Journey to a bleak land that we can’t bear to think about

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Things are a bit difficult at the moment. And we know they are going to get a lot worse. That is the only certainty.

The when, and the how, is the unknown. A member of my family has Alzheimer’s.

I won’t name him because I need to preserve that very important thing that has to be clung to right to the inevitably bitter end – his dignity. But diagnosis came a couple of years or so ago, swiftly followed by medication to halt the progress of this disease’s ruthless, relentless scythe through the mind, hacking through strands of memory, amputating the cranial equivalent of an arm or a leg.

I forget precisely when, in the way that we all misplace facts, reading glasses, car keys. But now every time a spate of menopausal absent-mindedness temporarily cotton-wools my thinking, I see myself as so incredibly lucky. Because I WILL remember again and, in time, he won’t.

We don’t really know what to do for him. None of us. You can’t, every single day there is something that blind-sides you. There is no straight line progress and no one can forewarn you because it’s different for everyone. All you can do is think on your feet, second-guess and tell white lies to pacify.

We on the periphery visit and run errands, then go home to normality and sigh. Meanwhile, his partner bears the strain every waking moment. She who was once his equal as they walked side by side is trying to get used to being either a step in front, or a step behind.

As she learns how to support him, fight his battles for him, lead the way and pick up all the pieces, she has become his rod and staff, his torch, his comfort blanket, his whipping post, his teacher... His mother. And each new role fills her with sorrow.

Then there are incredibly sad moments for him, too – when he sees, with searing clarity, what is happening to him.

He taught all the kids in our families how to understand maths. Yet now, simple arithmetic is beyond him. “It’s like a wind is blowing through my mind and scattering things about and I reach for them but I can’t get hold of them,” he explained, so wonderfully, so wisely, I understood completely what it must be like to be this intelligent man, trying to make sense of what is happening inside himself.

The worst is yet to come. For them both. But how do any of us prepare? It’s like the whole family is being marched at a zig-zag through an uncharted land to get to a place so bleak and dark and sad, we cannot bear to think about it.