In conversations this week, whilst holidaying with a dear friend in Queensland, it has been unsettling to hear my friend say she can see my decline, however subtle it is, and no matter how much I attempt to hide it. We have known each other long enough, and well enough for her to be honest, and I really appreciate her honesty. On the other hand her husband, whom I’ve only met a couple of times before, can see no signs of dementia. I guess that is because he has not known the ‘old’ me. It is the two sides of the same coin.
It is a strange and confusing time for my brain, as I struggle to redefine myself and explain honestly how I paddle, and how much harder it is getting. Whilst I write this, knowing she will read it, I feel some tension in writing about it, but this blog is the more tangible and readable part of my world, and so it is important (to me) to chronicle my journey honestly. I’ve had friends and strangers suggest because I’m not showing more severe symptoms of dementia, maybe I don’t have it, and this is part of the reason some only see the side of the coin where the symptoms are not so obvious. Swans rarely show their paddling webbed feet, and unless protecting their young, or fighting off a predator, or feeding, they remain calm and serene on the surface. Inspector Lynley said this of his mother, who he suspected as having Alzheimer’s disease, as she struggled to continue to live alone with obvious cognitive decline.
And yet, there is a third side to my coin, the one my husband sees more often, when I don’t work so hard to hide the symptoms of dementia. It is exhausting trying to hide them, it is humiliating when they do appear for others to see, and frightening when I find no matter how hard I paddle I can’t always hide or stop them. At these moments, I want to crawl under a shell and hide, increasing the sense of isolation, and fear, and sadness. Finding the humour in it, or something… anything is the only way to get through it. Laugh, and the world laughs with you, cry, and you cry alone. I’m lucky, because I know I have many friends who will cry with me. I feel blessed more than I feel sad, and fulfilled and in company more than alone. And loved.