Loving and losing Bruce: Lisa Raitt opens up about caring for her husband, who has young-onset Alzheimer’s

Hold my hand," he says, the voice barely above a whisper.

OK. I've got it," she says.

I know."

Bruce Wood stands next to his wife, Lisa Raitt, in the kitchen.

Dark wavy hair, a few days stubble; at a glance he doesn't appear much different than when you saw him four years ago.

But the broad shoulders of the man who no longer builds cabinets in his workshop, or plays golf, or uses a phone, are now rounded, stooped.

Holding her hand he stares at the floor like a shy boy might.

He is wearing two different shoes and one of them is his stepson's.

His eyes have an empathetic, teardrop shape, but his gaze seems empty, as though memory and understanding have vanished or been locked in a compartment he can't open.

At 61, the former CEO of Hamilton's port authority has young-onset Alzheimer's disease, sometimes called early-onset.

Raitt, the former Milton MP, is losing him - and loving him, caring for him, through sleepless and at times frightening nights, and frustrating, heartbreaking moments.

He was diagnosed in May 2016, among the five to six per cent of patients who develop symptoms who are under 65.

In some cases the disease is inherited, in others it's a mystery why it develops. After extensive testing they learned Wood does not carry the genetic markers for dementia.

Raitt and Wood dated a few years and married four months after his diagnosis. For each it was their second marriage.

Looking back on her decision to marry Bruce, when she knew to some extent what lay ahead, does she ...

Zero regrets," she says, pre-empting the question. I'm happy I did it. I fear what would have happened to him. I think he would have gone longer without being diagnosed if he lived on his own... We spent three years together in a solid relationship, travelling, having a really good time."

The wedding was out east in Cape Breton, near where Raitt grew up next door to a steel mill, when she was Lisa MacCormack.

It was a big local event, she was the local girl who made it as a member of Parliament, who served as a federal cabinet minister in three portfolios, and was about to run for the Conservative Party leadership.

After Wood was diagnosed she cried in bed for four days, then set her mind to their future.

Raitt is a straight-shooter with a quick maritime wit. Wood used to affectionately call her one tough chick," and with irony: princess."

In the first three years after his diagnosis, caring for him mostly meant support and encouragement: help with navigating an airport to take a trip, assisting with memory lapses, finding the car keys he kept losing.

Wood scored 23 out of 30 on his initial MMSE cognitive acuity test, a result that suggests mild dementia.

Raitt felt her role was offering a sense of calm in his gathering storm, sensing that he felt a degree of shame about what was happening to him.

Wood is a business graduate of Acadia University, and was CEO with the harbour authority and before that with the Hamilton auto club.

In 2017, Raitt lost her bid for the party leadership. Bruce had supported her decision to run, and she had been determined to do it all: campaign, take care of him, plus raise her two teenage boys.

But in the end she felt she couldn't put in the energy she needed to win.

I can see that now, but if you had suggested it to me back then I would have ripped your head off."

After losing her seat in the 2019 federal election she was hired by CIBC as vice-chair of global investment.

Early in 2020, she commuted to Toronto from where they live in Milton, 30 minutes northwest of Hamilton.

Wood was in decline but managing reasonably well alone in the house. Raitt had video cameras installed so she could monitor him during the day.

One day in March, he left her a voicemail, asking when she'd be home. Raitt saved the message, feeling like it might be the last one he would have the mental capacity to leave for her. And it was.

Over the summer he started to become more easily agitated, often when he saw his reflection, as though spotting a man out to get him. He slammed a new truck they bought with a hedge clipper to get at the reflection.

Raitt removed every mirror from the house and all the sharp knives.

Still, in the fall she says Bruce had a few golden weeks, when he seemed relatively calm, went to bed early and slept well. She hired caregivers to come in five hours each day so she could work in her home office.

But then the aggressiveness returned, and he started following the caregivers around the house. It made them nervous and they asked her to reduce their hours with him.

Caring for a frail 98 pound elderly dementia patient is much different than this," she says. He's 6-2, 240. I'm not saying he would do something, but we don't know. The caregivers need to feel a comfort level."

During a recent morning visit at the house, Wood repeatedly walks in and out of the kitchen. He says little, but when he does, it's a few words, or gibberish.

Why am I talking to you?" he says out of the blue to his wife, and growls. Then he swears at her.

Do you know who I am Bruce?" she asks.

No."

Friends continue to send her books and articles about Alzheimer's. She's read them all.

He takes more than a dozen pills daily, including an antidepressant and a tranquillizer, but his doctor is trying to find the best medication regime to keep his anger at bay. Raitt talks to a neurologist each day to discuss his case.

He won't go to bed unless she is with him but then he barely sleeps, spending hours walking around the house.

One night he hit her. Raitt's sons, who are 19 and 16, saw the incident on the camera recording, and started spending more time at home feeling protective of her, although she says she does not fear him.

He recently smashed ceramic Christmas decorations her sons made when they were little. She was upset, but forced herself not to show it.

She took him to the doctor's the next day, and he was given the cognition test. This time he scored four out of 30. That suggests advanced dementia.

The curve is like this," says Raitt, sketching a line on a piece of paper to show points in her husband's continuing journey into darkness: the curve shows a gradual decline in the first few years, but now is falling steeply. In the next two or three years, it will level out, and he will be less of a physical risk because his body will no longer respond to commands from his mind, and he may be in a wheelchair.

It's a sobering thought," she says.

Wood has three children with his first wife, who live in Fort Erie and Halifax. He has three older siblings spread out across the country. His parents have both died, but sometimes he calls out for his father, even though Raitt is certain he knows he is gone.

She is trying to find a spot for him at a care facility, determined to avoid calling 911 to have him admitted to hospital. The task has been made more difficult by COVID.

She regrets not looking into care for him last spring or summer.

I figured I could handle it, but I didn't realize how much there was, and during COVID his decline happened faster. I had a complete misunderstanding of the effort that would be needed. No one told me about the lack of sleep, for one thing."

She believes caregivers for dementia patients need to share their stories, and she takes part in a weekly Zoom forum that offers a place for it.

If she could encourage anything, she says, it's that the public support and donate to groups that support caregivers.

There are still moments of affection with her husband, she says. He will kiss her on the head, or hug her, although he hugs his caregivers, too. Raitt believes he still knows the difference, at least sometimes.

What gets to her most is that in Bruce's eyes she sees no light of recognition, or no hint of gratitude for what she's trying to do.

So that's the other hard part," she says, her voice catching, and eyes tearing.

You wonder if, contrary to appearances, Bruce Wood experiences fleeting periods of clarity, but his brain is unable to give them voice - or if such a capacity would be the most terrifying prison of all.

In the kitchen he takes a bite from a doughnut, which is among the few things he enjoys eating.

Raitt is about to take him for a drive, the rare activity that relaxes him and often puts him to sleep.

Before they go, she cradles his hand in hers.

Hi love," she says, standing close to him, looking into his downcast face, vying for eye contact.

He leans in, whispering in her ear for what seems a long moment, and in that frame they are a couple, just Lisa and Bruce, like that breezy day by the ocean when storm clouds magically parted and they exchanged vows in front of their families.

He releases her hand and shuffles into the living room.

In that instant was it there, some kind of spark in his mind?

You hesitate to ask.

What did he say?

Nothing," she says, and smiles gently. He said absolutely nothing."

Jon Wells is a Hamilton-based reporter and feature writer for The Spectator. Reach him via email: jwells@thespec.com