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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 ...

"I think he had moments when he knew how bad things are. So damn sad it hurts." - Oct. 3, 2008, journal entry

"How is that, Roger?" Donna murmurs, tipping the glass of beer back from his lips, wiping the drip from his chin. "Was it good? Do you want some more?"

Roger speaks in what Donna calls the Alzheimer's language, communicating with a tightened grip, a piercing look, a rising staccato of "wawawawawawa" sounds. He grins crookedly, usually at Donna. "Look at that smile," she says. "Isn't that beautiful? Omigosh, I love it." Occasionally, he gets a word in the right place; yesterday, he chirped "Hi!" when Donna walked into his room and made her day. "I'd give anything," she says later, "to see inside his mind, to know just for a day what's going on in there."

To follow Donna for a couple of days is to understand full-time caregiving. She is reluctant to be away from Roger even for one evening. (They've been together since 1979. Donna has two children from a previous marriage, and Roger has three, but all but one now live outside the province, and Donna wants them to focus on their own lives.)

Donna feeds Roger each night in the common area, where she chats with the staff and the other residents. She knows them all - the birdlike woman who pulls her wheelchair around by her slippers and earnestly whispers incomprehensible sentences, the man drooping in his chair who will repeat back anything spoken to him like parrot. She chose Pine Grove for Roger because it was small enough to feel homey, and though the rooms are small and the building is showing its age, it has a lovely path along the river. Donna, elegant at 69, with a white streak in her hair courtesy of her hairdresser, exudes cheerfulness, and has a folksy trick of somehow making grim and depressing subjects seem less so. She leaves snacks for the staff in their lunchroom; on this week in June, she has purchased a birthday present for one of the other residents.

Her world, she admits, has grown smaller. "It's easier to withdraw from life and not look at the way you are supposed to be living." She needs a new car and has no time to look for one. She knows every detail of Roger's care, down to whether she should hold the prunes for dinner that night. When she's not at Pine Grove, she is often still caregiving, visiting her mom, who moved into an assisted-living residence after Donna's father died.

Pine Grove is where she is happiest, sitting and talking with Roger. "What I am doing isn't a sacrifice," she says. "It's the time I have with him. It's what we have left that is intimate and special."

Her nightly ritual with Roger is always the same, and she carries it out with a wifely intimacy one would imagine long missing from their relationship. She whispers in his ear and caresses his arm, offering the extra sandwich he likes at bedtime. Before he is lifted into his bed, she gently removes his shirt, washes him with a facecloth, brushes his teeth and wipes his balding head and face with Givenchy lotion, so "he'll smell nice," she says, "when the nurses flip him over in the middle of the night." She has been doing it so long that every movement is fluid, every touch certain. When he is in bed, she pulls his blind, and sorts his laundry, as if finding an excuse to linger. Usually, he is sleeping by the time she kisses him good night and leaves for home.

"You might think, 'How does she do that? Why does she do that and still show peace and joy.'" Because, she says, this is so much better than it was before. Now, she can imagine, he is peaceful, his needs are met, he has someone who loves him.

"You might think, how does she do that? Why does she do that and still show peace and joy." Because, she says, this is so much better than it was before. Now, she can imagine, he is peaceful, his needs are met, he has someone who loves him.

"I am a woman in love," she says. "I haven't written the end to this love story yet."

It's coming, she knows, and it will be painful.

"But right now I can focus on what we have. On the good things." Like holding hands. And beer in the afternoon. And those briefest of moments, when the fog seems to lift and she gets him back, the Roger she still remembers for both of them.

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