Robin Thomson: What I wish we had known
By Robin Thomson. Published 2020-08-27BOLD-Living
When my wife, Shoko, was diagnosed with Alzheimer's, we had no idea what lay ahead. Here are some of my reflections.
Some of the things our family might have done differently:I might have realised that Alzheimer’s is not just memory loss. It can affect the whole person. So when Shoko became anxious about losing things – a kind of paranoia – I would have recognised this and known how to respond better.As the disease took further hold and Shoko’s personality began to change, we wondered what was happening to her. Was she the same person? A key book (one of the few published before 2012) was I’m Stlll Here by John Zeisel (London: Piatkus, 2011). His basic point was: the person with Alzheimer’s is still a person with whom we can relate. But it’s a different relationship. It’s the same person, but not the same person. We can’t go back to the old relationship. But we can build a new relationship. This transformed our understanding.A vital part of this understanding was that the way we related to Shoko was significant. ‘Your body language is more important than what you say,’ our daughter Sarah told me many times, long before I realised it myself. It was true. If the tone of my voice was impatient, or if I hustled Shoko to sit down, get up, or go out, she found it distressing. Sometimes it made her cry. ‘Why are you so cross with me?’ If I spoke softly, or held out an encouraging hand, the rewarding smile warmed me more than I deserved. So trying to persuade her rationally about ‘missing’ things wasn’t the point. We could have been saved many fruitless arguments about where to keep a key or what had happened to a cushion.What this all added up to was the importance of love. We did learn this, though too slowly. And we did get some things right, which I will explain in the next article.
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