‘What I want for Luke is some dignity of life’
A drive to bring a better life to a bedridden hospital patient born with a crippling disability is nearing its finish line.
Luke Caines, 62, lacked formal identification and basics such as a bank account after spending life in King Edward VII Memorial Hospital since the death of his mother when he was 14.
Carol Everson, who has obtained power of attorney to advocate for Mr Caines, is now authorised to raise funds on his behalf – and hopes to have him qualify for financial assistance to supplement his care.
She said she discussed his plight last week with Tinée Furbert, the Minister of Social Development and Seniors.
Struggling to communicate through his severe cerebral palsy, Mr Caines told The Royal Gazette he would enjoy getting any sort of visitors at Perry Ward in the hospital.
“Anybody can come,” he added.
Funds from social insurance provide just enough to cover Mr Caines’s basic Health Insurance Plan at about $500 a month.
But Ms Everson aims to raise funds towards his increasing care needs as Mr Caines gets older – additionally hoping to cover the expense of a more stimulating existence for him.
“I can’t abandon him to this – he deserves to have some quality of life, something more to look forward to,” said Ms Everson, who first became aware of Mr Caines almost 20 years ago when she visited the hospital to volunteer for music therapy.
“He was in a wheelchair and seemed quite well. He was very cheerful – I have never heard a sad word from him.”
His family have been unable to provide the around-the-clock care that Mr Caines requires, and have said his level of disability is too great for an independent living facility such as Summerhaven in Smith’s to accommodate him.
Ms Everson obtained power of attorney in 2015, when Mr Caines hoped to live outside the hospital.
The move proved impossible, but Ms Everson said last month she would “try to make Luke’s life a little bit better” as he gets older.
“I can’t promise, but I will do my best,” she added.
Ms Everson is also a case worker for Bermuda’s war veterans and widows through the Bermuda Legion – but emphasised that her advocacy for Mr Caines was personal and not linked to the charity.
Last week, through officials at Clarien Bank and using new identification that she acquired on Mr Caines’s behalf, she was able to apply for a bank account in the hope it could receive his stipend from social insurance for better control over the use of funds.
Ms Everson also obtained a charitable fundraising licence through the Registry General’s office to appeal to the community to improve his life.
“He’s just in a room by himself most of the time with nothing to stimulate his life,” she said.
“What I want for Luke is some dignity of life. Obviously it is difficult for me because I am in England. I don’t have funds of my own that I can provide.”
Ms Everson said her concern has deepened as Mr Caines approaches old age.
“What if he suffers a heart attack or a stroke? I took on power of attorney because I wanted to help safeguard Luke if he was in a serious situation and needed help.
“Ideally, we could get him in a decent nursing home where he would probably have a lot more to do and opportunities for outings.”
Ms Everson said she applied for Mr Caines to receive financial assistance for more amenities such as a television or music, or new clothing.
“I would like him to get more belongings to make his life more worthwhile. As things are, he has little else but bare walls and the ceiling.”
But she said the attempt to secure financial assistance “got somewhat Alice in Wonderland” when he was turned down.
“I was told he didn’t qualify because of the small grant he receives a month,” Ms Everson said. “Luke does not even see it, but because of that, he can’t get financial assistance.”
She said she planned to appeal the decision, hoping in the meanwhile that possessing identification and a bank account could give Mr Caines more of a legal presence – as well as enabling fundraising to bring more stimulus into his life.
Effectively quadriplegic, Mr Caines has received perks over the years through charity: at one point when he lived in KEMH’s Continuing Care Unit, staff pitched in to get him cable television.
In 2010, Mr Caines’s family raised funds to acquire a new wheelchair for him. Ms Everson said it appeared his sister had since left the island.
Efforts by the Gazette to contact her were unsuccessful.
“Anything we can get for him beyond what social insurance covers is where fundraising will be helpful,” Ms Everson said.
She added that she would go public once Mr Caines’s Clarien account was approved, enabling her to raise funds directly on his behalf. “Whatever I can do, I’ll do,” she said.
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