Lisa Raitt is fighting a battle that makes any challenge she ever faced as a Member of Parliament and Senior Cabinet Minister pale by comparison. The former MP for Milton was also the first woman named as Deputy Leader of the Conservative Party of Canada (CPC). For more than a decade, she made headlines as a force within the CPC and made a run for party leadership in 2016-17. That’s all in the past. Today, Raitt spends her energy thinking about the immediate future as she cares for her husband, Bruce, who’s in the later stages of early-onset Alzheimer’s disease (sometimes referred to as young onset).
Any caregiver of a loved one with dementia can testify to the cruelty of the disease’s progression. At first, it slowly strips away a person’s memory and cognitive sharpness. Then, the process speeds up, hastening the loss of speech, non-recognition of loved ones, inability to care for oneself and ultimately, complete dependence on others. In Raitt’s case, the situation is made even more difficult, since Bruce is part of the three per cent of Alzheimer’s patients who are diagnosed before the age of 65. For these patients, all plans and dreams for the future disappear, replaced by the disease and its impact.
Raitt granted Baycrest the following exclusive interview for publication in BrainMatters magazine shortly after Bruce was admitted to the hospital’s behavioural neurology inpatient unit.
Q: What are your concerns for Bruce?
Lisa: I worry about him. We’ve been working so hard together with Baycrest and other caregivers for such a long time; and I’m worried he’s not getting better. We need to control his responsive behaviours better so he can get some sleep and eat more.
Q: What’s your experience with Baycrest been like?
Lisa: It’s been fantastic! Bruce has been part of it since 2016. We went to Baycrest for our second opinion. We ended up going right to the top, talking to Dr. William Reichman. I was blown away that the President and CEO was so kind, gentle and understanding with Bruce, who was grappling with the knowledge that he had a disease that was unfathomable to him. That conversation really set the tone for what kind of standard of care I was going to expect in everyone going forward.
Q: As a caregiver, what has your experience been like from day one, when the diagnosis happened, through to today, in terms of your ability to navigate it emotionally and your daily routine?
Lisa: How do I feel? I feel like I’m never good enough. I’m never ahead of the curve. I’m never on top of what’s going on. I’m always chasing down the next symptom, the next behaviour, the next issue. One of the reasons I went public with our story was because I read about Jill Daum (wife of the late John Mann, singer of Spirit of the West, who also battled early-onset Alzheimer’s before succumbing to the disease in 2019 at age 57) going public about John’s illness. Hearing her story was the first time I realized that Bruce was also going to deteriorate to a point where he may not be recognizable. That was a real big wake-up call for me. If you watch movies and television shows, they skip all that in-between stuff. They go from diagnosis, where it’s “I lost my keys a couple of times,” and then suddenly they’ve passed away. There’s a whole lot that happens in the middle.
Q: This new life of living with early-onset Alzheimer’s must feel very different from the one you lived before in the public eye. How have you adjusted to it?
Lisa: As someone who was successful in a political career, where you’re always on top of the issues, this is a really humbling experience. It’s the helplessness. To know that you just don’t have any control and that you need the maximum amount of help that you can possibly get. I call every night to the nurses’ station and go through my checklist: Is he eating? Is he wearing his clothing? All the little things that I need to know, so I can gauge where he’s at. Especially now, because I don’t have eyes on him due to COVID-19 restrictions. And there’s always something new that pops up and I’m not prepared for it.
Q: Caring for Bruce takes up most of your time. But how have you made space to care for yourself?
Lisa: I’ve been attending online support group meetings. That’s been huge. I’m in a group with a bunch of really loving caregivers who openly share what’s going on and how they are doing. The therapist who leads the group has gone through it all, too. They have been complete anchors for me.
Q: What advice do you have for people who are just getting a diagnosis of early-onset Alzheimer’s?
Lisa: I would tell them there are good days ahead and you’re going to have really good experiences because, you’re now in a situation where you realize that if your spouse is saying something to you that makes absolutely no sense or has forgotten your birthday, it’s not because they don’t love you. It’s because they have a terrible disease. So let go of the idea that your spouse has a motive in anything he or she says or does, because there’s no motivation; it’s just the disease. Give them the unconditional love that they will absolutely give you back. I would also tell them to make a bucket list. Start it and get it done because this disease moves quicker than you think. Lastly, be very aware of what the stages of Alzheimer’s are. Read as much as you can and plug into some kind of group that has a lived experience so that you can understand it and you have a reference point.
I hope sharing my story allows others going through the same thing to feel more comfortable. The key is to look after yourself and talk about it. To support research and care at Baycrest, visit www.baycrest.org/supportresearch.