Eventually, a doctor came and told me that my mother was dead. They had done all that they could, he told me gently, but she had not responded.
‘Since death (take my words literally) is the true goal of our lives, I have made myself so well acquainted during the last few years with this true and best friend of mankind that the idea of it no longer has any terrors for me, but rather much that is tranquil and comforting. And I thank God that he has granted me the good fortune to obtain the opportunity of regarding death as the key to our true happiness. I never lie down in my bed without considering that, young as I am, perhaps I may on the morrow be no more. Yet not one of those who know me could say that I am morose or melancholy, and for this I thank my Creator daily, and wish heartily that the same happiness may be given to my fellow men.’
— the young Mozart in a letter to his father
2004-06
A GOOD DEATH
There are many neuro-muscular degenerative disorders – motor neurone disease, Parkinson’s disease, multiple sclerosis, Huntingdon’s chorea, among many others. Each follows a similar, though slightly different, pattern. Basically, the nerve endings start to degenerate, and with it, muscular control starts to slip, and the condition is progressive over a number of years. Cognitive function is usually not involved, and there are many examples of a brilliant mind in the wreck of a body – Professor Stephen Hawking springs to mind. However, different areas of the brain can sometimes be affected. If the centres regulating speech are damaged, a misdiagnosis of dementia may be made, with tragic results for the patient. I can think of few conditions more heart-rending than to be trapped, unable to speak, in a degenerating body over which you have no control, yet retaining your full mental faculties, and hearing, on all sides, that you are demented. However, this is not always the fate of a person so afflicted.
Carole and John had been married for ten years. He was a widower of sixty-five and she was a divorcee of fifty when they met. He was the love of her life. Ten years later he started to do strange and unexpected things, and to say things that made no sense. They consulted a doctor, who diagnosed frontal-temporal degeneration with primary progressive aphasia – that is, language mix-up and then loss of speech. John could understand exactly what was being said, and he and Carole listened carefully. They were told that it was not Alzheimer’s, but a degenerative disease in which the nervous and muscular system would break down. The ability to make any decisions would go, together with the ability to read and write, but understanding would remain for a long time. They were told that there was no known cure, but that certain drugs could relieve the symptoms and that death could be expected in two to five years. John said, ‘At my age, seventy-five, I can expect death in the next two to five years anyway, so what’s the big deal?’ and they all laughed. Carole was advised to keep a regular domestic routine going, and they were both told to enjoy life as much as possible – stimulation was the thing, physical, mental, emotional, visual, anything that makes you feel good.
They had two years of intense living and loving. They counted each new day as a gift from God to be lived to the full, and every hour was filled with rich experience. He loved music and had been a choral singer all his life, so, with the conductor’s permission, he continued weekly rehearsals and could sing in tune, but he did not take part in concerts. They went to new places, saw new things, read new books (Carole reading aloud), met more frequently with their families and grandchildren – it was good for the grandchildren to see John and to know that, in spite of his mental and physical infirmities, he enjoyed life. They went on several holidays together – the Canaries, the Greek Islands, a cruise to the land of the midnight sun – and all of these trips John relished. He loved sitting in the sun.
As time went on, John developed amyotrophic lateral sclerosis, which is a slow creeping paralysis. He was now failing fast, and one by one his muscular controls went, including continence and the ability to chew and swallow. He was at home all this time. The Macmillan and local hospice nurses came daily, and John’s son and two daughters (one of whom was a nurse) visited regularly. With their support, Carole managed well, and they were deeply happy. He knew she was always there and, although John had lost the ability to express himself through words and sentences, he spoke with his eyes, which followed her everywhere. Almost until the end – or possibly right up to the end of his life – he retained understanding and responded to those around him. Human interaction is not dependent on speech, and I have even heard it said that language and speech make up only ten per cent of all human communication.
One day Carole told me an interesting story. They were both deeply religious people. Carole had found her faith during the trauma of the divorce from her first husband, John when he was eighteen and had been called up for military service during the Second World War. Apparently the sergeant called his unit together and said something like, ‘Right, you ’orrible men, tomorrow you go to France, and half of you may not come back. Those of you who feel you might be in need of some horizontal refreshment had better go and see the company doctor and have a talk about sex. Those of you who feel that death might be an uncomfortable experience had better go and have a talk with the padre. Company dismiss.’
John had a talk with the padre.
Both John and Carole were Lay Readers in the Church of England, which is how they had met in the first place. John had now reached the stage of his illness where he could not talk, or if he did try it was unintelligible gibberish. They had, throughout their marriage, said daily prayers together, and Carole continued the practice, although John could not join in. She told me that one morning – and she couldn’t say why – she suddenly chanted the Anglican Order for Morning Prayer, ‘O Lord, open thou our lips,’ on a G.
Immediately, in tune, and with clear enunciation, John responded:
And our mouth shall show forth thy praise.’
She caught her breath in astonishment, and continued:
‘O Lord, make speed to save us.’
He responded:
‘O Lord, make haste to help us.’
She continued the centuries-old chant until the conclusion:
‘Glory be to the Father, and to the Son, and to the Holy Ghost.’
He completed the ancient response:
As it was in the beginning, is now, and ever shall be: world without end. Amen.’
All this was accomplished with clear articulation, in a precise rhythm, and in tune.
And although John never spoke again, he sang the morning and evening responses every day until he neared the end.