Positive Possibilities (Community story)

Community story

By Claire Hoole © dementiacareinternational

My mother and I were first introduced to Jane Verity when my father was diagnosed with rapid onset dementia. He was only 65 and it was a very great tragedy for our family. Our initial understanding, gained from (medical-centred) reading, from observation and conversations, and from previous experience with others who had dementia, was that this would be a long, hard journey, fraught with trauma, pain, tremendous difficulty and alienation from our loved one. Certainly we had no understanding that there could also possibly be a positive angle to this disease that seemed to have robbed us of a husband and father, grandfather and friend. We were devastated.

Then we met Jane Verity. Raw with fresh pain, feeling powerless and trying to muster the resolve and fortitude to grit our teeth and endure the suffering, we attended a morning talk at a local residential aged care facility. What we saw, heard and learned that day changed our lives. Rather than adding to our understanding of doom and gloom, our hearts and minds were blown apart with hope, possibility, delight and even joy. We cried with gratitude. We also laughed – both with relief – and because Jane has a brilliant sense of humour!

We were deeply impressed by Jane and her Spark of Life Philosophy to dementia. She was totally engaging – captivating! Jane’s extremely warm & compassionate manner; her enthusiastic, articulate and ‘chatty’ presentation style, filled with everyday examples, really enabled us to easily receive and understand the vital learning she was sharing with us. Perhaps, more importantly, Jane helped us to feel empowered and confident to implement our learning as we related with Dad – with the full expectation of a successful outcome. We were totally transformed. So was our relationship with Dad.

My father had grown up in an English home, where physical contact was limited to a handshake and emotions were kept closely guarded. When he was 7, he went to boarding school; so it will come as no surprise that this ‘arms’ length distance’ impacted the whole of Dad’s life, and therefore ours. As we learned how to better relate to Dad; how to open up both conversation and possibilities with him, Dad also responded positively and we found ourselves relating to a joyful, affectionate and playful man who was quite delighted with life. Gone were the inhibitions, reserve, seriousness and the demeanor of a man who had been carrying the weight of the world on his shoulders. Gone were the emphatic, ‘NO’s!’ (every time we tried to encourage him). We felt so blessed to be able to enjoy Dad like that for a while. It was a pure gift.

Because Dad’s illness was rapid and soon became further complicated by a fast growing cerebral lymphoma, he soon lost motor function and quickly retreated into his mind. Many factors led to him needing to be placed into an aged care home. This was the hardest thing to do, but we spent lots of time there and we really enjoyed relating to other residents using the Spark of Life Philosophy we had learned from Jane. It was wonderful to see such positive responses. Even when Dad was unable to leave his bed, he responded well to hugs and touch; and to singing, which he’d always loved. Using Jane’s Spark of Life Philosophy to invitations, we had no trouble encouraging Dad to become involved in activities, such as concerts and story-telling, and particularly anything with a spiritual aspect. At these times, Dad seemed particularly ‘present’ and it was as though a light had gone on inside him. These moments were deeply meaningful to us, and it was clear that they were deeply meaningful to Dad too.

Dad died 2 years after his diagnosis and it’s interesting how much this experience has affected me, particularly as I reflect back. It greatly changed the course of my life. I am now heavily involved with leading funerals; I’m studying for a Certificate III in Aged Care; and I’m working as a Chaplain for Blue Care. I work largely in the area of aged care, because I am particularly interested in spending time with those who have dementia and sharing Jane’s life changing, positive Spark of Life Philosophy, to enable them, their families and their carers to experience life in all its fullness, by unlocking the Spark of Life that is within each one.

I am particularly interested in further exploring the way in which connecting with a person’s spirituality enables them to be more noticeably ‘present’. There is much I want to relearn, cement, share and implement with others; so it was truly wonderful and amazing to reconnect again with Jane Verity recently at another of her amazing workshops and to say how thankful I am for her powerfully positive and empowering presentations and to share how well they worked in my own family’s experience. Jane has inspired me to inspire others to change ‘our’ attitude toward dementia and those who are affected by it, from one of hopelessness and doom to one of hope, empowerment and joy.