TORONTO — Former Conservative MP Lisa Raitt is speaking out about the violence she and her children face as her husband struggles with early onset Alzheimer’s during a pandemic that has blocked a normal course of treatment.
In a radio interview with The Evan Solomon Show on Thursday, Raitt said that her husband Bruce Woods, 61, wakes up frequently throughout the night, wandering the house muttering and cursing. His “throes of behavioural, psychological symptoms” happen every day, all day. He calls her “mommy” now. She can’t work until he’s sleeping or has a hired caregiver with him, which is only about five hours a day.
The situation has been turning violent more and more. This summer, he shoved one of their sons. Last week, he punched Raitt.
“I know it’s uncomfortable for people to hear but it’s a reality,” she told host Evan Solomon.
“This is where we always tell each other it’s the disease, not the person.”
Raitt and her sons have had to implement safety precautions inside their home. They hide knives and other potential weapons. They installed locks on the doors of several rooms in case they need to retreat to one. They make sure their cell phones have a sufficient charge at all times. They set up video cameras throughout the house so they know where he is if they need to leave.
“But the biggest precaution us getting in touch with your doctor and making sure that there are medications that can help and not being ashamed of asking for that help in that way,” she said. “That’s what has been the last six to eight weeks of our lives right now.”
‘I’M OUT OF MY LEAGUE’
The COVID-19 pandemic means the typical course of treatment for someone like her husband isn’t possible. Normally, he might be in a hospital and they’d more easily be able to “find the right cocktail of drugs” so that he could be “the normal Bruce that I knew.”
“But what we have now is a situation where I’m getting Telehealth prompting and coaching,” she said. “I’m the nurse that’s charting all of the reactions and the treatments. I’m out of my league.”
Raitt has been looking for a long-term care facility that can take her husband on, but with COVID-19, it’s more challenging. Plus, a home is unlikely to take him until “his moods and his aggressions even out,” she said, so there’s no other option but their own house. “The option of him being hospitalized in a psychiatric ward isn’t there for me because of COVID,” she said.
Earlier this month, Raitt posted a Twitter thread about the difficulties, including a video of Bruce pacing their bedroom, babbling and cursing. She feels a need to speak out about it, she said. On Thursday, she told Solomon that ever since her husband’s diagnosis, she knew she’d share the story in an eventual memoir, but realized that she shouldn’t wait. Why not share now when it can have an impact on other people’s lives and “move the narrative” forward on young-onset Alzheimer’s.
PRESSURE ON CAREGIVERS
Part of what has motivated her is the stigma around admitting that caregivers struggle too. After the diagnosis, the focus is “all about the dignity of the person with the disease,” she said. The focus is on trying treatments, helping them live their best life and being “gung-ho about wanting to find a cure.”
“And then at some point it flips over and the the amount of pressure that is at play is really on the caregiver,” she said. “There is a point in time when a story isn’t about the person who’s suffering from Alzheimer’s, but the story is also about the caregiver around.”
A recent study out of Australia, found that 94 per cent of dementia caregivers were sleep deprived, a condition that can lead to worsening health effects and can make a caregiver more likely to seek space in long-term care for their loved one.
“Enabling people living with dementia [of which Alzheimer’s is a common cause] to stay at home, rather than transfer to long-term care is the optimal outcome for many families, but this can’t be at the detriment of the caregiver’s own wellbeing,” said Aisling Smyth, a co-author of the study out of New Edith Cowan University, in a news release. “Therefore, to support the person living with dementia to remain at home, preserving sleep and maintaining caregiver health is vital.”
For Raitt, one of the best ways to try to preserve caregiver health is through speaking about it. “Talking about it is good,” she told Solomon. “It acknowledges that there is a real issue that either I can be inactive and ignore or I can be active and deal.”
And sharing the intimate details of her family’s personal battle with the disease might help bring more attention to Alzheimer’s research or shine a light on the breadth of suffering.
“There are a lot of families out there suffering through exactly the same thing,” she said.