Some days, buying groceries can turn into a humiliating ordeal for Constanta Jarvis.
On occasion, the 75-year-old Nanaimo woman has had to hold out her hand like a child and allow the cashier to pick out the coins needed because halfway through counting, Jarvis forgot how much the cashier said she owed.
Meanwhile, the lineup is getting longer and other customers are getting more and more frustrated as she struggles to pay.
“And you’re feeling stupider and smaller by the second,” said Jarvis.
Jarvis has dementia – a progressive degenerative disease of the brain characterized by loss of memory, judgment and reasoning, and changes in mood and behaviour.
She was diagnosed with vascular dementia – caused by strokes – in 2004, after struggling in the years leading up to the diagnosis to do all the things she previously enjoyed such as interior decorating and design, drafting and gardening.
“I just seemed to be having troubles in all aspects of my life,” said Jarvis. “Nothing was consistent. Some days you would be performing quite normally.”
She describes her experience with the disease as like swimming along and then all of a sudden, realizing that you can’t swim anymore, that you’re in dangerous territory and you don’t know how to get out of the situation without looking foolish.
Jarvis can remember all of the places she’s lived, but some of the names are gone.
Paperwork is her greatest challenge – she has problems understanding business letters, understanding and filling out forms, and keeping track of it all, so she keeps as organized as possible.
She sometimes has to set aside a novel because she’ll be halfway through reading a sentence and realize she didn’t remember the sentence before.
“Sometimes I have to just leave things for weeks,” said Jarvis. “The secret is not to give up on yourself, not to let the fear take over.”
Around family and strangers, she tries to avoid the topic of her disease because she can tell that others are uncomfortable about it.
Strangers initially think Jarvis is an interesting person – she’s worn many hats in her life, including hairdresser, professional gardener, draftswoman, practical nurse, a stint in the radar department for the air force and mother of four children – but then they get into a subject that she has difficulty with remembering and she can’t maintain the conversation.
“It’s awkward, if you’re sensitive to that sort of thing,” said Jarvis. “You’ve lost a huge part of yourself. You can’t even discuss the things that were meaningful to you.”
As soon as people see she is struggling, they remove themselves as politely and as quickly as possible.
Jarvis invites people to join her on her journey, to laugh at her when she is laughing at herself, or just be present with her in a serious moment rather than just trying to get away.
“It’s a lonely journey and it can be a frightening journey,” she said.
Jarvis’s story is not uncommon, said Jane Hope, support and education coordinator for north and central Island with the Alzheimer Society of B.C.
About 70,000 British Columbians have dementia, the most common of which is Alzheimer’s disease, she said.
Hope said because the biggest risk factor is age, that number is expected to increase as the population ages, which is why this month – Alzheimer Awareness Month – the society launched an awareness campaign called, “See me, not my disease. Let’s talk about dementia.”
The goal of the campaign is to address myths about the disease, shift attitudes and make it easier for people to talk about dementia.
Hope said one of the common myths is that someone’s life is over once diagnosed with dementia – the truth is, many people lead meaningful, active lives for many years after diagnosis.
Other myths include that everyone with dementia becomes violent, that all people with dementia cannot understand what is going on around them and that it only affects older people.
Hope said the more awareness the better because it could lead to earlier diagnosis – while there is no cure, there are medications that can temporarily help preserve the ability of damaged nerve endings in the brain to transmit messages from one nerve cell to another – it doesn’t work for everyone – and treatment is more effective the earlier it is started.
Dr. Lynn Beattie, medical director for the Clinic for Alzheimer’s Disease and Related Disorders at the University of B.C. Hospital, said lots of people don’t get a diagnosis until late, sometimes because they continue to tell their doctor that everything is all right.
She said researchers know mental and physical exercise maintains plasticity in the brain and having a high level of education can delay the onset of the disease, but they don’t know how to intervene in the case of someone deemed vulnerable to getting dementia.
Hope said the key for both dementia patients in the early stages and caregivers is to get educated.
The society’s Bowen Road resource centre offers a variety of services, including education programs, support groups for caregivers and those with dementia, and individual support.
Jarvis said participation in one of the society’s support groups is important for her.
“You don’t have to explain what is going on,” she said. “You don’t have to be apologetic or feel embarrassed or ashamed.”
For more information, please visit www.alzheimerbc.org or call Hope at 250-734-4170.