Watching for things said without words
My father had vascular dementia. This was a slow erosion of mind and physical function. It was like a tumble down a flight of stairs in fits and starts – a sudden decline, a rest on stairs and then a tumble further down. Bump, tumble, fall. Bits of cognitive function lost. A dragging foot. Loss of balance. A rage and an obstinance. A story on repeat.
He was a proud man. He liked to be clean shaven. And in the mundanity of this daily ritual of razor and soap, there came the things that were being said without words. If only we had noticed.
The carers who shaved him mentioned his resistance to being shaved. I bought new blades. The resistance continued. A stubbly moustache grew. Not his style at all. He can’t help getting cranky we said.
A rage and an obstinance. A story on repeat.
Sometimes when feeding him, he would suddenly turn violent. A malevolent glare and a grasping for the spoon, twisting of fingers, cutlery thrown across the room. It seemed irrational. Dementia we said with a sigh.
Time robbed him of words. Where once there had been tall tales and an ocean of general knowledge, there was now a wordless atonal tone. An aaaagh. An eeeeee. I have often wondered what that vowelled torture felt like on the inside of it.
When he was dying and he was parched but couldn’t drink, I would gently place a wetted swab in his mouth. I would picture water after drought. Relief. His eyes told me he was grateful. Time passed. Another swab, and then the rage came, strident with the grabbing, the horror of a dying man hitting his daughter. His anger sparked mine, followed swiftly by shame. How could I be cross with a dying man? Shocked. Just trying to help. Please don’t let dementia intrude on the intimacy of death I prayed.
Hours turned into days. Like birth, death can take time.
Prayers do sometimes get answered and over those days there was also much tenderness. Companiable silence. One-sided dialogue and thankful eyes. His hand holding mine. Then my hand holding his. I turned his television on and remember watching The Chase. He loved quizzes and so there we were: the daughter and the dying man and Bradley, the rat-tat-tat of Q and A. Memories banked in the kitty. I wished I had done this earlier.
Ritual that draws us together to help us part.
After my father died, I washed him. Then I oiled his body just like the ancient Greeks and the Egyptians would have done. It felt so sacred. He would have liked that stepping into history through ritual. Ritual that draws us together to help us part.
I noticed his mouth. Open. I looked up into it as I tended to his body and there was the answer to the anger and the grabbing. Most of his palette was abscess. I wept. I couldn’t imagine the pain he must have been in. He told us with violence, and we saw the only rational answer we could think of. Dementia.
Einstein once said, “If you look deep into nature, then you will understand everything better.” I didn’t look deeply enough into my father’s nature. I stopped at the diagnosis and I did not observe the patterns that were the clues. The rage that only came with the razor, the spoon or the swab. This still makes me weep.
As we care for people, how deeply are we observing them? Digging beneath the diagnosis.
What are the things being said without words? As we care for people, how deeply are we observing them? Are we digging beneath the diagnosis. Trusting in human nature more. My father gave me a message to pass on to those caring for people bumping down the stairs of cognizance and decline. “If something seems irrational, there is usually a rational answer to it. You need to watch for the things being said without words.”
Here at the Centre for Nature Connection you can find coaching and training for non-medical, nature-centred support for illness and end-of-life care.