Volunteering: Appreciating how bittersweet life can be
I was a boy when I first came across dementia. My grandmother had been in hospital for some time and my father had chosen until then to visit her alone. He warned me she wasn’t feeling herself in that protective but anodyne way that parents shield their children from life’s realities.
I remember Gran pulling my father close when we got to her bedside and asking him who I was in a voice shaking with confusion. I was thinking the same thing and couldn’t understand what was wrong with her or the fact that this was the same women who only a year ago had happily molly-coddled and fussed over me.
Adults seem so invincible when you’re young and when these gods of your world stumble and fall it is difficult to understand. It was only years later I realised how heartbreaking it must have been for my father to see the person he loved being slowly eroded by an illness for which there is still no known cure.
This experience was echoed more recently when I found my 94 year-old neighbour wandering outside in the street in the small hours of the morning. Ethel didn’t know where she was, despite standing within sight of the flat she has lived in for more than 60 years. She had the look of someone who’d woken into a nightmare and found themselves in a strange land with no way home. And I guess that’s where she was.
She died two months later in hospital as many do when taken from the familiarity and independence of their own homes. The death of this plucky widower who had lived through two world wars affected me and made me think about volunteering. I’d considered the idea previously following the death of a different neighbour whose body lay undiscovered for several weeks while we carried on life unknowingly above him.
I’d let that good intention fall by the wayside in the way that youth rarely has time for anything but itself on top of the thought of all the form filling, training, travelling and raft of other convenient excuses.
However, this time the idea of making a difference stuck and a week later my eye caught a poster asking for volunteers as part of an elderly befriending project.
I went to see the group involved who said what they really needed was volunteers who could visit older people in varying stages of dementia. I was surprised by how much I initially recoiled from the suggestion and how deep rooted and prejudiced my opinion of mental illness was without realising it. Thankfully, I signed up despite being less saintly than I first thought.
It’s been a year since then and a journey that has confounded a lot of my beliefs about care, compassion and mental illness and the simple fact that people want to be treated as people irrespective of their age or condition.
The biggest surprise was Byron.
This funny and engaging 74 year-old is not what I expected. He’d already spent several years in a care home and was in the early stages of dementia meaning he remained largely lucid.
Byron’s stubborn refusal to ‘sit and wait for the end’ makes him one of the home’s real characters prowling the corridors in his sheepskin flying jacket with his gallows humour and endless supply of jokes.
I’ve learnt a lot about dignity and spirit from this man who still says he looks in the mirror every morning and is surprised to see his hair has turned grey. Byron embodies fellow Welshman Dylan Thomas’s sentiment that we should all ‘rage, rage against the dying of the light’ and is a great example of someone who believes life is for the living.
He’s a natural prankster and his constant stream of jokes always make me laugh including him bemoaning the fact that no-one gets out of the care home unless it is ‘first feet in an ambulance.’
Thankfully, we provided that theory wrong recently when we made a break for the border.
It was a text book escape Steve McQueen would have been proud of although we swopped the motorbike and Swiss border for a No. 71 bus and the local shopping parade.
I handled the door entry code to get us off the ward while Byron, that sweet talking silver fox, charmed his way out of the front door with the assurance that we were just taking our weekly walk around the green.
Instead, we hopped on a bus and spent the next hour seeing the sights. It was nothing out of the ordinary for me but for Byron it was a rare chance to see the outside world. It made me realise that it doesn’t take a lot to make a difference to someone’s life and I enjoy my weekly visits as much as he does.
Byron’s dementia isn’t overly noticeable although you can see it quietly gnaw at the edges of his mind in some of the repeated questions, anecdotes and little squalls of confusion he wrestles with.
Questions are a powerful way of helping people with dementia reconnect with themselves to some degree and during the course of my hour long visits I can see how they re-open a succession of doors in his mind giving us more to talk about.
His memories reflect how bittersweet life is with all its twist and turns.
His father surviving the horrors of WWI including the great battles of the Somme and Ypres; the lonely death of his beloved uncle whose own sons refused to bury him; and the touching story of his mother’s front door key which is the sole keepsake he choose from among her possessions.
He laughs about the time his teenage friends threw his trousers in the sea and he had to cycle 60 miles back to London in his underpants; how he gave modern-day speed daters a run for their money by getting a date with his wife-to-be in the space of a 15 minute bus journey; and playing countless practical jokes including putting a house brick in a homeward bound workmate’s bag and filling another’s umbrella with shredded newsprint much to the amusement of commuters when he opened it.
This gruff sometimes belligerent man also shows a softer side that is nothing less than touching. He sings love songs to his wife when she rings, keeps a photo of her under his pillow and picks flowers from the garden when she visits.
What is most surprising is the effect volunteering has had on me.
It’s made me more patient and understanding. I’ve learnt the value of listening – fellow men take note – as well as realising that action speaks louder than words and we can always find excuses for not doing things instead of excuses for doing them.
It’s even, in a roundabout way, helped me get a job with a mental health trust in north London although it is an office based rather than clinical role.
Many of us express how dissatisfied we are with our jobs because there is little sense of personal contribution or making a difference. Volunteering is a small but important way of meeting that need.
It doesn’t have to be grand or noble or involve more than an hour or two a week. It is about helping others but in a strange way it’s about helping yourself too.Tagged in: alzheimers, dementia, health, hospital, mental health, volunteering
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