In the Midst of Life

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 andwrite, 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.
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    Oneday 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