Against the Dying Light


Louise's Story

Death was a relief.

Louise knows people have a hard time saying that. But it is the unspoken feeling that hangs in a room when two or more caregivers of Alzheimer's patients gather. We're not wired to admit to others we think that way. But when Gord's journey came to an end, after seven years, it was a relief - for Louise, for her family, for friends and colleagues and, most importantly, for Gord.

Finally, it was over.

Gord, a University of Guelph professor, stopped eating in mid-May. Louise, a Western Biology professor, knew it wouldn't be much longer. On June 1, she remained at his long-term care bedside until late evening. After a call from her daughter checking on her whereabouts, Louise headed home for the night. She had been there only a few hours when the call came. Gord had died.

Still only months removed from that day, people ask if she is grieving terribly. She smiles politely and wonders how you explain to them you have been grieving for seven years.

There is a whole side of Alzheimer's nobody wants to talk about. Louise saw it, lived it. And is it ugly. But she has embraced telling her family's story to the world. "Until we talk about that side, people who are faced with a diagnosis, or their caregivers, seem to think 'Oh, well, they'll just start to forget.' No. It is way more," she said.

It has been hard not to let this journey define her. However, she developed inner strengths she didn't know she had. It has been empowering in many ways, enlightening in others, and profoundly sad. To see a brilliant mind in his prime chiseled down slowly - every day a loss - was the most painful thing she has ever endured.

Soon after Gord's death, the family held a celebration of life at the Jet Aircraft Museum in London. It was a perfect place.

Born in Saskatoon, Gord spent his early years in London while his father attended Western. The family eventually settled in Lethbridge, Alta., where Gord was a member of the local Air Cadet squadron. After earning his Honours BSc in Zoology in 1968 from Western, he spent four years in the Canadian Air Force.

Those who gathered for his celebration shared numerous stories, tears and laughs. Louise is still proud of both their girls, who wanted to take part. It was difficult. But how could it not be? Not only had they just lost their Dad, but they had been losing him for some time, during their most formative years. Emily, 21, stood up and told stories about her father. Annie, 16, spoke a bit, but wanted to play her ukulele and sing. Mom knew she could get through it. These kids loved theatre; performance offered them solace. And their Dad did so love watching them on stage - what harm in one more performance for him? Can you imagine the tears when Annie strummed and sang I Will Follow You Into the Dark?

Western Alzheimer's research team

The Research Team

We work across the spectrum of dementias – from its roots at the cellular level to inevitable ending at the bedside, from patient behaviour to caregiver support, from looking for subtle early signs to asking big questions about the end. We combine world-class researchers, leading-edged technology and unbounded optimism to arrest the disease in the future, while simultaneously easing the burden on those in the present.

Part 2: Never Forget

"It's not the person; it's the disease. It's not the person; it's the disease. It's not the person; it's the disease."

Some of the things she saw she'll never forget. You repeat a mantra in Alzheimer's caregiver classes: It's not the person; it's the disease. It's not the person; it's the disease. It's not the person; it's the disease. But that is hard to keep in mind because there they are - the person you have known for nearly a lifetime, right in front of you, doing things you could not imagine them doing.

Louise kept Gord as socially active for as long as possible. Often he would just sit among the crowd. But he was out. Occasionally, his manners went out the window and created awkward moments - that was part of it.

Then isolation came. Friends disappeared. Louise knows it was fear of what Gord might do. Or fear of seeing a man their age struggling with the disease. But she is still disappointed.

Today, Louise credits the staff of Harris House and McGarrell Place for the kind, compassionate care they provided for Gord. She also recognizes the support of the Aging Brain Clinic at Parkwood Institute and the Alzheimer Society of London & Middlesex. That village it takes to raise a child also helps a lot at life's end.

In January 2013, Gord moved into assisted living. Louise could no longer manage. The disease progressed. His behaviour became more and more of an issue. He wandered. He became confused. Even faced a bout or two of violence. No idea why. Strange damn disease.

In July 2013, Gord moved into long-term care. He was unusual there - young, no medications, otherwise healthy. Louise visited daily. The Girls had trouble seeing him in that state - they didn't know if that person in the chair was their Dad or not. Mom gave them permission not to. It was so hard to explain to adults. What do you say to kids?

Gord and his family

Dinner in New York

Gord always knew Louise. He may not have said 'Louise' or 'my wife.' But he knew they were connected. He hugged. Took her hand. Relaxed as much as he could. She made the handyman in her life what she called a "toddler board" to tinker with - chains to slide, locks to click, plugs to connect, doors to open and close. He always loved tinkering. That board gave him joy now.

She doesn't remember the last fully coherent conversation they had. Maybe that is best. She does remember little things, moments in time. But life moved too quickly after the diagnosis.

She cannot help but think they could have known sooner. Maybe had a bit more time to make memories. When Gord's medical records were transferred from his family doctor to the Aging Brain Clinic, Louise discovered there were some signs of atrophy years earlier in that CAT scan after the car crash. Part of Louise wonders if he hid that information because he didn't want her to worry - or he didn't want to face what was to come.

