April 2020

 

Dear future self,

As I am writing these lines, the coronavirus pandemic is ravaging the world. And given the existential angst that comes with it, the first idea that comes to my mind when thinking about a future state of dementia is gratefulness: I will have survived the coronavirus and other threats and I will very likely have lived a long life. This thought reminds me of the Janus face of medicine, science and our modern society: some of the most terrifying threats we know are in fact the reverse sides of some of the most stunning successes we have achieved. The high prevalence of dementia would be unthinkable without longevity, and the terrifying experience of dementia would be less terrifying if the human mind wouldn’t have evolved to such astonishing heights as we have witnessed over the last centuries. 

Usually, when I start writing a letter, I try to imagine the receiver of the letter, his feeling and thoughts, our relationship with each other, our common ground. But here I already stumble: Who are you, the receiver of the letter? Are you at all able to read and understand a letter? Are you at all interested in what I am trying to write to you now? Do we have a relationship to each other, a common ground?

I know that you will be called by the same name that I am called by today, you will be made up of the identical, globally unique genome, and your body will show the traces of the life that I live and will have lived. And yet: the material continuity will stand in stark contrast to the psychological discontinuity. Your feelings, thoughts, memories, attitudes and habits may display a totally different inner world that mine do today, and the traces that will persist of my current I may be nothing more than vague and surreal shadows. Even though you may not remember your former self, I very much insist that others – my family, my friends, society in general – will try to see the whole picture, to put the former and later self together like a modern art mosaic, to listen to the whole biographical music even if the tonality and rhythm have shifted fundamentally in between. 

Dementia, the label that medicine attaches to your state, can mean a whole lot of things and I do not know what it means to you and how you actually experience yourself and the world around you. You may suffer, you may rejoice, you may feel weary, you may feel alive, you may feel like a flickering candle that is about to burn down. You may be aware that you have lost much of what you had been given and built during your lifetime: your knowledge and skills, your memories and values, your sense of yourself and your relations with others, your concept of purpose and meaning in life. And at the same time, I hope, you may also have rediscovered some resources, uncovered some hidden memories, found some new friends. But even if the losses outweigh the gains: can anyone say what is more important for human beings, learning or forgetting, gaining or losing? It seems to me that a balanced, complete and rich life needs both. Maybe dementia is just the most radical way of symmetry in life: the long crescendo in childhood, adolescence and early adulthood is mirrored by a dwindling decrescendo towards death. 

Let us transcend the focus on you – and me – as an individual. The powerful performance of an individual in the middle of his life is framed by the vulnerable states of dependency in infancy and senility or even dementia. With great gratitude I think back to my mother, my father, my family and all the others who led me into life when I was a small child. I do not have a lot of explicit memories, but I still have the unmistakable feeling that I was secure and taken care of. The fact that my mother died when I was ten years old, and that my aunt as surrogate mother died when I was 28 years old, made me realize how blessed I had been: I not only had the best mother one could think of, I actually had the two best mothers you could think of. This wonderful caring cocoon I had in my early life is the one thing that I wish you most at the end of life. I hope you have at least one such person who takes care of you and loves you just as you are, whatever silly stuff you may do, however distressing it may be to take care of you. If this person is in fact your partner, your daughter or your son, then you are really lucky. But it may be any other person, a good-hearted nursing assistant who may not even speak your language, another person with dementia in the same nursing home, or any other human being who knows how to love. I just hope that pets, robots and computers are not the only ones who are there for you…

And please let me add one last point, let me express and ensure you my conviction that whatever dementia does to you and whatever you lose through dementia: I believe that you are never lost, that you are always remembered and sheltered in the eternal reality that is called God. The Jewish bible has wonderful pictures for this: it says that your name is written into His hand, that every single hair of you is counted. So is every brain cell of course. Even if you may not have faith or feel any connection, I still hold the hope that there is someone in and beyond the universe who can reverse all losses associated to dementia, console all suffering and accomplish your life in ways you could never imagine…

​

Ralf

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Ralf Jox is a bioethicist, neurologist and palliative care specialist working as Associate Professor at

Lausanne University Hospital, Switzerland, with affiliations at the Institute of Humanities in Medicine,

the Clinical Ethics Unit and the Chair of Geriatric Palliative Care.