When Mom doesn’t know us anymore: Alzheimer’s other victim
COFFEE WITH WARREN, with Warren Harbeck
Of course, it’s not just about Mom not recognizing her kids and husband anymore.
In the case of Sylvia Wylie, of Cochrane, it was her late husband Peter who struggled for 16 years with Alzheimer’s, the last 11 of which he spent in our local Bethany Care Centre. (My column for April 4, 2012, told of how she danced at her beloved’s funeral.)
Alzheimer’s disease is the most common form of dementia in Canada. It progressively destroys brain cells, leading to loss of memory, confusion, and death – “death in slow motion,” as Sylvia puts it.
The family member afflicted with Alzheimer’s isn’t the only one needing help, however. So are their loved ones who are often bewildered, angry and trying to cope alone. This column is about caring for the caregivers, the “other victims.”
Peter was 62 when Sylvia and the children began to see changes in him, she says, “small things at first, like asking the same question over and over. He started having problems at work, not getting along with co-workers. He was in denial from day one.”
And like most folks confronted with such abnormal behaviour, she says, “I knew NOTHING about Alzheimer's.” She soon realized that it wasn’t just Peter who needed help. She needed help, too, and embraced a support group.
Informed by Sylvia’s experience, I’ve entered into conversation with others of our readers impacted by a family member’s Alzheimer’s. They all stress the importance of support groups for the caregiver. In fact, two of our readers met with me over coffee recently to share what they’ve learned along the way.
Calgarian Jim Monk, the “Allan Monk” of Metropolitan Opera fame, introduced me to Bearspaw resident Nipper Guest, founder of the Bearspaw Benevolent Foundation. Both are support-group boosters.
Jim’s wife is currently in long-term care in Calgary, while Nipper’s, after being looked after at Cochrane’s Bethany Care Centre, passed away two years ago. They have benefited greatly from their participation in support groups where experiences, fears and insights are candidly discussed.
Especially important has been the support they’ve received in dealing with the guilt they initially felt over putting their wives into long-term care.
Here are four of their suggestions that may be helpful to others who suspect Alzheimer’s in a family member, or have already had it confirmed:
Don’t deny. It’s important to face the facts. When a family member’s behaviour seems increasingly abnormal, consult a medical professional.
Don’t delay. Once you have confirmation of Alzheimer’s, don’t put off making those hard decisions concerning the family member.
Don’t go it alone. Get into a support group. Be good to yourself.
Don’t try to hide it. “Your friends will have already figured it out anyway, but can’t talk about it or offer help until you raise the subject,” Nipper says.
Unlike grief over the sudden death of a family member, Alzheimer’s is indeed a long goodbye. It is important that caregivers be prepared for significant lifestyle changes in their own routine, Jim and Nipper say. This includes dealing with attitudes, such as anger and guilt.
It also includes learning new ways of connecting with the family member within their long-term care environment, and assisting them in socializing within their new neighbourhood.
For example, about carrying on conversations with the family member within their new environment, support groups can offer insight into how to guide conversations away from non-productive topics that too easily wind up in arguments. The caregiver just might learn a new meaning for LSD: Laughing, Singing, Dancing.
When I shared this conversation with Sylvia, she agreed wholeheartedly with Jim and Nipper’s advice, adding just one more suggestion: Well before a diagnosis is made, arrange for power of attorney.
For more information, see alzheimercalgary.ca.
© 2014 Warren Harbeck