Most of us live purposeful, contiguous, continuous lives. We do X in the hope of accomplishing Y. Life may intervene and cause us to reach Z instead, but at that point we can take a decision. Do we strive to get back on track to Y, or accept Z, or plan for something else entirely? The point is, we live in the present, but have at least one eye on the future.
Those with dementia don't enjoy such luxury. Their lives are somehow discontiguous with the real world, somehow not quite involved with objective space and time. They may do X with the intention of achieving Y, but their starting point is not one we would recognise. And tomorrow they will do X again regardless of the consequences they experienced today, because they live constantly in the present.
Practitioners of Eastern mystic religions exhort us to live in the present, to 'be here, now'. To that extent, dementia sufferers might be presumed to have reached Enlightenment. But their present is not our present. They may believe, for instance, that 'now' is fifty years ago, and everything is seen through that lens. So their starting point, their 'X', is not one that 'outsiders' would easily recognise.
And because everything seems to reset each day (I can think of no other way of putting it), they appear not to learn from the experience.
Therefore their lives are fragmented, And when I recall the last years of my mother, who suffered from dementia, it is fragments I remember: disjointed pieces of a jigsaw which are independent yet tell a larger story.
Fragment 1:
My mother and I are enjoying a cup of tea and some cake, when she suddenly looks worried.
"Are you ok, mum?", I ask.
"I can't remember if I locked the shop up."
"Don't worry, I'll check on the way home."
The shop she was referring to was the one she'd sold when she retired, thirty years previously.
Fragment 2:
My mother was spotted by one of her neighbours, striding down the road. The police brought her back to her flat in a sheltered housing complex. When they asked her where she was going, she had replied "Home, to Stoke Newington". That was indeed where she lived – seventy years ago.
The story told by such fragments is one of loss. Each time you see that person, there is something missing, there is somehow a bit less of them. They are disappearing.
What was decidedly not fragmentary, but continual, were the worry and the phone calls over three years. For instance: the phone call when she said she had no food to eat (she had), or the one when she told me she had locked herself out (she hadn't). And, most harrowing of all, the panicked phone call one Saturday morning to tell me that she couldn't remember who she was.
Eventually, it was clear that she would have to move into a home. That lessened our day-to-day concerns, but we kept anticipating the day we would visit and she would no longer remember who we were. Thankfully, that didn't happen.
When someone dies, there is a period of mourning, a formal period that starts with their death, involves certain procedures or practices, and ends after a set time. There is also a period of grieving, which doesn't end, but lessens over time. When someone has dementia, they are still alive, so you cannot begin to mourn their loss. But the grieving starts, and becomes worse over time.
One cold, rainy night in November, my mother's care home phoned at around 11 pm to tell me that my mother had passed away.
I had the best night's sleep I'd had in years.
Excellent take on what I have long thought to be one of the saddest damn diseases out there. You have a nice way of taking a complex topic, both medically and personally (to you), and giving readers just enough information for them to understand the madness of it while conveying your emotional toll in one succinct line to end the essay. Well done.
So many feelings. There really is a difference between mourning and grieving, and you explain it so well and so beautifully here. And the fragments. This post is so moving. Thank you for sharing, then and now.