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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 ...

"Roger looked up at me and said, 'I love you.' I cried and cried - with joy. It has been so long." - December, 2009, entry in Donna Macdiarmid's journal.

Every afternoon, Donna Macdiarmid drives alone from her country home 45 minutes into Fredericton to take her husband a beer before dinner. Most nights, she stays until he falls asleep. She doesn't like to leave him when his eyes are still open, and when she still hopes that a piece of the man he once was might reach out of the fog and speak to her. She has made this winding journey along the Saint John River for nearly three years now, coming home through the snow long after dark, plowing her car through flooded parts of the road in the spring.

During the worst times, when Alzheimer's disease made Roger mean and ugly, she sobbed all the way and felt like driving into the river. She'd give herself "a kick in the ass," and carry on. "No pity parties," she likes to say.

This is her all-consuming job, one that still falls mostly to daughters, sisters and wives, like Donna. She guarded Roger when he was getting lost in his own house. She made sure he wasn't neglected in the hospital when anger and psychosis made him too dangerous, at first, for a nursing home, as it does for many dementia patients. Now, she visits each day to monitor his medication, wash him and feed him.

It gives Donna great comfort knowing that Roger's needs are met.

After 10 years of caring for him, she says without regrets, "He is the centre of my universe."

The beer is a perk, a taste of their old life. Just like the pyjamas and shirts that she carefully presses and hangs in Roger's closet, a wifely ritual she can't relinquish. Roger was always particular about his appearance, the ingrained habit of a career soldier who made more than 240 jumps with the Canadian Airborne Regiment and was promoted through the ranks to captain. A 1984 framed picture on the wall by his bed shows him receiving the Military Medal of Merit from governor-general Jeanne Sauvé.

Now 70, he is barely recognizable, a grey, caved-in wisp of a man, unable to hold a spoon or speak a sentence. The best he can muster up is a stuttered string of consonants and vowels, like a skipping record, or an occasional, softly whispered "yeah," and Donna fills in the blanks, creating conversation around them. "That's right, Roger," she agrees. Or teases: "No bad language, please." Or woos: "Are you singing to me?" Sometimes, she thinks she hears a word slipping through, but it's probably wishful thinking.

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. Donna Macdiarmid

This is how they spend their time together: Donna trying to peer inside her lost "beloved," listening and caressing his paper-thin skin; Roger, with his murmurs and his firm grip and his fierce stare, trying to get out.

And these days, Donna says, are the good days.

"Roger unable to get the car in gear. I had called the tow truck before I realized it was only because he didn't have his foot on the brake." - January, 2005, journal entry

First, Roger started losing his keys. All the time. Or mixing up names. Parking the mower in the middle of the lawn and forgetting to turn it off. He couldn't remember their wedding day. "I stayed mad about that for three days, I did," Donna recalls, finding a smile. "Because I didn't know he was sick. That pretty well tells you either he has desperately fallen out of love, or his memory's gone."

It was 2001, and they were finishing up their dream home, a cottage-style house with a stone fireplace that Roger built himself and a rolling garden to the shore of French Lake. They went to the doctor, and got the diagnosis: Alzheimer's. It wasn't a surprise, though Roger was only 60; both his mother and his older brother had been diagnosed with the disease.

"We just went ahead with our lives," Donna says. "Bad moments are just the things you get past."

Roger could still make her laugh: His Alzheimer's bracelet, he joked, should read, "Dummy at large." And he never wanted to be away from her, which had its own intimacy: "I never felt so loved in our whole relationship as then," Donna says, "when he was trailing me around this house."

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