Sir Terry Pratchett, Dementia Care and the Right to Live Joyfully at Home
Sir Terry Pratchett, the internationally renowned novelist was diagnosed with dementia in 2007 and it stunned him. He became one of the 47.5 million people living with a form of dementia worldwide; one of the 7.7 million people diagnosed with dementia annually and one of the new cases recorded every 4 seconds. Like so many others in his situation, the author was hurt and angered by the injustice of it all and condemned to stand helplessly, while day by day his posterior cortical atrophy (a rare condition) robbed him of his full self.
But he wasn’t a man to go quietly. While others might bow their heads and surrender to the ‘inevitable’, he began to ask questions…
Why should we accept the trajectory of the illness as inevitable?
Why is it that medical science can’t even say with any confidence what causes dementia or Alzheimer’s?
If the disease has been around for so long, why is it that we have made so little progress towards discovering a cure?
More famously, Pratchett demanded to know why a football club could spend more money on buying a mediocre player than the British government was prepared to spend on funding dementia research.
Between his diagnosis in 2007 and his untimely death in 2015, Pratchett worked tirelessly to raise awareness. From lending his name and voice to Alzheimer’s Society campaigns to increase funding for research and to improve the quality of dementia care in hospitals and care homes. Sir Terry took centre stage at countless conferences, spoke out in media interviews and demanded action from world leaders to stick by their promises to ultimately defeat dementia.
Sir Terry has also brought into focus a perhaps even more immediate issue. Right now, in 2016 we cannot offer a cure; we can only provide care. Due to the unpredictable nature of the condition, that care must be strongly person-centred and it must aim to deliver the best possible quality of life.
We at Daughterly Care salute the courage of a man who would not back away from a challenge. He declared:
“You can steal my memory, a cell at a time; you can trick my limbs into confusion and rob my eyes of sight but my joy, the joy that comes from being the person I am, you can’t touch that. It’s my life, my birthright and the homeland I will defend to my last breath.”
Like Pratchett, Daughterly Care has always supported the rights of Elders to live joyfully at home for their entire life.
Anyone familiar with our story — a true story you really must read — will know that we founded Daughterly Care over 21 years ago, in response to the need for Elders to receive better care than available in most institutions at the time.
We wanted to give Elders the option of living in their own homes, where they could preserve their dignity, retain their identity through close contact with family and friends and do the things that make them happy.
In particular, Live in Care (our most popular service) is designed to support Elders with high care needs in this very way and is a wonderful alternative to a Nursing Home.
From Judith, Daughterly Care Live in Caregiver
Just to let you know that my time with Jeanie was a delight. We gardened, chatted, did some housework together, sang a great deal, enjoyed some poetry and went for a walk over to the oval complete with a small bush walk to see the views across the valley to Chatswood and the City. We even stopped in the middle of the oval for a dance and song just because we could.
Appetite was excellent, fluid intake good and no problems. She slept through and was gracious. Lots of reminiscence despite her communication difficulties.
“Inside every old person is a young person wondering what happened to them…”
Sir Terry Pratchett
Terry Pratchett once said that “inside every old person is a young person wondering what happened to them”.
It’s an insightful comment and reminds me of a really great song I’ve always loved called ‘Hello in There’, by John Prine.
The song is all about how, as they grow old and stop work and the family moves away, many Elders become disconnected from the world around them and end up feeling lost and lonely. All because we as a society either don’t have time or have forgotten how to care for the person within.
But in fact it doesn’t have to be this way. We have specialised in dementia care for over 21 years with our in Home Care services. As part of our Joyful Living Approach™ we encourage our Elders to be actively engaged with the world around them, their friends and their family. They enjoy the personalised dementia care they receive and our aim is to assist them to live joyfully at home for life.
If joyful living is important to you or to someone you love, shouldn’t you at least consider the best alternative to a Nursing Home? There are no contracts required to use a Daughterly Care service so why not take Live in Care for a trial run? To discuss options or book a free private nurse care consultation, call Daughterly Care today on (02) 9970 7333.
Kylie Lambert B.Ec F Fin
(known to her friends for 25 years as Kate) Daughterly Care CEO, Co-Founder and Owner
Dementia affects Elders in many different ways, what is your experience of people continuing to live joyfully despite their diagnosis of dementia?
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