Outside Lisa Raitt‘s Milton, Ont., home Monday afternoon, the former Conservative MP and federal transport minister takes a rare break from caring for her 61-year-old husband Bruce Wood to speak with Global News, but it doesn’t take long to think about what awaits her as a caregiver and a parent.
“I’m living hour by hour. Like literally right now what I’m thinking is my son has to be picked up from something at 4:30 and what am I going to do between now and 4:30 with Bruce to keep him occupied and in the back of my mind, is he eating? Because he’s not eating anymore,” she said.
“I’m worried about whether or not he’s going to be cranky, can I get him in the car, what do I have to do… like literally thinking about what do I have to do to calm him down to make it through to his bedtime at 7 o’clock, and then when 7 o’clock comes is he going to stay in bed or is he going to be up and down the stairs eight times between 7 and 9 p.m. like he was last night, and then the fear of whether or not I’m actually going to get any sleep again.”
On Thursday, Raitt made a decision to share an insight into her world as a caregiver. She posted a video on Twitter of Wood pacing in their bedroom, saying a few words at a time and making sounds. At one point he cursed while throwing what appears to be a glove.
“What can I do?” Raitt can be heard asking.
“I don’t know. Get up and go … right now… Jesus Christ,” Wood replied, before growling, kicking a piece of furniture and leaving the room.
In the video, Raitt can be heard telling Wood she would leave.
“Here’s what it’s like when someone you love has young-onset Alzheimer’s,” she wrote in a tweet, which has since been viewed almost 32,000 times.
The circumstances of today are a far cry from when Raitt and Wood first met. She said the couple, who were both married previously, first met in 2008 while they worked as the CEOs of the Toronto and Hamilton port authorities (Raitt and Wood, respectively). A year later, they became a couple.
But in 2016, a devastating diagnosis was confirmed: Wood, then 56, was told he had young-onset Alzheimer’s and became one of nearly half a million Canadians who have dementia. Raitt said she was determined to have a great family memory while they were still able to, moving to get married six weeks later.
“I really didn’t think I’d ever get married again. We have a mortgage together, that was enough kind of thing,” she said.
“But after he was diagnosed, I knew that he would want certainty that as Alzheimer’s took hold and his cognitive abilities did decline I wanted him to know that we were bound, not only in terms of financially, but we were bound together. We had decided to take a huge step in getting remarried, and he loved the wedding.
“Bruce doesn’t remember that we’re married now, so I get to say to him we’re married instead of we’re living together.”
Before Wood’s diagnosis, Raitt said signs of the disease existing in the background and weren’t immediately obvious.
“Things were not great and it wasn’t a very pleasant relationship we had, and then he was diagnosed and all of a sudden I realized, ‘Man, it was a disease,'” she said.
“It wasn’t him not loving me, it wasn’t him being rude, it was a crappy disease and his brain was deteriorating and I realized, ‘OK, nothing else really matters and we’re going to get married.'”
After the shooting at Parliament Hill in 2014, the mother of two was worried about her children but she said it was the lack of contact with her husband that caused concern.
“I didn’t hear from Bruce once. Didn’t call to see if I was OK. Didn’t worry about me — completely not worried about something that was happening, and I thought, ‘Boy, what is your problem?’ And now I realize that I should have known from 2014, 2013, 2012 that he was exhibiting some serious signs,” Raitt recalled.
Fast-forward several years and Raitt said Wood’s personality noticeably changed, especially during the coronavirus pandemic. She said in March he was talking, noting it was “really good,” but began faltering in May. Raitt said Wood became angry and aggressive starting in June.
“By the time we got to September, October, he really can’t even string a sentence together and it’s a lot of gibberish and babbling. We can’t interpret what he wants anymore, we just don’t know,” she recalled.
“He knows I’m important and he says he loves me, and I totally believe him when he’s cognizant, but there’s no partnership. I don’t have a marriage anymore. I’m a caregiver. He is my charge.”
Wood had to resign his position with the Hamilton Port Authority after some of the symptoms began showing at work. Raitt said the disease robbed him of many of his passions: interactions with friends and family, golf, reading, watching television and some outings.
“We’ve got years ahead of us,” she said.
“We can’t go to Costco anymore because he sees himself in the mirrors in the freezers and he wants to fight the person because he thinks he’s being followed.”
Raitt also referenced an instance where she had to call police and paramedics because Wood was getting angry. She said she always carries her keys, has identified multiple exits from the home, has hidden all knives, keeps two cellphones charged and even has a safe room — all steps to protect herself should things escalate.
“He’s a big guy: he’s six-two, 250 pounds, and when he’s punching holes in the wall, you get worried,” Raitt said.
The disease has taken a toll on Raitt though. She said she, like so many caregivers of people with Alzheimer’s, is drained.
“It sucks the life out of you and you lose yourself. You don’t know who you are.” “When I get a moment of respite, I’m sleeping,” she said.
“If I’m reading a book, it’s an Alzheimer’s book or a study or a survey, or I’m on the chat boards trying to understand what the next step is for me and helping other people.
“I’m absolutely exhausted and I know caregivers are exhausted. And I know a lot of folks are going to write in on social media and say caregivers got to look after themselves first, it is really hard to put yourself first.”
Highlighting the difficulties sleeping, she said she only slept approximately 45 minutes Sunday night into Monday morning because Wood was walking around the house looking for “the demon that was chasing him.”
Despite everything Wood and Raitt are going through, she said she is grateful he can still find some joy — for now — such as getting a card in the mail, soaking in their hot tub and enjoying the occasional Skor Blizzard from Dairy Queen. The family marked Wood’s 61st birthday on Sunday.
Raitt’s escape, when she can, comes through her work professionally. But COVID-19 restrictions have meant working from home, which can be a struggle for privacy. While a caregiver comes for part of the day, she has to juggle work duties with caregiving at times.
“When I sit down and I work, I actually get lost and I like it,” Raitt said.
“He’s constantly going to come in or want and see me … you’re on guard all the time. Even when you’re sleeping, you’ve got one ear open, one eye open all the time.”
However, Raitt said she can’t imagine any other life.
“I actually don’t regret anything. I think I’m more fearful of the decisions I’m going to have to have to make going into the future when I can’t provide him the level of care that he needs and what it means in terms of how emotional he’s going to be, that’s the hardest part,” she said.
“Getting married was easy. The hard part is figuring out when is the last time he’s going to be living in his house.”
A supporter of a $50-million national dementia strategy put forward by the Liberal government in 2019 after a previous attempt didn’t pass, Raitt said she’s cautiously optimistic for what the future holds.
“If we’re all relying upon the government to try and come up with the answer to the questions around dementia, then we’re putting our eggs in the wrong basket,” she said, calling for money to be directed toward research, especially young-onset Alzheimer’s, as well as niche recreation programs for younger adults.
“There needs to be something done with it.”
Meanwhile, Raitt said she had advice for Canadians who might get the disease and for caregivers. The first step is if you think something is wrong, even in people who are in their 50s, get it checked out.
“The worst part is just putting your head in the sand and waiting for something to happen to you because then you have yourself in a real situation, but if you’re aware this could happen it’s good to compare notes with someone,” she said.
“It’s devastating. There’s not a good path ahead of you. Enjoy the day you have and know that you’ve got to be ready, got to be strong.
“As a caregiver, know when is your limit … There’s no gold star for putting yourself in an early grave just because you’re trying to help somebody else who has a terrible disease.”