Watching someone’s personality change and not being remembered by those living with dementia and Alzheimer’s is one of the most difficult things to deal with, say three different locals who have stepped into a caregiving role for their loved ones.
Marilyn Bulger’s mother was diagnosed with Alzheimer’s in 2014, which later changed to a diagnosis of mixed dementia. When it became unsafe for her mother to remain living on her own in Ontario, she moved into a care facility for six months before relocating to Alberta to live with Marilyn and her husband, who are now the full time caregivers for the 93 year old.
“The biggest thing is watching my mother change from a highly intelligent independent woman to a childlike condition and it’s hard to be needed all the time. My husband and I are giving up our life and our needs for another person, as much as we love her, that’s difficult,” Bulger said.
They’ve had to learn to manage their time and their own well-being in order to provide the care.
Every year, 25,000 people are diagnosed with dementia in Canada, 65 per cent of which are women.
Alzheimer’s Disease is one of the many forms of dementia, which is the result of a brain related illness or condition causing memory loss and loss of judgement.
Bulger’s mother has lost her short term memory and her ability to make decisions.
“Fortunately for us, my mom has maintained her sweet personality and she’s quite content most of the time,” Bulger stated.
Bulger writes notes for her mother on a whiteboard beside her bed every morning, to remind her what day it is and what they plan to do that day.
She believes taking care of her at home has given her mother the best possible quality of life and although she wishes she could do it forever, she knows eventually she’ll need more.
Her mother was placed on the waitlist for the Hinton long term care facility as her dementia progresses beyond the point of being able to live at home safely.
Maureen Wood-Engerdahl also recently took her 83-year-old mom into her care, and she added that she can’t ignore the strain it has put on her family life.
Bulger and Wood-Engerdahl both relied on the adult day program in Hinton every week to give them some respite, as well as Alberta Health Care homecare support.
It’s important for caregivers to receive the care they need, and both women mentioned a program to train people as eldersitters to relieve full-time caregivers would be a great first step.
Bulger added that respite rooms in one of Hinton’s facilities would also be helpful, as well as financial support.
“We need the government to compensate for the inability of caregivers to earn an income, because you can’t do both. And they need us to do this, we’re saving the government tons of money by being caregivers in the home,” she said.
Wood-Engerdahl, who had to quit her job to be home with her mom full time, echoed this sentiment and said it has been an adjustment in terms of household finances.
Family and friends and the FCSS dementia caregiver support group have also been huge support systems to help Bulger and Wood-Engerdahl cope and learn how to provide the best care.
Jodi Archibald also regularly attends the support group in Hinton whenever she’s home.
Her mother was diagnosed with Alzheimer’s two years ago when she lived in Victoria, B.C.
The support group was something Archibald didn’t realize she needed until she went.
“There’s no other place to get that kind of information about coping strategies and support that we get from each other,” she said.
Due to her mothers’ rapid descent, she moved into a facility on Vancouver Island near Archibald’s sister’s home. Her siblings take turns being with her, as the facility runs on limited staff and resources.
“There are still lots of complications with how we care for patients with Alzheimers and dementia,” explained Archibald. “We need to be their advocate and companion.”
Archibald also stated that the aging boomers generation will put more pressure on the system, and that staff is doing the best they can to care for their patients.
Her mother is now wheelchair bound and Archibald believes that with more time spent on physiotherapy each week, she would’ve been able to hold onto her strength longer.
Learning to deal with their mothers’ diagnosis has been overwhelming and emotional.
“This last year, part of her disease has been psychosis, lots of anger and aggression. Not knowing who we were or where she was. It has evened out a little bit in care,” explained Archibald.
Currently, her mother is in a private care facility as wait times for long-term care homes were too long and would have put her family under a lot of stress.
“It will be a year before mom gets some kind of subsidy. For families that can’t afford this, it’s inhumane. She would have been a danger to herself and others,” said Archibald.
Wood-Engerdahl’s mom was diagnosed 10 years ago and lived at home with her husband in Hinton until five years ago when they both entered an assisted living arrangement in Kelowna, due to a lack of space in the Hinton area.
Her mother has since returned to Hinton to live with them, while her father remains in Kelowna.
“They had a good four and a half years together in the same apartment living together. That was important for them, today is actually their 50th wedding anniversary,” said Wood-Engerdahl on Jan. 10. “I would like to see more facilities for people to stay in the community longer and with more ability to stay together as a couple or as a family unit.”
The hardest thing for her has been her mother not recognizing her as her daughter.
“My mom and I had a really close relationship when I was growing up and throughout my adult life. That’s probably the hardest thing, to love someone who doesn’t remember that they love you back,” she said.
The toughest part for Archibald is slowly losing her mother by degrees as the disease progresses.People living with dementia and Alzheimer’s can, in some cases, continue to function in society.
“The longer we can keep people at home in their communities the better off it is, not just for the expense to the system, but for the person themselves,” said Archibald.
January is Alzheimer’s Awareness Month, the purpose of the month is to help bring awareness to the disease.
For more info, go to alzheimer.ca/en/ab.
Contact Charlene Sitar at (780) 223-8009 about the local Dementia Caregiver Support Group.