Learning to live with Alzheimer’s
At first, Roxanne Varey thought she suffered a mild stroke.
But on Nov. 27, 2013, a doctor gave her a different and life-changing diagnosis — she had Alzheimer’s disease. Further, Roxanne and her husband Michael were told there is no cure.
“We were too shocked. We were just dumbstruck,” Roxanne said Saturday in the couple’s east-end Regina home.
“I had it echoing in my ears. No cure. Terminal. No cure,” she said.
Alzheimer’s is a degenerative and progressive brain disease that destroys cells and changes brain function. It is the most common form of dementia. January is Alzheimer’s Awareness Month.
According to Joanne Bracken, CEO of the Alzheimer Society of Saskatchewan, of the 747,000 Canadians living with Alzheimer’s or a related form of dementia (in Saskatchewan, about 18,000 people), 72 per cent are women. The reason there is a higher percentage of women compared to men is that women have a longer life expectancy, she explained. As well, the majority of cases involve people over the age of 65.
Bracken added that it is important for people to become educated about the early warning signs and get tested as soon as possible.
Roxanne is an ambassador for the society’s Walk for Memories event on Jan. 25 at the University of Regina.
She decided to see a physician after experiencing difficulty speaking and retaining information. She also noticed issues with motor skills, shaking and loss of strength on the left side of her body.
Roxanne was 51 when she was diagnosed with Alzheimer’s. Years earlier, she met Michael at a backyard barbecue in Winnipeg. After some courting, they fell in love while dancing at Roxanne’s son’s wedding. They have been married for eight-anda-half years.
The couple still dances almost every night. Roxanne knows that eventually she will lose her mobility and become incapacitated. Until then, dancing is a way to have a familiar routine as she copes with the disease.
Even so, as Alzheimer’s progresses, so too will the amount of daily care she requires. Not looking too far ahead, the couple sees the future in six-month intervals to assess how things have changed.
Roxanne has an aggressive form of Alzheimer’s with a life-expectancy estimated at seven or eight years.
But Roxanne, a woman of strong religious faith, said she isn’t afraid of dying.
In fact, she already has her affairs in order for her final day. Her cemetery plot has been picked out and her funeral planned. Also, Roxanne’s end-of-life wishes are documented.
Short-term memory loss and unpredictable sleeping habits forced Roxanne to quit her job. This left Michael as the only income earner in the home to deal with financial issues, such as a mortgage.
Despite the family stress, Roxanne said that Alzheimer’s has brought the couple and their children closer together. Roxanne and Michael have realized the importance of living life with more meaning and purpose.
But she also recalled that after receiving the diagnosis in 2013, Michael, a widower, told Roxanne on the drive home that he didn’t know if he could bury another wife.
Roxanne reacted by doing something she has never done before. She wrote a poem.
Fourteen months later, Roxanne has accumulated a binder full of poems.
On Saturday, she grabbed that first poem, called “From a Spouse to a Caregiver,” and read it aloud. Even though the disease has affected her speech and ability to process thoughts, the powerful verses are read flawlessly.
The poem talks about their marriage vows and then asks if Michael would have taken them again if he knew he would be caring for her to the extent the disease will require.
Roxanne then reads the answer.
“The caregiver loves me more than the spouse.”