Lifestyle ColumnistsNeil McKenty
To Montreal mayor Gerald Tremblay, whose 95-year-old mother lives with Alzheimer’s Disease, the illness means unity and the strenghtening of family bonds. “The message of Alzheimer’s is to stay united,” Tremblay told an excited crowd gathered at Beaver Lake, preparing for the 5-km Annual Memory Walk, organized by the Alzheimer Groupe and the Alzheimer Society.
When volunteer walker Angela Jones’ beloved Grannie Hartley was diagnosed, Jones did not despair. “As long as I visited her constantly, she didn’t forget me or my dad,” she said. “Alzheimer’s means patience.”
Helen Fotopulos, mayor of Plateau Mont-Royal and member of the executive committee of the city of Montreal, called the disease the “longest funeral a person can experience, because the relationship is interrupted but the person is still there.”
Fotopulos, whose mother was diagnosed 13 years ago, talked about the guilt and the fear that still surrounds the illness. “We all have jokes about Alzheimer’s.”
She spoke of the need to get the illness “out of the closet,” especially in our cultural communities where language is an additional barrier to seeking help. As well, we must work on behalf of natural caregivers, the family members, to break their isolation. “We have to make people feel they’re not alone, and that many people share this.” However, the work that must be done doesn’t materialize out of nowhere. “All this takes money.”
Despite a distinct chill in the air, participants were raring to go. Dogs and children made up part of the enthusiastic army, uniformed in oversize white T shirts proudly displaying their sponsors’ logos. Zachary Nurse and Niv Turecki, both 9, knew exactly why they were participating in the fundraiser. “Alzheimer’s Disease makes you lose your memory,” said Zachary. “It’s like having amnesia all the time,” added Niv.
Each year brings more participants, said Terry Fishman, who, with the Alzheimer Groupe, first brought the march to Montreal while caring for her father. The Alzheimer Society joined in the second march and in the one this year. “The first time we had 80 walkers, then 120. This year we expect 200,” Fishman said. “The money will be used for research, both nationally and locally.”
Laura Guerschanik was gratified to see the large turnout. “It’s important for families to come and walk and not be ashamed.” As coordinator of education for the Alzheimer society, she disseminates information in several languages. “We give workshops in English, French, Spanish, Portuguese, and I have contacts for translation in the Chinese, Vietnamese, and Haitian communities.”
People touched by Alzheimer’s need information and support, said both Fishman and Guerschanik. Alzheimer’s is an illness that can last for years, and one issue is the patient’s quality of life. Early treatment, through counselling and medication, offers Alzheimer’s patients the hope of maintaining a high quality of life as long as possible.
A second major issue is caregiver burnout. Family members must learn to take care of themselves. The better they understand the illness, the better they can deal with behavioral changes. “Alzheimer’s is an insidious disease that takes over the whole family dynamic as people change,” Guerschanik said. Both organizations offer caregiver workshops for patients in the early stage of the disease.
Mélissa Bellerose of the Alzheimer Society said that the health care system doesn’t seem prepared to deal with the sharp rise in numbers of affected people. One Canadian out of 13 has some form of dementia. “I don’t think they’ve looked at the question seriously. None of our money comes from the government, it’s all from fundraising. All the responsibility seems to fall on the family and community organizations.”
Reach the Alzheimer Society of Montreal at (514) 369-0800 and the Alzheimer Groupe at (514) 485-7233.
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