I think one of the missing pieces in dementia care and love of our people with dementia is awareness of how much of the personality remains intact. I see it all the time in the care ward.
The man now confined to a wheelchair who sings rousingly and determinedly from time to time but greets us females with “darling.” And we all want to kiss him. Seems that’s a basic part of that sweet man.
My man, being felled by a cold and helped to bed by myself and the nurse, one on each arm, raises his head and chortles, “I’ve got all the women.”
His daily vocabulary is pretty much down to 10 or 20 words, and a bunch of catch phrases, but…. there he was, my guy, focussing on one of the main values in his life- the female.
But to tell the truth, focus is not just an alien word but an impossible action.
“I wish we could be together for a thousand years,” he says, a few days later, after he kind of remembers me but not my impossible name, stroking my face when i finally get him into a quiet space. The ward is extremely upset today because a frail lady is in a brody chair strapped in, and doesn’t like it one bit, hollaring Help louder than i would have expected she could. And for a long time.
This kind of thing upsets everyone, staff and patients. I cannot comment on why the restraints, although she did yell, i can’t see. I just don’t know.
I know the facility was cited a few years ago for lack of a fall prevention programme, but i am not easy in my mind about whether strapping people into chairs is the way to go. But my own mother had to be restrained because, totally paralysed on the left, she never could remember that she couldn’t walk. The horror of it all almost overcomes me.
And now again.
Ten minutes later as i think i am getting him settled to supper, which he is eagerly in favour of, he grabs my wrist and starts trying to talk authoritatively about me never leaving. He doesn’t really have enough words to say what he means, and soon shrinks down into muttering, “You are so stupid.” Even as i laugh defensively and bitterly to myself, “well that’s the bottom of the barrel,” the words sting, because this has always been his greatest insult.
And so it goes, day after day, week after week, month after month. And despite changing circumstances, it has been year after year, moving into the second decade.
And i am thinking, this is enormous trauma. It is not just daily confrontation with the hideous loss of mind and the gruelling grinding care, but the continual endless assault on sense, on values, on reason, trashed by those who have no idea how destructive they are…. this so-called life in a Wonderland world, but not so pretty.
We are the survivors – endurers of this endless assault and this, like so many dreadful human experiences, is trauma. Our trauma though, could be helped with massive humanitarian intervention to help us cope, with constant understanding, monitoring, social work or therapists.
Instead we the survivors, like so many in this bitterly inhumane society, are left by the roadside, crippled and grieving and fatally wounded. By a disease not even our own.