Don de Vlaming hopes people will be understanding and respectful of him when the Alzheimer's disease he was diagnosed with just before Christmas advances.
"Don't take away my dignity," pleads the 76-year-old Winnipeg man.
De Vlaming knows better than most what to expect. He ministered to people with Alzheimer's when he was a chaplain at a care home.
"I can see myself in the future," said de Vlaming.
Through no fault of his own, he acknowledges it will become an increasingly frustrating and challenging time for his caregivers.
"My actions may become contrary. My intention is not to hurt but to love and be loved," he said in an interview after a recent Alzheimer Society seminar in Winnipeg. There, he made an emotional plea to the crowd of loved ones, caregivers and medical professionals to remember and respect the person afflicted by the dementia.
"Regardless of how I am, I can still be loved -- and I need it."
He said he's fortunate to have a loving family -- wife Sylvia and grown sons Jan, 25, and Horace, 20. Not everyone with dementia does, and he's concerned about "herding people away in little nooks" and isolating them.
With an aging population of baby boomers, a growing number of Manitobans like de Vlaming are diagnosed with dementia every year. A boom in dementia cases in Manitoba is expected 25 years from now.
Today, more than 20,000 Manitobans have Alzheimer's disease or another form of dementia, with close to 4,400 new cases of dementia reported in the province last year. By 2038, if nothing changes, there will be 34,000 Manitobans with dementia and the Alzheimer Society of Manitoba is predicting a "crisis."
Manitobans recently caught a glimpse of what happens when families and the system can no longer handle dementia's demands. An inquest into the 2011 death of care-home resident Frank Alexander, 87, began Jan. 20 and raised questions about whether adequate care is available to the most vulnerable among us.
Alexander died after being pushed to the floor by Alzheimer sufferer and care-home resident Joe McLeod, 70. Months earlier, McLeod was moved to Parkview Place from the Winnipeg Remand Centre where he was being held for assaulting his wife. McLeod's family was afraid to take him and he was admitted to the downtown care home.
There, in the main-floor recreation area where a lone staff member was running a bingo game, McLeod pushed Alexander, who fell backwards to the floor and died days later from head trauma.
The families of both men at the inquest said they felt the system failed them.
The union representing Manitoba care-home workers says more staff is needed to care for residents.
"While the number of residents in care is increasing in the province, the staffing numbers are generally staying the same, not to mention staffing shortages," said David Jacks, with the Canadian Union of Public Employees, who added members have reported employers not replacing workers if they call in sick.
"It would be great not to be working short, because you could spend more time with the residents," said health -care aide Sandra Makwich, who's worked at a personal care home for 25 years. "You just do not have the time to say 'Let's go look at your photo album for a minute.' It is a major, major issue and it affects every aspect of care and that includes human touch and human care."
There needs to be "all hands on deck" to ensure the safety of residents and staff, she added. "On a daily basis you're either slapped at, yelled at or sworn at. It's a hard job."
At the inquest into Alexander's death, geriatric psychiatrist Dr. Barry Campbell testified patients in a personal care home have a 10 per cent chance of being assaulted by another resident. For staff, that number is much higher, he said.
"They're expecting to be assaulted."
Makwich, CUPE Local 4572 president, said workers are trained in non-violent crisis intervention and receive "refresher" courses. They also take the PIECES program (Physical, Intellectual, Emotional, Capabilities, Environment and Social), which teaches caregivers how to see the whole person behind the disease so they can understand the root of their difficult behaviour and find creative solutions to managing dementia behaviours.
"When you get to know residents very well, you can sometimes divert the aggression -- it all depends on what frame of mind they're in," said Makwich.
If staff don't have the time to get to know residents, that training won't do much good, she said.
She recalled an incident where a patient wandered up and down the halls saying 'Where's my son? where's my son?'
It wasn't until the woman was in palliative care staff learned she was a concentration camp survivor whose son was lost there.
"Had we known this, it would've explained a lot more. We care for our residents deeply and try to do the best job we can," she said.
"Put yourself in their position. How would you want to be treated or your parents treated? I wouldn't want my mom in a home where they're short-staffed and she just sits all day," added Makwich, whose lucid 89-year-old mother is visiting her from B.C.
The Alzheimer Society said it is working with the province to renew its 2002 Strategy for Alzheimer Disease and Related Dementias in Manitoba.
"You can have wonderful strategy, but if it's not funded, it's no good to anyone," said Wendy Schettler, executive director of the Alzheimer Society of Manitoba. The province says it knows more personal care home beds are needed and is working on it, particularly making more room for those who need special care.
Last August, a new care home in Niverville opened that includes a special-care unit for residents with more aggressive behaviours often caused by dementia. New personal care homes in Morden and Lac du Bonnet are in development, a government spokeswoman said in an email.
In 2015, construction is set to begin on 200 new personal care home beds in Winnipeg with specialized spaces for residents with complex behavioural issues. The province is also looking at whether existing personal care home beds could be "enhanced" for residents with "complex needs," the spokeswoman said.
For now, Winnipeg has nearly 400 beds for residents whose care needs require a protected environment, with around 10 per cent for those with complex behavioural needs, the province said.
Schettler said one of the biggest needs is for training of caregivers and staff. Her organization is working with the province to provide PIECES training to better respond to Alzheimer's patients.
When asked what to do with those who are aggressive, Schettler bristles.
"Imagine yourself sitting in your home quietly watching TV and somebody walked into your home and started taking off your clothes and said 'You're taking a bath?' " Schettler asked. Yelling or trying to fight off the molester would be considered a reasonable response if you don't recognize your caregiver. The aggressive behaviour is usually a response to feeling threatened, she said.
Schettler hopes the inquest into the death of Alexander spurs the health-care system to do what needs to be done.
"We think this is a tragedy for the families, but we're hoping the inquest will identify some of the gaps in the system... and how some of the decision points along the way could've been different. We're really hopeful the inquest will come out with some more insight and make recommendations."