Who knows what life has in store for us as we round each bend? Joy or sorrow? Triumph or tragedy? Good health or illness?
In 1994, Diana Frances and Randy Bysouth barely survived a horrific motorcycle accident in the Okanagan, a physically and emotionally crushing blow from which they took years to recover.
But recover they could, and did.
There is no such remedy for Randy’s mother, or for the more than 70,000 other British Columbians known to have various forms of dementia. Although great progress continues to be made towards halting this terrible affliction, there is, as yet, no cure.
Helen Bysouth has Lewy Body dementia, a disease that impacts only between five and 15 per cent of dementia sufferers, according to the Alzheimer Society of Canada. Now 89 (she is set to turn 90 in June), she was diagnosed in 2008 but recognized some symptoms of cognitive decline in herself as early as 2005.
Her husband of 66 years, Eric Bysouth — a man widely recognized as one of Langley’s most outstanding citizens — died in October 2012. Helen now lives at Zion Park Manor in Cloverdale, not far from the home of Randy and Diana, who say she receives excellent care there.
Another son, Kerry, and his wife Marilyn live in Chilliwack, and a daughter, Brenda Bysouth, and her husband John Fryer live in Victoria. The Bysouth clan is large and very connected, but the mantle of caregiving — practical and emotional — falls mostly upon elder son Randy and his wife.
Diana, whose c.v. includes florist, actress and coach, was at first floored when her mom-in-law was diagnosed. “I’d only read Jane Eyre” (which deals in a very 19th-century way with dementia), she says. “I had to learn so much.”
Alzheimer’s disease is still the most common form of dementia, and one to which people seem to find it easier to respond. But not all people with dementia exhibit the same symptoms.
“People would keep coming up to Mom, asking her if she remembered them,” says Randy, his voice carrying a mixture of amusement and annoyance.
In Lewy Body dementia, although abnormal deposits of a protein called alpha-synuclein inside the brain's nerve cells interrupt cranial messages, life is not a race downhill. Randy and Diana credit a noticeable recent improvement in Helen’s condition to the de-stressing that followed her husband’s severe illness and death.
“She was an extremely capable woman. She used to have 30 people for Christmas dinner,” Randy says.
“Whatever else is happening in a person’s life, the real person — the soul — is still there,” Diana adds.
Randy, a former 25-year IBM computer specialist, and Diana are honorees of the 2014 Langley-Aldergrove-Abbotsford Walk for Memories in aid of the Alzheimer Society of B.C. (ASBC), set for January 26 at the Aldergrove Athletic Park. Both are active participants in ASBC support and discussion groups and they have bravely stepped up to be the “poster faces” of the many hundreds of area caregivers whose lives have been impacted by dementia.
For many people, news that a loved one has dementia can be as terrifying as (or even more terrifying than) that confirmation is to the person diagnosed. Denial is among the many negative reactions.
“A lot of people, caregivers, miss out on the upside, because they’re scared,” Randy explains. “And there is a lot of upside.
“Postponing the inevitable makes it harder to accept. You will miss the involvement. Joyful moments work both ways. A smile is worth a million bucks.”
“It’s a pleasure to see improvement, if you know what will help,” Diana adds.
When it comes to help, Randy and Diana rely heavily upon ASBC resources, especially those provided by ASBC Langley-Surrey support and education co-ordinator Rose Puszka. Educational services are free and sharing information among caregivers is one source of tremendous support.
“It’s so beneficial to learn from others what is happening in people’s lives, what solutions there are,” Randy says.
“We are very privileged to have these resources and it’s a shame not more people do [access them],” he adds.
Both honorees highly recommend a book by Jolene Brackey, called Creating Moments of Joy, along with a healthy dose of optimism.
“If there can be remission with dementia, with help, care and love, we can stall this,” Diana says.
If you would like to support our local “group hug” to raise funds for the ASBC and awareness of dementia, please go to walkformemories.com and click on the Langley, Aldergrove and Abbotsford link. Registration is free and you can sign up as an individual or as a team/family and set your own fundraising goals. The Jan. 26 event (it starts at noon, rain or shine) will feature live entertainment for all the family, a BBQ and an official ribbon-cutting by Township of Langley Mayor Jack Froese.
If you would like more information about dementia and the help available, please contact Rose Puszka at the Langley Resource Centre, 604-533-5277.
Eric and Helen Bysouth with their first great-grandchildren in the fall of 2008.