Patient says dementia ‘not end of the world’
PACK your bags and get your affairs in order was the first bit of clinical advice early-onset dementia patient Phil Hazell was told.
Never mind the fact he was already doing everything he could to live with the condition within his own environment.
He also had to contend with finding a GP willing to take him on as a new patient. Four phone calls later he finally found one who was open to spending time with him.
Mr Hazell was diagnosed with dementia in his mid-50s and kept working as an optical laboratory representative with the support of his Melbourne employer until he resigned three years later.
“The real impact is I was diagnosed at 55 and now I am 60 and it’s only going to get worse to be perfectly honest,” Mr Hazell said. “I still have a bright outlook on life. I’m not a half glass full, but a full glass full.”
He’s been doing a lot since stopping work. The frustrations of dealing with some people in the medical profession who seemed not to want Mr Hazell to continue living a full and engaged life has driven him to be proactive in his advocacy work – profiling how people with dementia can, in its early stages, live well and outside of care.
“I’m not cactus yet,” he said. “If I don’t get it done quickly in the next five or 10 years, I won’t get anything done. It’s getting quite urgent.”
Mr Hazell is an advocate for Dementia Australia, chair of the Dementia Australia Advisory
‘‘ I’M NOT CACTUS YET. IF I DON’T GET IT DONE QUICKLY IN THE NEXT FIVE OR 10 YEARS, I WON’T GET ANYTHING DONE. IT’S GETTING QUITE URGENT. PHIL HAZELL
Committee, an advocate for assistance dogs for dementia and is participating in research trials.
“In one of these I mentor people who have just been diagnosed with dementia so they can see it’s not the end of the world,” he said. “I am a living example of living well with dementia.
“With dementia, it’s not all the time that you are living with it,” he added. “Sometimes it can be one day out of a fortnight or a couple of days a week.”
Mr Hazell is responsible for keeping the home tidy while his wife Jan is out at full-time work. He also does some cooking.
When it comes to exercise, he says he is “slack”. “I should be doing it, absolutely.” He does get moving when he walks Sarah, his assistance dog.
Sarah is with him everywhere, flying around Australia as he takes his living well message to all states. The specially trained labrador even has her own boarding ticket that she carries to the check-in gate.
If he gets lost when he’s out of the house or gets confused, “Sarah comes in very tight and cuddles me,” he said. “That gives me the chance to sit down for 10 minutes and get my mind back as to where I am or what I should be doing.”
Sarah finds Mr Hazell’s keys, phone and wallet before he leaves home each day.
“If I can’t find these items I literally can’t get out of the house.” And that is critical to Mr Hazell as he is on the move as much as he can for as long as he can.
His advice to people with dementia and those caring for them is to contact the counsellors on the National Dementia Helpline on 1800 100 500.
“I was at my wit’s end and they listened to me, and when I got off the phone, I felt a lot better,” Mr Hazell said.