Grieving can begin long before bodies are laid in the grave.
That’s especially true when caring for someone who has Alzheimer’s disease or dementia.
“Because dementia is a degenerative brain disease, it’s irreversible. When you are caregiving for that person, you will be going through all the losses of that person as you knew them, all the losses of their abilities, physically and mentally. So, right from the beginning, you will be spending a lot of time in grief,” explains Cathy Angel.
That’s one thing she didn’t expect to learn when her mother was diagnosed with the disease a number of years ago. Angel and the rest of the family worked together to give her the best care possible, and to support her father who was still living at home.
It was an all-consuming job, said Angel. People who have dementia often lose their sense of time. Her mother would think it was time to get up while her children were getting ready to sleep. She would forget to eat. And there were constant concerns about her safety: what if she left a pot boiling on the stove? What if she wandered outside and got lost without realizing it? Each day brought a new set of challenges; what worked one day may not work the next.
Thankfully, the family was able to support each other. Angel’s siblings who lived in British Columbia would sometimes travel up; other family members drove in from Mayo. They have deep roots in the Yukon; Angel’s great-great-great-uncle was Robert Henderson, one of the first men to discover gold in the Klondike.
Eventually, though, it became too difficult for them to give her the care she needed at home. Her mother moved to Copper Ridge Place in 2006. She would live there until she died in 2011.
Caregiving bonded her already-close family closer together, said Angel. But that doesn’t always happen for everyone, she said. The stress of caring for a dementia patient can pull people apart. That’s especially troublesome because caregivers can easily begin to feel isolated themselves.
That’s the other thing main thing Angel learned once her mother moved into the long-term care facility. The staff was dedicated; the facilities excellent - her mother had her own room in a locked-in area of the building that allowed her to wander around freely. She was an active person, her daughter recalls, who loved gathering people together for parties. Even in Copper Ridge Place, she would try to get everyone around her dancing, said Angel.
But support for caregivers? That was non-existent.
Not long after her mother moved to Copper Ridge Place, Angel met another woman who was also caring for a parent with dementia. The two “put their heads together,” and in 2009, they started the Alzheimer/Dementia Family Caregiver Support Group.
There was a bit of a hiccup when an individual with dementia came to the first meeting. But it’s been going strong ever since.
The group brings together people who are caring for someone with Alzheimer’s disease or dementia to share stories and give advice. When the original co-founder moved away in 2011, Angel enlisted long-time friend Joanne Lewis to help her run the group.
It’s a grassroots group, said Angel, although it does receive some support from the Alzheimer Society of B.C.
Participants have ranged from teenagers to seniors in their 80s. And while each hour-and-a-half long meeting does include some form of education, it’s not run by professionals, she said. The facilitators aren’t experts, although they’re willing to bring experts in to speak about different topics.
In September, the group plans to bring in someone to talk about the importance of planning early when it comes to securing power-of-attorney and guardianship so the family can make decisions when the person they’re caring for no longer can. All information is kept confidential, unless the facilitators feel someone a participant is caring for may be at risk, said Angel. But in her years with the group, she hasn’t had a problem with the care people receive in Whitehorse, she said.
The facilitators are experts in one thing: how caring for someone with dementia or Alzheimer’s disease feels.
“People who are caring for someone with dementia have an incredibly stressful job to do with very little tools. Unless they are educated about the disease, they really don’t know what is going to happen next and how they are supposed to deal with it,” explains Angel.
When her mother was showing symptoms of the disease, it was difficult to even find a doctor who would give a diagnosis. The family only got one because they were persistent, she said. But once the diagnosis was official, they were left with feelings of denial, and not a whole lot of information. They asked the staff at Copper Ridge Place questions and found resources online. But that couldn’t address the non-medical aspects of a dementia diagnosis.
“Along with (the diagnosis) comes all kinds of emotional feelings of anxiety and stress and depression and guilt and basically the inability to manage this disease, which is unmanageable, basically, if you’re not a professional,” said Angel.
But while it may be hard to manage, people need to know they don’t have to do it alone.
“We like to provide a sense of hope in the face of a disease that appears to be hopeless,” said Angel.
The support group meets the second Wednesday of every month at Copper Ridge Place at 7 p.m. People who are interested in coming are asked to call Cathy Angel at 633-7337 or Joanne Lewis at 668-7713. Angel has also launched a website, www.alzheimeryukon.org, to give more information.
Contact Meagan Gillmore at
mgillmore@yukon-news.com