Caring for a couple with such different needs can be very challenging at times. Prior to their ill health this couple had travelled extensively around the world and experienced many happy times together. However, J’s Parkinson’s diagnosis and the accompanying frailty meant his mind was active while his body was not.
Caring for a couple with such different needs can be very challenging at times.
Prior to their ill health this couple had travelled extensively around the world and experienced many happy times together. However, J’s Parkinson’s diagnosis and the accompanying frailty meant his mind was active while his body was not. He was now permanently in a wheelchair. B, on the other hand, was extremely active, a lover of music and dancing, but could no longer retain or remember things – including the fact that J had always been profoundly deaf. B was J’s connection to the world as she had always been his translator and would communicate things people said by clearly pronouncing her words so that he could lipread.
Without this key link, J felt his world becoming smaller and smaller. Sadly, B’s joy seemed only to exacerbate his sorrow and he would vent his frustrations in hurtful ways. He became increasingly insular, isolating himself in the front room, agitated whenever we ventured in to see him. He would gaze longingly out of the window, his head curled permanently in a frown.
Sometimes challenges at work can pave the way for breakthrough moments. One day, I learnt the power of perseverance and how a little humour can ease distressing situations.
A song was playing and B lovingly sang the words to her husband. He angrily shooed her away with a flick of his hands. Undeterred by his aggressive behaviour, I grabbed a whiteboard and wrote: “She just sang ‘I just can’t stop loving you’, J, as Elvis is playing”. His eyes softened and the barrier he tried so hard to keep up seemed to drop a little. The next time she approached him, he grabbed her hand and pulled it to his face. They remained there together for a moment in this loving embrace. Enthused by this rare moment of tenderness, I hurriedly wrote another note. “J, come join us in the conservatory, it would make B so happy to sit with you, she loves you so much”. To my surprise, he agreed and allowed me to push his wheelchair over the ramp. It was there every day but prior to this day he had always refused to join us.
As J and B sat side by side I laid out bird seed, leaving the conservatory door ajar so J could feel the slight breeze on his face. I sat next to B and we opened up one of her multiple travel albums of times gone by. J glanced sideways at us. Tentatively, I offered him a sheet of paper. He tended to angrily reject any activity I offered to do with him. But I was taken by surprise as he took it and read it. After, he handed it back, then nodded and smiled. Spurred on, I offered him the next page, which he read, before again nodding and smiling. I was so taken aback by John smiling, a rare and precious moment to be sharing with him. B had written eleven pages on this particular adventure to Egypt. J read them all and smiled at every page. And as the birds gathered in the sunlit garden eating the bird seeds, I relished the day that J smiled eleven times.
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