Change and adapt. If Anne Marie Pieterse had to summarize the last seven years of her life, those two words would do it. But, although sometimes challenging, it is a change that she has embraced with much grace and enthusiasm.
The first changes started in the early 2000s when Anne Marie's husband, Gary, began having difficulty finishing routine tasks at work. He was unable to complete necessary paperwork, couldn't do the math to add up his hours, and would mix up his schedule; showing up on the wrong day for appointments or missing them altogether.
Only 50 at the time, doctors dismissed the Pieterses' concerns, convinced he was too young to be suffering from memory loss. Through a second opinion and some persistence, the Pieterses found their way to Dr. David Tang-Wai at the Krembil Neuroscience Centre (KNC)'s Memory Clinic. Within two days, Gary was diagnosed with early onset Alzheimer's disease at the age of 51.
Ironically, Gary had been working as a nurse specializing in caring for Alzheimer's patients.
"If there is one thing I've learned, it's that you really need to go with the flow," Anne Marie says. "As the illness evolves, I've figured out ways to adapt and maintain as normal a life as possible for both of us."
An additional prescription for a drug that was being tested in clinical trials at the time helped stabilize Gary's worsening symptoms. But the diagnosis confirmed that life was going to change for the Pieterses.
And for Anne Marie, it was time to adapt to caring for her husband, joining the thousands of Canadians who act as caregivers for a person with Alzheimer's disease – 70 per cent of whom are women, according to a report released earlier this year by the Alzheimer Society of Canada.
During the first few years after Gary's diagnosis, Anne Marie was able to continue her work as an insurance representative for Sun Life Financial, and the Pieterses made a point of taking many trips.
But as the years went on, it became more difficult to leave Gary on his own, so Anne Marie gradually cut back her work hours and eventually retired in 2013. The couple also took their last trip that same year, three weeks in Scotland, as Gary was getting increasingly uncomfortable in unfamiliar surroundings.
According to Maria Martinez, a social worker who supports patients and their families at KNC's Memory Clinic, that's the best mindset to have when becoming a caregiver to a person with dementia.
"There are definitely some challenges to being a caregiver for a person with dementia and having to cope with this illness," she says. "But approaching the role with an open mind and learning about the illness as well as what adjustments to make to accommodate it will benefit everyone involved – there are certainly things we encourage caregivers to do that will make it easier in the long run."
After seven years in the role, Anne Marie's experience has led her to adopt a few rules to live by as she navigates a different life caring for a partner with Alzheimer's. Maintaining a social life and seeing friends has been an important benefit for both Gary and Anne Marie.
"We keep our get-togethers small and meet up with one or two other couples for stress-free activities like having coffee or a meal," she says. "Gary really enjoys it, he still recognizes people and is very happy to see his friends and it's helped me to stay connected. You really want to avoid isolating yourself."
Anne Marie is Gary's primary caregiver but, once a week, she has someone look after him for three hours in the afternoon so she can have a little time for herself and get a few errands done. She also makes use of resources available through her local Alzheimer Society in Welland, like getting a free haircut and massage once a month.
"I love Gary and I love taking care of him, but having a bit of extra help and a little time to myself definitely helps," she says.
And it is learning to ask for and accept outside help that will really benefit in the long run. Research has shown that turning down the support of family, friends or professional assistance can cause caregivers to develop their own serious and chronic health problems, and even lead to crisis events that leave no other choice but to have their loved one admitted to a home or other facility.
"Caregivers need to know that they're not alone in this process," says Martinez. "Many caregivers struggle with feelings of guilt about asking for help, they feel that if they make that request they are somehow failing in their role. But we encourage caregivers to enlist as much support as they feel they need; once they make that initial step, there is a trickle-down effect that makes everything easier."
The standard of care at the Memory Clinic includes involving a patient's caregiver and family in the treatment process of dealing with a chronic illness like dementia.
"The person with dementia is not the only one coping with the diagnosis," Martinez explains. "The whole family is going through this process so it's very important to have everyone involved from the beginning and give them as much support as we can."
Other small things have also helped Anne Marie adapt. Music and watching golf both engage and entertain Gary and he has kept up his hobby as a birdwatcher. His Alzheimer's symptoms continue to evolve and he now sometimes suffers from involuntary jerks. On those days, Anne Marie makes sure to use a sippy cup for his drinks and will serve him oatmeal instead of cereal since it's easier to clean up if the sudden movements cause him to spill his breakfast.
Most of all, having a sense of humour and being able to laugh with Gary about some of the frustrations of living with dementia is what makes the harder times easier.
But if there's one thing that hasn't changed, it's Anne Marie's total commitment to Gary.
"There's no doubt that I've definitely had my moments from time to time," she says. "But I would tell any caregiver who is just starting out in their long journey as long as there is acceptance and laughter, life is so much easier – not forgetting love, of course. Gary is still the wonderful man I married 30 years ago, and the best father and grandfather.
"We are so lucky to have each other, so we are blessed."