mean by personhood in a way that is fully inclusive of a person with dementia, we may be more equipped to deal with this illness and perhaps all find a better way to live along the way.