People in the small community of Maillardville probably know the Boyers. They likely see the couple walking in their neighbourhood or up to Our Lady Fatima Church for mass, and if they passed them, they wouldn't notice anything special: Just a man and a woman out for a walk, as Julien and Mary Alice have probably done throughout their 37 years of married life.
But if an inquiry was made about the couple's three grown children and newest grandchild, they might notice that something had changed about Julien. He can talk a blue streak if he wants but the words don't come out right, and although he looks and sounds like he's making sense, he doesn't.
Being polite, they wouldn't say anything but Mary Alice thinks it's time for people to talk about Alzheimer's.
She's a bookkeeper, used to dealing with hard facts and figures, and is open about the fact that her husband has the disease. But she also wants people to know that he is a master craftsman who has built many beautiful crucifixes for friends, family heirloom furniture for his children and handsome kitchens for his former employer. The fact that he also happens to have early-onset Alzheimer's disease is just something she has to deal with.
"Why wouldn't you tell someone [that your loved one has Alzheimer's]?" she said. "Don't you think people will notice?"
The stigma attached to Alzheimer's needs to be erased, Mary Alice says, because more and more people are being diagnosed with the degenerative brain disease in their 30s, 40s and 50s as well as when they're older. And the sooner they admit there's a problem, the sooner they can get help.
Back in 2005, when Julien was diagnosed, Mary Alice wasn't prepared for the drastic turn her life would take. He was just 52 years old but was having difficulties communicating and often seemed confused. A friend noticed the change and recommended a doctor's visit. The diagnosis came after Julien took a series of tests, spaced apart by six months, that tested his memory, co-ordination and other functions.
"You're hoping that it's something else," his wife said. "Of course, it's not."
The Alzheimer Society of BC became a lifeline for Mary Alice as she took steps to find help for Julien and educate herself about the disease. "People think it's just about forgetting words and losing your keys but it's way more than that," she says.
As the degenerative disease takes over parts of the brain responsible for memories, decision-making and thought processes, routine tasks become mental challenges. "You stand there with a toothbrush and you don't know what to do with it," she says.
Sometimes, Julien can't recall the name of a loved one, so his daughter made him a photo album with everybody's name and picture, and it helps because even if the name is lost, the relationship is still there.
Increasingly dependent on caregivers while she works, Mary Alice is creative about finding programs and places for Julien to go to stay busy. He cleans the pews at their church regularly and hangs out with the seniors at Centre Bel Age, where he carpet bowls and listens to the francophone musical group Les Jammers. He still likes to joke with people, as he always did, and finds a creative outlet in colouring and painting.
Still, "More and more intervention is needed," Mary Alice said. She has someone in a few times a week to make sure Julien gets through the day safely and there may come a time when he needs more structure and care.
But for now, Mary Alice says she and Julien like to do things they can share without talking - such as listening to music. They enjoy free concerts at Our Lady of Fatima, where they can be just another couple having a good time.
dstrandberg@tricitynews.com
Other information:
www.alzheimerbc.org
Dementia Helpline: 604-681-8651
Making the First Link
Public health officials on the front lines of Alzheimer's care in the Tri-Cities now have a place to refer individuals newly diagnosed with the disease.
B.C.'s Ministry of Health is funding a new program called First Link in which referred families will get a call from a support worker from Alzheimer Society of BC.
Katherine Guilbride, First Link co-ordinator, said she'll make the call to inquire whether help, support and education are needed and then follow up on a regular basis as long as the support is needed.
"We'll offer any sort of information they need to make their caregiving easier," she said.
Information could include what kind of services are available as well as programs and facilities that can offer care as the disease progresses, Guilbride said.
If you need such help, call 604-298-0711.
Support in Tri-City
The Alzheimer Society is also offering the following programs in the Tri-Cities:
FAMILY CAREGIVER series
The family caregiver series comprises four two-hour sessions for family members who are caring for a person with dementia. They will learn about dementia, practical coping strategies and early planning. The series covers the following topics:
understanding dementia;
understanding communication;
understanding behaviour;
planning for the future;
self-care for the caregiver.
Remaining sessions are running March 1, 15 and 29 from 9 to 11 a.m. at Glen Pine Pavilion, 1200 Glen Pine Crt., Coquitlam. Space is limited, call 604-298-0780 or email dleclair@alzheimerbc.org.
LIVING WITH DEMENTIA
This is a positive and supportive education program that will be led by a team of facilitators from the Alzheimer Society. Participants will meet for five weekly sessions to learn about dementia and share their experiences with others.
This program is developed for people experiencing the early symptoms of Alzheimer's disease or a related dementia as well as a care-partner, family member or friend.
Topics will include:
the brain and dementia;
hearing the diagnosis;
maintaining your general health;
life after diagnosis;
planning ahead;
maintaining your spirit.
Program runs Wednesdays, April 13 to May 11, 1:30 to 4 p.m. at Glen Pine Pavilion, in the Lemon Tree Room. To register, contact Katherine Guilbride at 604-298-0711 or kguilbride@alzheimerbc.org.
