When asked to put together a presentation about living with dementia, local resident Ida Ryhorchuk said she did so “with great difficulty.”
Ryhorchuk and Abby Wolfe of the Alzheimer Society were at the North Battleford Library Friday to speak about the different forms of dementia and how it affects people. About 40 people were in attendance.
There are different kinds of dementia and they affect the brain differently. Dementia, Wolfe said, refers to symptoms, but isn’t a disease in itself.
Alzheimer’s disease is a form of dementia, characterized by an accumulation of a protein called tau “that causes plaques and tangles in the brain” and affects the brain’s ability to function, Wolfe said. Alzheimer’s disease leads to neurodegeneration and affects the brain’s physical structure.
“As of yet, we do not have anything that is proven to be able to stop that progression, or reverse that damage,” Wolfe said.
Vascular dementia is another kind of dementia, and it can be common after a stroke, Wolfe said. Vascular dementia occurs when an area of the brain has been deprived of oxygenated blood.
Mixed dementia is possible too, in which someone can have both Alzheimer’s disease and vascular dementia.
Regarding risk factors, there is no one thing that determines someone having dementia, Wolfe said. Age is a risk factor, as are genetics, although a family member with dementia doesn’t necessarily increase another family member’s risk.
Previous medical conditions could be risk factors, Wolfe said, and heart health and brain health are closely linked. Wolfe advised maintaining overall good health, and to live a healthy lifestyle characterized by not smoking, keeping a healthy weight, eating well, exercising and drinking lots of water.
Social activity is important too.
Ida Ryhorchuk began her presentation with a joke.
“I’ve learned two things in my life,” Ryhorchuk said. “I forgot the first one, and the second one is write everything down.”
She said dementia wasn’t a normal part of aging and wasn’t a mental health condition.
“It’s a disability, progressive, and terminal,” Ryhorchuk said.
Ryhorchuk began working with CIBC in 1970.
At one point she had a bad headache, and doctors “blamed it on anything and everything.” In those days, Ryhorchuk said, doctors didn’t regularly take blood pressure.
One time at work, Ryhorchuk’s fingers were swollen and her lips were blue. She was diagnosed with hypertension, also known as high blood pressure, which was unusual since she was so young.
Fifteen years later, Ryhorchuk saw a doctor who said he was 95 per cent sure she had suffered a mild stroke.
Ryhorchuk said she worked 34 years as a comptroller, and did accounting work at a car dealership. Ryhorchuk was also in charge of various software systems. The work could be very demanding and stressful.
All the while, Ryhorchuk said she raised a son, a handicapped girl lived with her for 20 years, and she did her husband’s books, as he owned a business.
Ryhorchuk told stories of, a few times, losing her vision. Once at a grocery store, she looked at the top shelf with her head tilted back, she saw a flash of light “and felt a burning sensation at the top of my head.” But she regained her vision and carried on. Another incident happened while running up a flight of stairs, but she regained her vision quickly afterwards.
Another incident took place in a camper, in which Ryhorchuk was looking up, and she saw a flash of light and experienced severe burning and lost her vision again.
After the incident, Ryhorchuk said, “I didn’t want to wake my husband up.”
“I guess when these things happen you go right into denial and think ‘This is nothing, this’ll pass.’”
Later, a doctor gave her “heck” for not having gone to the hospital sooner.
After a medical investigation, medical staff found she had blocked arteries in both sides of her neck.
Probable causes included genetics, and side effects of long-term blood pressure medication, which most people don’t take until their fifties or sixties.
“I say I’m just a girl ahead of my time,” Ryhorchuk said.
At work, Ryhorchuk found she would misplace files, and sometimes forget how to use the credit/debit card machine, although she was someone who showed people how to use it.
She’d also forget the names of people she worked with.
Ryhorchuk said the incidents became humiliating. She would become frustrated and exhausted, and later depressed.
After some doctor consultations and rigorous testing, Ryhorchuk was eventually diagnosed with vascular dementia. She had never heard of vascular dementia.
At work, some suggested she retire, but Ryhorchuk wasn’t ready to do so.
“I was disabled with a brain disease,” Ryhorchuk said. “If I had cancer, I wouldn’t have said I’m retiring. I’d say I had cancer and I couldn’t work.”
Ryhorchuk said it took two years to accept the diagnosis of vascular dementia.
At the time, Ryhorchuk said she “felt ashamed of having this disease because I couldn’t understand dementia.”
After telling people her diagnosis, Ryhorchuk realized there was a stigma.
“Phones quit ringing, texts quit coming,” Ryhorchuk said, “and so you all of a sudden feel like you’re all alone and on an island and [thinking] who’s going to rescue me.”
Ryhorchuk said the the Alzheimer Society rescued her. The non-profit gave her information, and Ryhorchuk joined a teleconference with other people who had early on-set dementia.
Ryhorchuk saw some “heartbreaking” instances. A woman loved baking, but she could no longer do it because what she was reading on a recipe “wasn’t being processed by her brain properly anymore.”
Ryhorchuk said, now, she sometimes has difficulty writing. At Christmas, she was losing the names of nieces and nephews. The names eventually came back, but “I had to bluff my way through it.”
Ryhorchuk said her sister had cancer. Her sister worked at Battlefords District Care Centre for many years, and worked with people who had dementia.
Cancer had spread to Ryhorchuk’s sister’s brain, and eventually “she was having lots of issues at home” and had trouble with words. She also started misplacing things.
In the hospital, Ryhorchuk’s sister took her hand and said, “Ida, I finally understand what you’re going through.”
“She didn’t really understand it until it happened to her,” Ryhorchuk said. “And that just blew my mind. I thought, ‘How can you not?’ You worked with it. But you don’t know what that person is going through until you experience it.”
Paying attention to signs, and particularly listening to those who live with people who might have some form of dementia is important, Ryhorchuk said, as they’re more likely to notice small differences than family members who only visit occasionally.
Ryhorchuk also advises making government aware of the “dementia crisis.”
Ryhorchuk said she wouldn’t wish the disease on anyone. She advised treating people with dementia “as you would like to be treated.”
These days, Ryhorchuk said, she spends time being active and playing games. Facebook, Ryhorchuk said, saved her after feeling “alone and lost,” and she spends time on humorous and positive websites.
Ryhorchuk said chooses to help people while she still can, and considers helping even one person an accomplishment.
