Lost memories of Alzheimer’s
This weekend, as every weekend, I paid a visit to my 90 year old mother who is in a care home in Sheffield. She has Alzheimer’s disease. Looking back, my family and I could see the signs of its early onset around the time she was sixty years old: bewildering little lapses of memory or odd actions which defied explanation. Well, now, some thirty years later, all has become clear and we know that this dreadful illness was beginning to grip her. As a younger woman, she was intelligent, lively and had a keen interest in life. It was from her that I inherited my own fascination with ancient buildings, particularly churches, and, on trips out into the country in our Morris Minor, we would be treated to a running commentary about the history of this stately home or that tiny country church: tales often peppered with stories about the unusual: ‘Why is there a human skull in the lychgate at Cantley?’
Her sickness began slowly, as always, and then accelerated in her 70s: I would be ‘phoned a couple of times a week by her asking me to come and get rid of this awful stranger who would not leave the house: the ‘stranger’ was my father, to whom she had been married for fifty years and with whom she had enjoyed a devoted and deeply loving relationship: she simply could not recognise him. Eventually, she suffered dehydration and was hospitalised. We were told in no uncertain terms that she could not return home, as my father could not cope with her and also with the stroke he himself had endured. So, Mom was put in a care home and we had the distressing experience of being followed to the double doors every time we left: after we exited, she would be seen crying with an uncomprehending and distressed look on her face. Over the years, this bright and once very lovely lady, has successively ‘progressed’ from fanciful talk to gibberish and, now, to falling entirely silent. She can no longer walk and can imbibe only drinks and very soft blended foods. She has not been able to recognise me or any of the family for about eight years and, as the weight drops of her, she simply gazes out of the window to the only source of sensation she can appreciate: sunlight.
There are compensations in this dread disease: she was entirely unware of my father’s death, an event which she anticipated with foreboding and fear. Instead, she believed the day of his funeral to be a jolly outing with some vaguely familiar people: the funereal baked meats a family party. However, the overwhelming experience is of futility as you watch a much loved person robbed, not only of their physical and mental capabilities, but of the memories and communication that made them ‘them’ to you. There is a very real sense in which my mother died many years ago, leaving behind a barely recognisable husk.
There are profound theological issues at play here: what makes a human being what they are? Is it memory? If so, is Mom less of a human being than she once was? What happens when quality of life becomes so poor that death would be a better option? Are we to simply carry on caring for the body when all that made the person recognisably ‘them’ has departed? And, ultimately, where is God in all this? Experiencing Alzheimer’s, at the very least, requires a re-structuring of what we mean when we talk about a loving and provident deity.
So you may ask me whether I would consider euthansia in these circumstances. From my present vantage point, my answer would be ‘no’. Aside from the moral and ethical difficulties which surround the matter of the clinical taking of human life (the possibility that it is open to abuse; the position it puts physicians in; decisions about the stage at which we can deem that life is not worth living. etc) I believe that my mother is at one and the same time displaying the humanity and ‘creatureliness’ that reminds us that we are human and created and not divine and undegenerate: and is also still on the very human road to the perfection for which we are destined. Mother’s ‘soul’ is the total summation of all that she has been, all that she is, all that she is to be and all that she could be: and it is this true ‘her’ that we now tend and care for in her final days. As weak and as diminished as she is, her humanity still deserves respect and honour. It is for that reason that my weekly visits to her bedside, as conversationless and dispiriting as they are, are of immense importance.