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Donna always kisses Roger good night before she leaves him. (Peter Power/Peter Power/The Globe and Mail)
Donna always kisses Roger good night before she leaves him. (Peter Power/Peter Power/The Globe and Mail)

Severe Dementia

Roger Macdiarmid: The calm after the storm Add to ...

But love didn't make it easy. In 2005, Roger lost his driver's licence; by then, the driving, the gas pumping, the bill paying - all those jobs were Donna's alone. In the spring of 2006, she was diagnosed with throat cancer, and he couldn't understand why they kept making trips to the hospital for radiation treatment.

"The beauty was he didn't sit and worry," she says. "He was calm then, so his presence was comforting." But she couldn't rely on him - even sick, she cooked and cleaned and kept him safe.

His symptoms slowly progressed. He was suspicious when she talked on the phone with friends, and he insisted that she go to bed when he did. At night, she would worry about him leaving the house. "I heard a story about a lady who tied her husband's legs to her with a bungee cord so she'd wake up when he did," she says. "It didn't get that far. But I was pretty close." She jokes: "There were times when I wish he would get lost."

Donna and Roger Macdiarmid share a private moment.

He went through a phase when he polished the sink obsessively. When they ate, she had to cut his food. He became afraid of water hitting his face, and nervous about sitting on the toilet, and she'd have to help him urinate.

"You'd think that a man's dignity would be so threatened by that," she says. "You worry about that ahead of time. How am I ever going to do it? But by the time they get to that stage, they aren't really thinking about their dignity."

And slowly, anger began to creep into his behaviour. In 2006, he bashed on the side of their neighbor's house with an axe, cursing about some imagined slight; the police gave him a warning, and a change in his medication seemed to calm him down. He refused to go to her father's funeral, frustrated about not being able to tie his tie. At other times, he wept in frustration, confused about where he was, not recognizing her.

One morning, while he was still in bed, she sneaked his old shotguns out of the basement, wrapped in blankets, and hid them in the garage until her brother could take them away. "I didn't think he was going to shoot me or anything," she says. But having guns in the house didn't feel safe any more, even if he had only ever used them to scare the squirrels from the birdfeeders.

"When something is happening in the brain that makes somebody psychotic, you don't know what they are going to do. You can second-guess all you want. But there's a chance they'll do something terrible."

"Storming tonight. Scary. Roger had a terrible evening - pacing, crying, wanting to go home, hitting things, etc. I finally got him quieted down around midnight. If it hadn't been for the storm, I would probably have called 911. I can't do this any more. But my heart aches for him. He is so tormented." - Dec. 3, 2007, journal entry

Three days later, Donna packed a small suitcase, told Roger they were going to the doctor for tests and took him to the hospital, knowing he was probably never coming back to the house he had built for her. She sobbed all the way home that night, and for many nights afterward. Roger fell apart in the hospital, forced to share a room at times with noisy or dying patients. Restrained in a wheelchair for most of the day, he soon could barely take a step. He often wept when he saw her. "Look at me," his eyes said. "Look where I am."

While Donna fed him supper, he would hallucinate, imagining himself in the heat of battle, struck by bullets, as if feeling real pain. He cursed and yelled, once even threatening to kill her, and he was impossible to soothe. He heaved his pills across the room, swinging wild punches, too aggressive to be placed in a nursing home, even if there had been a bed available. More than once, the hospital security had to hold him down, while Donna watched, and tranquillize him. They went on this way for nearly 15 months, until finally the right combination of medication calmed Roger, and a room became free in the Pine Grove nursing home.

"I believe I am a strong person," she says. "But I've seen me running through the halls of the hospital, screaming, 'I can't do this any more.' Two or three times, I just lost it."

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