Gradual disappearance

When David Nixon began to have memory lapses as he was nearing retirement in 1999, he simply attributed them to stress.

But as they became more frequent, the then-65-year-old, who was working for the government as a records analyst in Victoria, started looking for answers with his longtime partner, Ken Sudhues. Finally, in late 2000, he was diagnosed with dementia, a neurological disease that has no cure.

“It was bloody unfair,” says Sudhues, who was 44 at the time.

Nixon, now 71, is not alone. According to the Alzheimer Society of BC, 61,000 British Columbians have some form of dementia, the most common of which is Alzheimer’s disease. Dementia is generally characterized by a loss of memory, judgment and reasoning, mood changes, and often affects a person’s ability to function at work or perform the activities of daily life.

Nixon’s diagnosis doesn’t prevent him from living his life to the fullest, or from recalling the details of that full life.

Born in Vancouver, he moved east at a young age and spent most of his childhood in Ottawa. At the age of 19, he became a cryptographer for the now-defunct External Affairs department of the Canadian government, a position that took him to places such as Cambodia, Germany, Indo-China and the Congo.

But his life changed at the age of 25, when he requested leave to vacation in Capetown in 1961. He received a surprisingly terse denial from the government and was ordered to return to Ottawa.

After working on Parliament Hill for two weeks, Nixon received a phone call from the RCMP-telling him that they needed to speak with him immediately and he was to hang up the phone, go outside to a waiting car and tell no one that he was leaving. Believing that he was to take part in a secret government mission, Nixon eagerly complied.

What he was confronted with was a tiny, cramped room and a bright overhead light shining in his eyes.

“It was like something out of a bad movie,” he recalls. “The opening comment was: ‘We have reason to believe you are a homosexual and if you don’t resign immediately, we will have to take legal action.'”

For Nixon, this was like a bolt out of the blue. Completely shocked and appalled, he left the government and moved to London, England, where he lived with an actress friend and helped out with electrical work on stage sets. Feeling unfulfilled, he moved back to Canada to live in Montreal, where he sunk into depression.

He was then referred to Dr Ewan Cameron, a psychiatrist at the Allan Memorial Institute in Montreal who ran experiments for an initiative called MKULTRA, a CIA-directed mind control research project.

Dr Cameron’s methods included induced comas, insulin therapy and electroshock therapy. Nixon, who had access to confidential information while working for the government, was subjected to electroshock therapy treatments that completely wiped out his short-term memory.

Though there are no concrete studies that prove a connection between electroshock therapy and neurological disorders, Nixon muses on what might have been.

“I still wonder if those massive electroshock treatments have brought on the onset of this [dementia],” he says.

Nixon moved back to Victoria in 1977. He met his partner a year later when they were introduced by Nixon’s goddaughter at a party, and they’ve been together ever since. They married in 2003.

After Nixon’s dementia diagnosis, both men sought help and support from the Alzheimer Society of BC, attending monthly support groups. As far as they know, they are the only same-sex couple in British Columbia who has contacted the Society for assistance.

“There must be other couples out there who are going through this,” Sudhues says. “Where are they hiding? Why are they hiding?”

Sudhues and Nixon are open about their relationship in their support groups. They attend meetings separately, with Sudhues in a group for caretakers and Nixon in a group for dementia sufferers.

“We’re just open and honest about who we are and always have been,” Sudhues says. “I’m not about to go back into the closet.”

Still, he says, sometimes he finds meetings a bit awkward. “The pronouns get in the way sometimes. I see people’s facial expressions, the winces.”

Nixon says being gay isn’t an issue in his group.

“It’s never come up one way or another,” he says. “There’s a lot of laughter. We sit around talking about what we forgot last week.”

According to Ariela Freidmann, senior manager of communications for the Alzheimer Society of BC, the sexual identity of people seeking help is irrelevant and everyone is welcome at the Society.

“It’s really about the support,” she says. “People find they have common experiences and struggles. We cater to everybody who needs the support.”

Nixon and Sudhues note that their sexuality has not affected the quality of care they’ve received from an often straight-biased health care system.

“Our relationship has not been a barrier in any way,” says Sudhues.

As Nixon’s caregiver, Sudhues often takes notes during doctor’s appointments and can usually remember things better than Nixon can, making him a great resource for health care practitioners.

“The doctors welcome Ken being there sort of as an interpreter,” Nixon says.

For Nixon, the progression of the disease has involved the gradual disappearance of certain skills and knowledge. For example, soon after his diagnosis he lost the ability to drive and voluntarily gave up his license in favour of his bicycle, but then lost the ability to change bicycle gears.

More recently, Nixon has been suffering from “absence attacks,” a form of epilepsy that causes him to lose awareness and stare into space.

Sudhues likens Nixon’s situation to a computer, where there’s very little available space and new information keeps getting rewritten over the same document.

“Every day, there’s just a little bit less of David than there was before,” Sudhues says. “I’ve had to stop saying, ‘But you used to know that.'”

Nixon’s dementia has brought on many life changes for the couple. After the diagnosis, the couple scaled down their lives, selling their home in the suburbs and moving downtown. They also visited their lawyer to work out a representation agreement and power of attorney.

“I think every couple should consider doing this kind of documentation,” Nixon says.

Nixon used to take care of the finances, but Sudhues has taken over that task along with the role of caregiver. They have also noted that their circle of friends has gotten smaller, with many friends finding it difficult to deal with Nixon’s dementia.

For Nixon and Sudhues, there is a degree of frustration in Nixon’s condition. Not only do they sometimes lose patience with one another, but they are disappointed that they don’t have the opportunity to fully enjoy Nixon’s retirement after all their years of hard work. Still, they are honing their coping and negotiation skills and enjoying life as it comes, taking it day by day.

Both Nixon and Sudhues can’t say enough good things about the Alzheimer Society of BC, which they say has been a great source of support and resources. They regret that other same-sex couples haven’t sought the help that they have.

“They’re missing a great opportunity for assistance and sharing,” Sudhues says.