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moderate dementia

Barbara and Gary Grais are still able to take vacations together, as long as they have help or go somewhere Barbara is familiar with.Peter Power/The Globe and Mail

" You'd be amazed how friends drop off. You don't hear from them any more."

For more than 50 years, Barbara Grais was the social planner in her marriage, a talented cook, an avid bridge player and a bubbly hostess. At their dinner parties, her husband Gary's sole task was to pour drinks. They raised their kids, travelled and spent summers at their cottage on Gambier Island. When Gary, an engineer and entrepreneur who worked as a pension-fund adviser, retired in 2004, they anticipated a comfortable, busy life together.

Today, at 74, Barbara Grais is a sad shadow in her own house, padding blankly around the carpeted floor in dull silence. Gary, 75, wakes up some mornings, prepares to face her, and thinks, "Oh God, I have to do this again."

There are no dinner parties unless Gary plans the menu, cooks the dinner and makes them happen, which is not often. Even then, Barbara sits mostly mute at the table, and their friends make awkward conversation. A game of go fish would baffle her, let alone counting trump in bridge.

"For the guy to take on all those things that the wife has always been responsible for, [that]you don't appreciate, can be very overwhelming." Gary says. "Us guys, we've got a lot to learn."

They had better start learning, since caregiving is a task that will fall more often to men in the future: Smaller families means less chance of daughters willing and able to carry the load, more women in the workplace full-time makes the job less likely to fall to them automatically, and, as men live longer, their chances increase of having a family member who needs care.

At his male caregiving group, most of the husbands, all seniors themselves, have already placed their wives in a nursing home, unable to cope. Gary knows he will eventually have to do the same. "I am not putting her in a home until I absolutely have to," he says. But he has laid out three main criteria for this pending decision: when Barbara can't go to the washroom by herself, can't eat properly, or doesn't know him. Then, he says, it won't seem so cruel.

On an afternoon in June, she sits in her living room, an attractive woman with her grey hair in a tidy bob, wearing jeans and a shirt that her husband laid out for her that morning. She confuses how many children she has, and can't recall that she was a secretary for Imperial Oil before she married and stayed home with the kids. Did Gary and Barbara inherit their cottage or buy it? "That's a good question," she says in a placid stage whisper, with hardly a show of curiosity to know the right answer, looking to Gary for rescue.

He does most of the talking: His wife, to his deepest sorrow, hardly talks at all any more. What she does say rarely makes sense.

Barbara was diagnosed with Alzheimer's four years ago, after Gary noticed how often she was getting lost driving home and withdrawing from activities. He realizes now that her memory problems started years earlier. Like most dementia patients, Barbara doesn't understand what's happening to her, so the burden is far heavier on her husband. "I read somewhere that most Alzheimer patients outlive their caregivers," he says. "I believe it."

As Barbara forgets all that she has learned, Gary has been forced to learn everything new. He taught himself to cook ("Stir-fry is the best invention," he says) and he manages household duties that had always fallen to his wife.

One day a week, a personal support worker sits with Barbara so that he can go golfing, and she spends a couple afternoons at a seniors program. They have two trips planned this fall - a cruise with friends who will help, and to their time-share in Palm Desert, Calif., which is familiar to Barbara. But Gary can't leave her alone any more; a few weeks ago, while the care worker was doing the laundry, she wandered out the door and down the street. Their children try to help, but they have their own busy families.

Mr. Grais is a practical man who likes order. He's still adjusting to the fact that his wife lives in a near-constant state of disorder. He finds corn cobs in the dishwasher and dishes from the kitchen in the guest room or stacked in the bathroom. If he tells her the right spot for the salad bowls, "she'll open this door, that door, this door, every door but the one where it should go. She has no concept, no logic." Sometimes when he lays out her clothes in the morning, she will fold them instead of putting them on, or put her bra over her shirt. Those mistakes really drove him nuts at first, and he would find himself barking orders, "There's your clothes. Eat your breakfast." Even though he knew the symptoms of dementia, it took some time to accept that his once-vivacious wife could wear two bathing suits at one time and not notice.

But his bad moods made Barbara anxious - so Gary acquired a skill called "therapeutic fibbing," which involves, for example, promising a trip to Tim Hortons when the destination is really the doctor's office. He's learning to let odd behaviour slide: So what if she eats dessert before dinner? So what if she spends hours picking crumbs from the carpet at the cottage?

"At least," he tells himself, "she's doing something she seems to enjoy." There aren't many activities that still fall in that category. Other than a current obsession with the cat, not much interests her.

She still accepts his hug warmly, but there's no real intimacy in their marriage. Once, a while ago, when he tried to make love to her, she protested, "We can't do this. I hardly know you." (When he shared this story with his support group, one with both female and male caregivers, others chimed in with their own tragically comical versions of rejection.) Sometimes she'll look at him as though he's a stranger and talk about him in the third person: "Gary would like this," or "Gary sleeps there."

But what really destroys him is the unending silence: the death of conversation. He longs for the days when he would come from a golf game and Barbara would brightly ask him about his score. Or gossip about their friends. Or discuss the plot of a movie.

He has lost the keeper of his own memories, the partner who could recall a detail from a trip that he had forgotten, or pull up a scene from the time when the kids were young. Every day is a silent one, absent of those simple bits of chatter that fill up a marriage. For Gary, that's the greatest loss of all.

He knows that Barbara, on some level, also feels it.

"We don't appreciate all the things our partners do for us until it's too late," he told a friend recently. Barbara, overhearing him, started to cry.

See more from The Globe's Dementia: Confronting the Crisis series here