by Julia Dima
Dementia can be devastating for the person experiencing it, but it’s also just as difficult for family.
Melissa Blacksioux watched dementia take over her grandmother’s life. It took over her life too. Blacksioux was in her last year of university in Indian Social Work at the University of Saskatchewan when the diagnosis came, and she said she was considering dropping out of school to be closer to her grandmother.
“I was in denial for a long time, because she was like my mom. I grew up with her, she taught me everything I know. The whole family lived in denial. I remember our auntie giving us pamphlets to read about Alzheimer’s, but it wasn’t until two months before she passed that I started researching Alzheimer’s. When I started learning about it, I was in shock and it felt like I already lost her,” Blacksioux says.
For Blacksioux’s grandmother the dementia was present long before the diagnosis, but not having the resources to know the signs of the disease, the family did not know it was dementia.
“We saw little signs, when I think about it now,” Blacksioux explains. “At first, she would start losing her wallet or keys, this was about seven years ago. But when we found out she had Alzheimer’s it was only a year or two before she passed away. When we found out how bad it was, it sent our family into shock.”
Blacksioux says the family tried to balance taking care of her grandma as she experienced mood changes, memory loss, aggression, and wandering before being committed to care homes. Blacksioux says, her grandmother was moved frequently because her advanced condition couldn’t be cared for in some of the care facilities she stayed at. She says because the diagnosis came so late, the family didn’t get the support they felt they needed.
“I wish we had more support from the care homes in understanding what was happening to her. Maybe they thought we understood, but we’d ask them how she was doing, and they’d say she’s fine, but we’d go to see her and she wasn’t fine in our minds,” Blacksioux says. “I don’t think there’s enough education out there. It took me going onto the internet and watching youtube videos of families going through the same thing to realize what was happening.”
It’s not uncommon for families to feel inadequately prepared for the diagnosis, according to Joanne Michael, with the Alzheimer’s Society of Saskatchewan.
“Lots of people tend to not know what is available out in the wider community whether it be from the regional health system, from informal supports, from the private sector, and so on, that might be able to support them in their care giving role,” Michael says. Some of the services can include family therapy sessions, home care, adult day care programs, and paratransit services. Michael adds that even when the resources are there, without education, it’s a challenge.
“Navigating that support system can be challenging, in terms of knowing what questions you should be asking, or what information you should be sharing in order to get the right service for your needs,” Michael says, “I see our role as the Alzheimer’s Society is to help our clients be educated consumers, so it’s important to know the services that are there for them.”
Blacksioux says she wishes her family had more knowledge about dementia, but some experiences she could never prepare for.
“The toughest part was when she didn’t recognize who I was anymore. It was heartbreaking, like something got torn out of my heart. She was just looking at me, confused, and I asked ‘what’s wrong, mom?’ and she was calling me mom, she didn’t know who I was, who anyone was,” Blacksioux says. “When my Mushum would say ‘I’m you’re husband’ she’d say he’s not and she was scared of him. We watched her go through her residential school phase again and we watched her remembering the emotional turmoil of the abusive stage in her life. That was hard.”
Blacksioux says the experience with her grandmother taught her how important it is to have family support when a loved one has dementia.
“I honestly hit a very depressed stage after my grandma’s dementia. I didn’t know how to move on, but I know I do need help. I felt like I didn’t have a lot of support, because I have to be the support to my family, to my kids. Losing her completely tore my family apart.”
Now Blacksioux’s grandfather is developing dementia and she says she’s more educated about what is happening and wants to dedicate time to helping other families cope with Alzheimer’s and have the support system she needed.
“What I want to do now is become involved in the Alzheimer’s Association. I want to do the Walk for Memories, and raise awareness,” she says. “I want to volunteer too, I told my kids when we have time, we’ll go volunteer in dementia units, and help families going through what we went through, because it’s hard on the caregivers too. I want to be there as a support for families.”
