practical alzheimer'sWritten by Darren Gormley

A few years ago I was contacted by a speech therapist who asked if I would visit Mark, an 82 year old man diagnosed with mixed dementia. The speech therapist had been working with Mark as part of his post-stroke rehabilitation and asked that I continue by facilitating social engagement at home once a week.

Halfway through our first session I removed my jumper, my tattoo of Jesus becoming visible in the process: Mark’s posture completely changed, pointing he said “Do you know Jesus’ last words?”. I embarrassingly admitted not. Mark replied “His last words…Father why hast thou forsaken me”.

The apparently innocuous revelation of my tattoo had resulted in Mark agreeing for me to return every Friday morning on the condition that we discuss the meaning of this scripture. I felt somewhat out of my depth agreeing to discuss a topic I knew little about but was optimistic this charming man had something important to say on the matter.

It became apparent over the subsequent months as Mark shared his personal life story with me, from his early years right through to his diagnosis of dementia, that the feeling of being forsaken was very much at the forefront of his mind. Our weekly conversation became his way of making sense of what he was feeling at this particular time in his life.

What Mark didn’t know was that I too was in a rather dark place. I was 24, it had been eight years since my father had unexpectedly passed away, his loss had eventually caught up with me despite my best attempt to push through the grief. In truth I was lost in my own grief: I felt an overwhelming sense of loneliness and couldn’t see a way out.

I recall one visit to Mark in particular. I was feeling low but trying my best not to show it through the use of what I call the mask of professionalism. In contrast Mark was in fine form, full of laughter and joy and very philosophical despite the apparent obstacles he was facing in his own life. I have experienced this on a number of occasions working with people with dementia: an intuitive emotional sense of what others are feeling.

Towards the end of our hour, completely out of the blue, Mark told me he lost a very close family member when he was young and that a day hadn’t gone by without him thinking about it: a story I later discovered he had never shared before. He described with immense detail and fluency the grief of not being able to see the wood for the trees. It was as if he had climbed inside of my heart.

After leaving Mark that day I walked into a local charity shop and on the wall hung an amateur painting of a forest with a path. As soon as my eyes met the picture Mark’s description came to the forefront of my mind.This picture symbolised something for me. It was as if the path in the painting was telling me there is a way out of this.

A few weeks later I received a call from a colleague to inform me that Mark had peacefully passed away in hospital. I remember exactly where I was standing. I can still feel the warm tears running down my face desperately trying to mask my feelings while on the telephone. My only regret was that I never had the chance to tell Mark how much he inspired me, how much he helped heal me by sharing his own story so openly and honestly. I sometimes wonder whether he knew on some level what was going on in my own private life.

This experience taught me the importance of recognising the value of what I feel as a human being working in social care. Before this I was a highly rational, logical, professional who thought reason alone was enough. I think many professionals like me are scared to admit what they feel for fear of being labelled weak or unprofessional. For many this builds up over the years. But by cutting-off our own emotions we simultaneously deny the emotions of those we aim to support.

This is not just a lesson for individual professionals but for organisations too. Leaders within organisations need to nurture a long-term culture of care that acknowledges the feelings of those they task to deliver frontline services. As one great thinker put it: “People change less because they are given analysis that shifts their thinking than because they are shown a truth that influences their feelings”.

As for me and my memory of Mark, I only have to look above my desk at home for a split second to remind myself of the lesson he taught me [painting above]. It is a reminder that emotional intelligence is just as important as academic rigour. Perhaps this post represents my way of thanking him for helping me through a very difficult time in my life. Something I will never forget.

 

Darren Gormley is a Philosophy graduate from Middlesex University and has been working with people living with dementia at home providing post-diagnostic, psycho-social support for over six years

To learn more about Alzheimer’s disease, click here 

Further Reading: Kotter, J.P. and Cohen, D (2002) The Heart of Change: Real Life Stories of How People Change their Organisations. Boston: Harvard Business School Press.

Lapinska, Danuta (2009) Person-Centred Counselling for People with Dementia: Making Sense of Self. London: Jessica Kingsley Publishers.

 

[Mark = pseudonym]

  

Practical Alzheimer's

The Practical Alzheimer’s team (http://practicalalzheimers.com/) brings together practical information on living with Alzheimer’s and the latest news and views on the disease, informed by medical opinion and patient experience. We regularly meet with specialists in Alzheimer’s and dementia to make sure the content we produce is credible, relevant and newsworthy. We also seek the views and feedback of those living with Alzheimer’s. Email the team at: info@practicalalzheimers.com

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