A gift of beauty

or, helping my Papa Bear.

Papa bear has forgotten a lot of things. How to open an envelope, how to use a pen, how to open a door. The little things the rest of us take for granted are a mystery to the synapses in his brain. I imagine the signals that once ran in an orderly fashion, knowing exactly where to go and what impulse to trigger, now wander lost, with only scant memory of the important role they once held.

Today, he forgot how to use a toilet.

Photo by Stefano Bucciarelli on Unsplash

He knew what the sensations in his body were telling him, he knew he needed the toilet, but didn’t know where to go. This is a common occurrence now, so I guided him to the bathroom with no fuss.

Once there, he became agitated and distressed, struggling to articulate his words. I stroked his arm, not sure yet what the issue was. To be with dementia is to be a sleuth: always looking for clues and signs in facial expression and behaviour to decipher what your person is wanting or feeling.

‘What do I do?!’ he asked eventually, his worried eyes searching for help. ‘I don’t know what to do?’ His face was that of a young child, confused and frightened.

I realised Papa bear didn’t know what the toilet was. Didn’t understand its purpose, or how to use it. In his mind, in that instance, a bathroom was a foreign land.

His panic was escalating, so I did what I always do in these situations, I connected with my spiritual self and shone a beam of loving light from my heart to his, bathing him in an essence that bypasses the brain, communicating with nothing but the light of familial love. In a place where words have become obsolete, it shows him he’s safe, he’s loved, and that all is well.

As he calmed, I gently explained how the toilet worked, using as few words as possible, and speaking slowly, every word wrapped in reassurance. If I go too fast, if I’m hurried or impatient, I lose him. I have learned this over time, patience is dementia’s best friend.

“So I sit here?” He asked, pointing to the toilet.

“Yes”

He looked at it, doubtfully, and back at me, and back at it.

‘I sit here?’ he asked again.

‘Yes’.

He began to shuffle towards it but he was still dressed. In that moment, he had also forgotten how to undress, or that he even had to. It was a bad dementia day. So I undressed him, and helped him down to the toilet seat. His body took over, and did what it has done for 86 years on autopilot. Afterwards, I guided him back outside, and within a few paces, all was forgotten. A smile had replaced the frown.

I recounted this latest episode to some friends and they were nothing short of horrified. Horrified at the thought of a family member having to get so involved in a task that is normally so private.

“Just bloody shoot me if that happens to me,” said one.

“That is the worst possible thing ever, for any child to have to do, it’s horrendous,” said another.

It’s not an uncommon reaction for those who have no experience of dementia, perhaps I would have thought the same once. But I felt neither sentiment.

“No,” I said, “It was a gift of deep beauty to have helped him.”

And I meant it.

To be so present for something that most would shy away from, that most run from, is a privilege. It is a privilege to help the man who brought me into this world, as he begins his path out of it. To be his copilot when his brain fails him, and to support him in a moment of such raw vulnerability. Taking the distress out of my Papa Bear’s eyes has no price. It means something I’m not sure words could ever articulate. It is a life well-lived.

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