Family members taking care of loved ones with dementia feel distressed: report
Leah Hanson remembered the stress of taking care of her mother struggling with dementia.
“It was exhausting and stressful, and stressful on my family. I have two teenage boys and they would say ‘Mom this is crazy what’s going on here,’” the Windsor resident said.
“I’d spend a half an hour with my mom and walk away and feel like I ran a marathon,” Hanson said of her mom who died when she was 91.
A new report from the Canadian Institute for Health Information (CIHI) says Hanson’s story is all too common as nearly half of family caregivers of those living with dementia are experiencing distress.
The emotional stress and responsibilities caused not only emotional strife, but physical as well, according the report released June 26.
Hanson said guilt can play a large part of the distress and having to come to terms with the emotional turmoil of her mother’s condition, who was 86 when she was diagnosed.
“And then the stress of watching someone wither away and die. It just breaks your heart,” she said.
“My mother was a stranger to me, she didn’t know who I was, for I want to say the last three years of her life. So essentially it was like looking after a stranger,” Hanson said.
Dementia in Canada reported 45 per cent of unpaid family caregivers experience distress when caring for someone with dementia. Twenty-six per cent report distress when caring for other seniors.
“They can experience caregiver burnout simply because they are tending to their family member with dementia’s crucial health needs while participating in activities of daily living and instrumental activities of daily living for themselves, and potentially their partners and children given their family system,” said Chelsey Chevalier, a clinical social work consultant at Age-Wise Solutions, a senior care provider.
The Public Health Agency of Canada estimates more than 400,000 seniors are living with dementia, two thirds of them are women.
Hanson said aspects of her mother’s personality were amplified, making even the smallest tasks a battle.
“She always had to be a bit of a fighter because my parents were divorced so she always had to work hard and fight for everything she got but it seemed to get a lot worse so the behaviours were exaggerated in many cases,” she said.
“I would try to give her a bath and she would pinch me and spit in my face, it’s just unbelievable because you’re thinking this is the person that gave birth to me and who’s my mother, and now it’s this person that I have absolutely no relationship with whatsoever,” Hanson said.
Although she was her mother’s primary caregiver, the stress she was experiencing took a toll on her family as well.
CIHI says 61 per cent of seniors with dementia in Canada continue to live at home. Family members spend an average of 26 hours per week taking care of family members compared to 17 hours for week for those caring for other seniors without dementia.
The worrying didn’t stop once Hanson’s mother was in long term care either. She said with many long term care facilities lacking enough support staff, she worried constantly about whether her mom was eating, how she was doing and where she was despite being in a facility.
“All of that’s stressful and exhausting and it’s all wrapped into a ball,” Hanson said.
She suggests reaching out to the local Alzheimer’s Society for help and resources, she was able to find support for her mother’s needs and her own.
“I went for support, I did a daughter’s support group. It helped immensely because we were all going through different things and trying to get help from each other,” Hanson said.
Her local chapter helped set her up with this support group and helped to provide a volunteer companion for her mother, along with day away trips and respite for caregivers.
“It’s a horrible, horrible disease. Having your memory robbed and the people in your life that you love the most and they loved you the most don’t even recognize who you are,” Hanson said.