Robyn met Trelawney in 2017 while she was working in a day care centre. He was in a care home at the time and attended the centre daily. Trelawney was struggling to be heard due to his debilitating illness, Huntington’s Disease (HD).
Robyn discovered ways to help him to speak more clearly and, after getting to know him well, has fought for his wishes to be heard ever since. HD results in complex needs developing; your ability to express yourself is vastly reduced but your comprehension remains mostly good. This means it is very hard to be understood and make your feelings heard.
Trelawney lived a full and active life before becoming ill in his late 30s. He was an accomplished surfer, had travelled the world and worked as a waiter in some of the most prestigious hotels including the famous Savoy Hotel in London and the Westbury in Dublin. It is little surprise that he struggled so much with being put into full time care.
Robyn says: “Due to the difficulty in expressing himself, Trelawney was thought to have ‘lost the ability to feel the emotions he was outwardly showing’. When this was said to me by a manager in one of the homes, I realised that I could not simply walk away; this was the beginning of a steep learning curve into the ‘care’ system for me!
‘I found this comment disturbing. With a background in studying animal behaviour, I couldn’t help being interested by the fact that simply losing the ability to speak ‘normally’ resulted in an assumption that there was also a reduction in sentience.”
Robyn has dedicated the past four years to ensuring Trelawney has as happy and as active a life as is possible, and he is now supported with a wonderful care team at home. However, with regulations constantly changing they are facing huge challenges to keep Trelawney’s wishes heard and keep him at home. His friends would love to support him through the entire illness. He watched his mum being moved from one facility to the next and his one wish from the beginning is to stay out of residential care for as long as possible.
Trelawney’s mum passed away after a long battle with HD and he was diagnosed just months afterwards. As a relatively young man of 47, it is hard for him to fit into any of the care facilities available and he found himself having to be heavily medicated to cope. He was on a cocktail of medication when he came out of care. He went through the terrible process of drug withdrawal, with Robyn, living in her tiny council flat. “It was one hell of an experience to go through with him. There were night terrors, projectile vomiting and hallucinations. We were supported by a great doctor and neurologist, and we got through it. This has meant that although he is struggling with all the difficulties of HD, at least he is not heavily medicated with continual counteractive medication.”
With so few people (between 6,500-8,000) in the UK suffering with the disease it is often overlooked and research is massively underfunded. The disease is slow and painful for the sufferers and for their families/friends to witness.
Your ability to swallow disappears, as does your ability to speak and to perform all normal tasks. The disease causes gradual degeneration of the brain, mental health issues and awkward jerky movements, which are hard to manage. However, Trelawney is showing everyone that even when your ability to speak, walk, conceptualise the world around you and stick to social ‘norms’ disappears, your ability to feel, laugh, share and connect with people remains strong, if not even stronger, than it was before. Robyn and the small team of carers are desperately in need of support to keep Trelawney living happily at home.
Robyn says: “Primarily we need to increase his team of personal assistants to ensure we can continue to provide round the clock care. We also need to find someone with experience of being an employer willing and able to volunteer to act as an employer on Trelawney’s behalf.”
If anyone is interested in finding out more about these roles, please contact Robyn directly.
E-mail Robyn Petrie-Ritchie firstname.lastname@example.org
Call Robyn on (01647) 281658 or 07752382750
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