By Susan Jones
Staff Writer
The nine men in the early-onset Alzheimer disease support group are a jovial bunch. They share stories of the good old days and they brag, making light of memory difficulties as they share a coffee in an office lunchroom. 
Their caregivers, seven wives and one son, meet in an adjoining room at the Alzheimer Society of Alberta and Northwest Territories office in Edmonton. They also sip on coffee and there's a box of Kleenex on the table, because tears, not laughter, are frequent. 
A hundred years ago a German doctor, Alois Azheimer, identified the "plaques" and "tangles" in a woman's brain. In recognition of Alzheimer's discovery in 1906, the Alzheimer Society has launched the second year of its Progress and Hope Campaign to educate people about a disease that directly affects an estimated 34,000 people in Alberta and the Northwest Territories. 

Age related 
The exact cause of Alzheimer disease is still unknown and there is no cure. Until the 1960s the disease was considered a normal part of aging. It was the discovery of the link between cognitive decline and the number of plaques in the brain that led to acknowledgement that Alzheimer's was a disease. 
Risk factors include age, the presence of the specific apoE4 gene, diabetes, previous strokes, previous head injury, previous episodes of depression, family history, education, Down syndrome, some previous cognitive impairment and family history. 
These risks and definitions are not discussed by the members of either group. 
The men appear to want to present themselves as they always were - successful business and family men. They talk about their careers as if they are still working and they discuss the everyday things they've done around the house. They talk about trips, but sometimes the discussion is disjointed and appears to combine several journeys. They joke about their frailties, as if their forgetfulness is no more serious than misplacing a set of keys. 
One man, Jake, talks about his days as a fighter pilot and then later as a recreational pilot. He describes a blizzard that forced him to land, as if the event took place on the weekend. 
Another group member Bill asks, "Why is he here if he remembers all that?"
This makes everyone laugh and soon there are many more discussions about trips.
Cy asks if he was on the trip and then, to much laughter, quips, "Did I have fun?"
The joking is set aside when Dave tries to instil some order. Dave was a professional speaker and once organized whole teams of motivational speakers. He tries to focus the group on finding ways to make a difference, even though they are Alzheimer patients. He explains that it is important for him to get everything organized, but he slips in one worrying development that happened to him in his own home. 
"My wife said that I am never again allowed to use the stove. She said it's a non-discussion thing."
Perhaps the other men can relate to what Dave is saying and perhaps not, because in this discussion, it's hard to understand what they themselves believe is real. Later, in the caregivers' support group, it turns out that forbidding the use of the stove for Dave was an issue some six months ago, but when he spoke, it was if the event had just happened.
The caregivers talk about the reality of having to make medical decisions on behalf of their husbands or father. They ask each other what to do when their loved one decides to charge thousands of dollars on his credit card. They hear that one man, in another group, went out and purchased a home without his wife's knowledge. 
One woman talks about a potential treatment for her husband, who may have cancer, and she worries out loud about whether it's right to put him through intensive, painful treatment when he also has Alzheimer disease.
Grace, who has been married to Cy for 58 years, talked about when "we" were first diagnosed.
"When you get Alzheimer's, you go through it together," she says.
Yet there are two different realities.
"To those with the disease everything seems fine. They still talk about shovelling snow and fixing the house and it sounds as if they are doing all those things," says Alzheimer Society education manager Arlene Huhn. "In the early stages they can fool strangers into thinking they are chatting and sociable, as always." 
Caregivers talk about spouses who, at times, appear to be hallucinating and can no longer remember where they live. 

Boxed in memories
"He told me he doesn't like me any more," says Jane. "He told me he likes the other Jane better and he wants her back. He says I am old and he keeps a photo of me 50 years ago beside his bed."
This lack of recognition among family members is common and eventually the patient may not even recognize his own face. 
"Sometimes a patient will run from their room screaming that there is a stranger following them. When you go back to their room with them, and ask them where the stranger is, they'll point to themselves in the mirror," Huhn says. 
Huhn explains the progressive nature of the disease and compares the plaques in an Alzheimer patient's brain to boxes falling from a truck on a freeway. Every vehicle that follows must steer around the boxes to deliver the goods, or in the brain's case, the message. "But more and more boxes [plaque] keep falling, so the transit of the messages is stopped."
In many cases the patient continues to lose memory, from the present to the past. 
"First they may lose a memory of what happened in 2000. Then they cannot recall the '90s, then the '80s and so on."

Constant confusion
Most frightening of all is the story told by Mary. Her husband was always a do-it-yourselfer. One day while Mary was out getting a few groceries, he decided the thermostat was not working. 
"He went down the basement and tried to fix the furnace. But he can't even find the light switches," she recalls. 
"The husband may not recognize his wife because he believes he is in the past and to him that place is real. He may say he wants to go home, but that is confusing because he is at home. He may think home is the house he lived in 40 years ago and in that house, the light switches were in a different location. That's why he cannot find them."
These caregivers remember the men they always loved. Grace remembers how Cy sang so beautifully in two choirs and every morning she tries to reinforce that by singing with him. She laughs when she hears about his joking ways at the men's support group meeting. 
"He was always great with those one liners," she says, acknowledging that Cy often now repeats himself and she is wary about leaving him alone. To compensate, she has changed her social life and now takes Cy everywhere with her, even to events that she previously only attended with her female friends. 
Grace has noticed she needs to hang onto his arm more when they are in shopping malls, "because my knees are arthritic."
"Sometimes you learn to be sneaky. Are we lying, or are we looking after each other?" she asks. "It's scary, but as you travel the journey of Alzheimer disease, you travel it together."
The Alzheimer Society will host a public forum on dementia from 7 to 9 p.m. on Jan. 24 at Chateau Louis Conference Centre, 11727 Kingsway Ave. The forum is free but participants are asked to pre-register by phoning 488-2266. 
(For privacy reasons, only Grace, Cy, Dave and support group leader Arlene Huhn's names are real. All others are pseudonyms.) 
sjones@stalbert.greatwest.ca