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‘You’ve lost them, but they’re still here’: Lisa Raitt on the toll of caring for a loved one with Alzheimer’s disease

BARRIE — Lisa Raitt says caring for her husband Bruce, who was diagnosed with early-onset Alzheimer’s disease in 2016, is a “battle.”

The former deputy leader of the Conservative Party of Canada said Bruce has been living in the hospital since January, leaving her feeling as though she’s living with his ghost in their home.

“It’s really difficult, it’s ambiguous grief,” she said. “You’ve lost them, but they’re still here.”

Raitt has been sharing her family’s story publicly, documenting what it’s like to care for someone battling the disease.

She told CTV’s Your Morning on Friday that when her husband was first diagnosed, she had “no idea” what the middle or late stages of the disease looked like.

“And to be honest, watching it as a movie is not going to give you any insight as to what really happens,” she said.

Planning ahead, reading about the disease and connecting with support groups are key pieces of advice Raitt offered to others caring for loved ones battling Alzheimer’s.

Approximately 8.1 million Canadians, or one in four, are caregivers to those who need physical or mental health care.

Raitt said while not everyone who has the disease will exhibit violent or problematic behaviour traits, those are the symptoms her husband experiences.

“And what it would look like is just lots of anger, lots of aggression, uncontrolled fury, threatening people, threatening me, physical violence.”

Raitt’s husband has punched her, and has threatened to kill her son, Billy.

On New Year’s Day, Raitt said Bruce tried to push her through a window. That’s what prompted a call to 911.

“And after that he stayed within the medical system,” she said.

Raitt said caring for her husband has been taxing both physically and mentally, and has taken a toll on her entire family.

“Physically, you get no sleep, you’re constantly on guard, there’s a constant sense of fear, that amount of stress does manifest physically,” she said. “I am going to need a hip replacement and knee replacement far earlier than I should at my age, a lot of it has to do with the fact that you carry a lot of stress as a caregiver.”

She said after your loved one is placed within the system that the mental impacts “really do come home.”

“It’s silent because you don’t see the physicality anymore, but I’ve gotta tell you, it’s just as painful, and it’s there every single day for those of us who are battling this disease.”

Raitt said she hasn’t been able to move her husband’s clothes from the dressers in their home.

“I know that I need more room for winter clothes, but I can’t do it,” she said. “I can’t move it because somewhere in my mind I think he’s going to come home again. But I also know that that is not possible, [because] he needs 24/7 care.”

On Wednesday, Raitt shared an update on social media, saying Bruce’s doctors said his condition is “getting worse and has been getting worse for the last three weeks.”

“I never cry on these calls but today I did,” she wrote. “I hate this disease with a passion. Just when you think you are on a flat path and have some hope of good days, Alzheimer’s comes back with a vengeance to remind you that you have zero control.”

However, Raitt said she knows not all is lost.

“I know his doctor says this is about finding what works for him and we will continue to work on it,” she wrote. “But I’m so so tired of battling this beast.” 

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