A group of friends providing around-the-clock care for their terminally ill friend are appealing for help so he can carry on living in his own home for as long as possible.
Trelawney Whitehead, 47, has the degenerative hereditary condition Huntington’s disease.His friend Robyn Petrie-Ritchie cares for him in the bungalow in Drewsteignton where he moved 18 months ago.
Horsewoman Robyn first met Trelawney — whose glamorous former life involved dividing his time between Ireland and Italy — when he was being passed from pillar to post within the care home system. The once accomplished surfer had been diagnosed with the same hereditary disease that killed his mother 12 years ago, within two months of her death. There is no cure.
Robyn, who also lives in Drewsteignton, explained that she had taken on the responsibility of caring for Trelawney afer meeting him while running animal therapy sessions at Made-Well centre at Hatherleigh. Trelawney had an affinity with her ponies but he ’didn’t fit’ with the care homes where he had been placed â?? for either elderly people or people with severe learning difficulties.
Robyn resolved to organise care for him herself. At first this was in the flat in the village where she was living at the time. Finally, with help from a local GP and sympathetic social workers and occupational therapists, she has been able to secure Trelawney a bungalow close to her own home in Drewsteignton.
Here she, her partner and two others have been providing care in 12-hour shifts for him. With their help, he can also still enjoy the great outdoors, riding his bike through the village and spending time with Robyn’s horses and ponies.
’We are in a situation where we have got everything in place for Trelawney,’ she said. ’He has got his own little bungalow which he is renting from a local trust and he has a care.
’We are struggling though to recruit people, though, to help us care for him.
’We had a core group of four of us, but we lost one of our team in a terrible car accident a few weeks ago, which has resulted in a lot of difficulties for all of us,’ she said.
She said the thing she wanted to avoid was Trelawney going back into a care home, where he lost weight dramatically and had to be heavily sedated due to his unhappiness.
’We want to share Trelawney’s story. He is in so much a better place than he was when he was in the care home system,’ said Robyn.
’Huntington’s is so horrendous in so many ways, you start to break in every department — physical, mental— but mostly your comprehension stays really good, which is difficult because you understand everything but you can’t express things.
’His ability to swallow and to speak are very bad now. He does try to get words and sentences out but it is getting harder and harder.’
As the person who has been championing Trelawney’s care for the past four years, Robyn wants to be there for Trelawney for the rest of his life if she can. She added: ’I live very close by with my partner and we both look after Trelawney, with others, so I am on hand. Trelawney is my best mate, he is a charmer. He has this really unusual comical site to him which shines thorugh everything else.’
Contact Robyn on 07752 382750 or [email protected]