I hope you didn’t read the title expecting a solution. Because we are not in a solvable state. Dissolving maybe, but not solvable.
How do you make sense of dementia? How can you explain to someone the profound desolation when your own mother doesn’t know who you are? When she asks you whether she knew your Mum?
How can you possibly convey the heartbreaking trauma of having your 78 year old Mum begging to go home to her Mum and Dad? The Mum and Dad who died 45 and 30 years ago. Of knowing she is ill but being unable to get her to see a doctor?
How can you explain the soul shredding mundanity and frustration of the sheer volume of paperwork and complexity around a million little things like not being able to get her gas meter read, because she doesn’t hear the doorbell and is utterly paranoid about locking the gate?
It’s impossible to describe how agitated she gets when we try to fix something around her house. How difficult it is to do simple hardware jobs when she is overflowing with anxiety about what it means, how it happened, and whether she is going to get into trouble. And hovering over you begging to go home to her Mum and Dad.
I’ve heard people say it’s like caring for a child – that the positions are reversed and the children become the parents. But that’s far too simple. Far too benign. Because children learn. Children have hope. You can explain things to a child. At the very least, children can understand when they have gone too far.
Children grow and progress, but dementia is taking my Mum inexorably down. I lost her years ago, but there has been no funeral. No wake. No flowers. And every time I visit I lose her again. When Dad had cancer I was waiting for the phone call that would tell me he was gone. Now I wait for the next crack in the increasingly empty shell of my mother’s brain.
Imagine not being able to continue, but getting up every day and doing it again. Imagine a soul as lost and helpless as a child, but as strong and angry as an adult. Imagine losing your mother over and over again. Imagine a death that takes a decade.