Today my sister was shocked when my Mum asked her if she had any brothers and sisters. Mum wondered whose birthday she could see on her calendar (it was her grandson). Last week she asked me if it was my parents who had a house at the beach. I wonder if she sometimes wonders why I haven’t introduced her to my Mum? I wish I could.
Dementia, for us, consists of thousands of these moments, interwoven with snatches of lucidity. Some things seem to stick better than others – she often seems to know I have kids, but has no idea how many, or what they are studying at University (they are 9 and 12 years old), or even their gender. But it’s clear she no longer identifies as my Mum – except when she does.
And it’s obvious she doesn’t know my husband’s name, although we’ve been married for over 20 years. Except when she does.
And she has certainly reached the point where she can’t read a menu. Except when she can.
There’s definitely no way she could find her way to the local shops and back anymore, except on the days when she does just that.
This, I think, is one of the deepest and most unexpected traumas of dementia, for those trying to wrap their lives around caring for the patient: The astonishing lack of certainty. It’s a disease with no fixed pattern. No identifiable time frame. Nothing you can rely on from one day to the next.
She could go on like this for years. Or she could die tomorrow. Of course, that’s true of all of us. Life is far less certain than we would like to believe. We hedge ourselves about with calendars, plans, and timetables in an attempt to pin some predictability onto our lives, even though it could all evaporate in a puff of smoke at any moment. But the human brain is very good at inhabiting its self-created patterns and not looking outside itself to the terrifying possibilities of tomorrow.
“How we envy you, envy you! Lucky humans, who can close your minds to the endless deeps of space! You have this thing you call… boredom? That is the rarest talent in the universe! We heard a song — it went ‘Twinkle twinkle little star….’ What power! What wondrous power! You can take a billion trillion tons of flaming matter, a furnace of unimaginable strength, and turn it into a little song for children! You build little worlds, little stories, little shells around your minds, and that keeps infinity at bay and allows you to wake up in the morning without screaming!”
Terry Pratchett, A Hat Full of Sky.
Dementia forces those shells open, and breaks them into pieces. Dementia is the reason you wake up screaming. Dementia keeps dragging you back to ceaseless, merciless awareness that today, tomorrow, or next week could be a catastrophic crisis. A shocking new fall downwards. A crisis whose shape you can only guess at. A crisis that you can see coming but can’t possibly prepare for.
How do we look away from that crisis and go on with the day? How do we stop flinching every time the phone rings, and dreading what we will see when we open her door? How do we grieve for the loss of our mother while keeping her alive as best we can?
There are no answers here. Only questions we can’t bear to ask.