Devoted to helping Dad with dementia
Jane Bothello was surprised the day her father gave up driving. Out of the blue he announced he wouldn't renew his driver's licence and refused to say why.
“He was really evasive,” Mrs Bothello said. “We thought maybe he'd gotten lost on the way home or maybe had a near miss.”
As Arthur DeSilva was 80 at the time, the family let the matter drop. It later became obvious his memory was failing.
He struggled to find the right words. At restaurants he'd insist on paying, but money confused him. He forgot how to fill out cheques.
His doctor diagnosed Alzheimer's disease a year later. The family decided not to tell him.
“His sister died from it,” Mrs Bothello said. “When she had it, he said, ‘God please don't let this happen to me. I wouldn't wish this on my worst enemy'.
“People with dementia and Alzheimer's can get super-depressed and we didn't want that to happen to him.”
Seven years later, it probably wouldn't mean much to Mr DeSilva anyway.
“He remembers myself and my mother from day to day, but forgets who we are to him,” Mrs Bothello said. “He's always thankful though, and will say what a lovely woman my mother is.
“He will say to me, ‘Now who are you again?' and I'll have to tell him I'm his daughter.”
The family has had to learn to cope with the odd behaviour the illness brings.
“One day my mother came into a room and found it in darkness,” Mrs Bothello said. “All four light bulbs from the ceiling fan were missing.
“He'd taken them out and hidden them. We don't know why. Luckily for my mother, he doesn't wander like some people with his condition.
“Another time he was making iced tea and dropped candy in first before putting in the water. He couldn't understand why things didn't look right.”
Three years ago, Mr DeSilva joined an Action on Alzheimer's group.
The Club meets in Peace Lutheran Church Hall on Mondays and Thursdays. Members do crafts, sing, play games, listen to live music, chat and have tea and coffee.
“At first, my mother would take him and there were only six other people,” Mrs Bothello said.
“He was nervous the first time he went, like a lot of them are. They worry that they'll be asked to do something they can't do.” After a year, she started going with him to give her mother a break.
She was amazed to see the change that came over her father. There are now 33 regulars at the meetings; Mrs Bothello was so impressed she signed up as a volunteer.
“Tony Brannon comes in and plays music with them,” Mrs Bothello said.
“My father never sang a day in his life before he got sick. But there he was singing along to his favourite song, You Are My Sunshine.
“A lot of them just light up when they hear music. On the way home, I always tease him about the fact that he was singing. He always denies it.”
Mr DeSilva will then usually fall asleep in his favourite chair, remembering little of the morning.
“He's probably a little brighter though,” his daughter said. “He's been up and doing a little exercise. They sometimes get him to do a little dance. With dementia, we know he's not in any pain. He's just in his little bubble.”
On Wednesdays, the group meets at WindReach Recreational Village where they can have manicures and pedicures and have their hair done.
“I do it with Laura Fay,” Mrs Bothello said. “I used to be a hairdresser. They just love it.
“They like putting their feet in hot water and being fussed over. Even my father gets his nails done.”
Mrs Bothello has been to trade shows on Alzheimer's to increase her knowledge about the disease.
“I wanted to learn as much as I possibly could about how we could make their everyday life special,” she said.
“Even if they have reached the stage where they are totally in a shell and just look through you, they are still there.”
Mrs Bothello said her dad was still her dad despite everything.
“He has always been a very lovable dad and he is still that whether he realises I am his daughter or not,” she said. “People with Alzheimer's can live ten to 15 years or more with the disease [although] they get worse as time goes on.
“But they are not in any pain. They are in their own little world in there.
“If we can make an hour or two of happiness for them, then we have done our job.”
Attending the group is free.
• Action on Alzheimer's and Dementia is holding a wine tasting at Bermuda Society of Arts on Friday at 6pm alongside a dementia awareness exhibit. Tickets, $60, are available on firstname.lastname@example.org, 707-0600 or alzbermuda.com