"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.
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."
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."
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."
"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.