He related the havoc the initial diagnosis had caused – and of the upheaval in his life from that time. An educated man, he moved rapidly from full time employment to becoming unemployed and forbidden to drive. He explained that his doctor, who knew him well, knew that he wouldn’t stop driving voluntarily, and took his Driver’s Licence from him and returned it to Swansea. Then he grinned at his doctor's loss of memory. The doctor had apparently forgotten that his patient also had a Pilot’s Licence….. and we all smiled.
As he unravelled the difficulties of accepting the truth, of accepting new conditions on his life, there were painful times. On moving house, he came across a thesis that he had written. He knew he had written it because his name was on it, so that was easy. His distress unfolded when he realised was that he could no longer understand many of the words he had written. He could not even pronounce them. This was one of the most painful parts of his journey, and the raw sentiments of that moment were still powerful. We felt for him.
With humour, humility and grace, he explained how difficult life now was for him; the simple things he forgot; where he was going and why; the little prompts that had to be in place to help him navigate through each day. He would get on a bus to go to the doctor’s, but the bus was going to town. He would forget the purpose of his journey, and believe he was going into town, until he overheard someone else talking about a doctor. Suddenly, realisation would dawn - he would remember why he was on the bus. Now he has to catch another bus going in the other direction. We laughed with him.
He explained some of the hilarious situations that now occurred daily. Little notes that he left for himself as a prompt in the flat, he would sometimes forget to take down, and on one occasion he went out with the same shopping list for five consecutive days. We began to understand. I realised that through sharing his journey, he was engaging empathy and offering a more complete understanding of dementia, which reminded me of Arthur Kleinman’s work.
He told how he had booked himself into a Care Home “as an experiment” and discovered that he was arrested by the Police when he went for a walk. He described the three televisions in the same room, each on a different channel. And of course, the sleepers round the walls. Nothing was on offer, so he left. We were unsurprised.
He was still an artist, enjoyed his painting, and he explained how his eyesight had changed with the onset of his condition and colours appeared to be more brilliant. We started to admire him.
He went on to relate that, when his children were growing up, he would not use physical punishment to chastise them. However, as they entered their teenage years, he had to find a deterrent. The punishment he invented was threatening to invite all his son’s friends round to the house and then telling his son, in front of everybody, how much he loved him! This, apparently, did the trick, and his grown family use the same tactic today. We marvelled.
He obviously faced each day with difficulty. He described an especially large mirror, which he has placed in the hall, so that every morning it is the first thing he sees. Every morning, looking directly at his reflection, he points at himself, and repeats his mantra: “Today you will cope. Yesterday is gone and tomorrow is not yet here.”
Tossed about by the various emotions in his story, we were all enthralled by his experience. Empathy had been fully engaged, He had enlightened a corner that, for some, remains dark and mysterious, and where real meaningful engagement can be difficult.
With pride he stood before us; “I will always be me. I refuse to be a condition.”
His courage was astounding. He was inspirational.
His ability to acknowledge his condition publicly, and to tell of his adventures, required strength of character.
It was food for thought.
©Linda Jane McLean
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