Part 3: What Are We Going to Tell the Girls?

What are we going to tell The Girls?

Their daughters were 14 and 9 when their father was diagnosed. Gord and Louise had stopped for coffee on the way back from the doctor where they had received the news. Louise was shaking - she needed a break. And Gord was done driving. He spoke first.

"What do you think? This isn't good."

"No, you're right. This isn't good."

"Do you think it's Alzheimer's?"

"Well, the doctor didn't say, but I am guessing so. We'll have to go to the family doctor for a diagnosis."

Gord paused. Louise remembers that moment - remembers his look - vividly. "This is going to be so hard for you, Emily and Annie. You need to do the right things, make the right decisions to move forward in life."

To this day, Louise thanks him for those words. It was the kindest, most generous thing he had ever done - and to have done it facing his darkest hour is incomprehensible. When it came time to make tough decisions - how to manage the family, when to move him into care - there was no guilt. Louise knew she had his permission.

Both knew what was coming. It wouldn't be pretty. The symptoms of Alzheimer's disease worsen over time, although the rate at which the disease progresses varies. On average, a person with Alzheimer's lives four to eight years after diagnosis, but can live as long as 20 years, depending on other factors.

Once diagnosed, a person may function independently. He or she may still drive, work and be part of social activities. Despite this, the person may feel as if he or she is having memory lapses, such as forgetting familiar words or the location of everyday objects.

Looking back, Gord ticked off almost all the common difficulties signaling Alzheimer's:

  • Problems coming up with the right word or name;
  • Trouble remembering names when introduced to new people;
  • Challenges performing tasks in social or work settings;
  • Forgetting material that one has just read; or
  • Increasing trouble with planning or organizing.

Gord and his family

Family vacation

Gord didn't want The Girls to know right away. A pre-teen and teen were already dealing with a lot; Dad didn't want to further burden them. "When the time comes, I'll tell them," he said. Problem was, when the time came, he couldn't tell them.

Soon after the diagnosis, he stepped away from work. It was like a weight had been lifted. A little of his "old self" surfaced in that moment. Relief. He didn't even want to clean out his office. Louise headed in and took care of it for him. She discovered an office impeccably ordered. An organized man already, this was next level - even the paper clips were lined up as straight as soldiers during inspection.

"Jeez, Gord, your office was really organized."

"Doing that was easier than working."

Ever the scientist, Gord remained so until the end. He embraced clinical trials, even left his brain behind for others to understand.

Louise quietly let those closest to him know. Family. Friends. His grad students. His colleagues at the Great Lakes Fisheries Commission. She didn't want his legacy to be seen through the lens of his last few years.

Louise cared for Gord at home, along with working and raising the family. It was all so much.

If your family is starting this journey, Louise wants you to understand one thing - you cannot do it alone. The journey can be lonely, exhausting. People think "I have to be the one. I promised them I would take care of them." Societal pressure will say you need to keep the patient at home for as long as possible - but for whom, Louise asks. Guilt and pride get in the way of everything - especially logic.

As soon as you get that diagnosis, reach out for help. If you don't have family, find other ways. It's too big for anyone, Louise stresses.

When Gord was first diagnosed, the first question out of people's mouth was always, "Does he know who you are?" Louise laughs at that today. If only that was the only thing he didn't know.

"This is going to be so hard for you, Emily and Annie. You need to do the right things, make the right decisions to move forward in life."

Part 4: Catch A Flight

In 2008, Gord and Louise were heading to the airport to catch a flight. Gord had forgotten his passport in his office. As the couple headed to Guelph to pick it up, their car sideswiped a FedEx truck just down the street from their London home. Louise has no memory of the incident to this day. Gord, who was driving at the time of the crash, was shaken - he had no idea why he would have made that turn, at that time, in that way. It was a complete lack of judgment that came from nowhere.

Always mindful his mother had dementia, he visited his family doctor. Luckily, he told Louise, the doctor said his memory tests were fine, as was a CAT scan they performed on him.

Beyond the crash, there were other incidents. Today, Louise seamlessly links them together to paint the picture of a man in slow decline. But, in the moment, nobody was connecting them. Why would they? With Gord only in his early 60s, Louise wasn't thinking Alzheimer's. That was an old-person's disease. He was a man of the mind, still active physically, socially, intellectually.

But today, she can list off the moments.

First thing he lost was words. Couldn't find them. It was maddening - "you know, the guy who flies the plane. You know what he's called."

Louise remembers hanging shelves in their home and can still see Gord, always a handy guy, holding an anchor and a screw, unable to process what each one did. "These aren't going to work. We can't use these," he told her. He was trying to put the anchor into the screw. She found it "weird."

Then work started stressing him out. Every spring, for 30 years, Gord took his lab team into the field to work. But one spring, he was anxious about it. "This is all so complicated," he told Louise. He started spending hours and hours labouring over lectures he had given for years - ones where a quick glance at his yellowing notes would have more than sufficed. He canceled lectures for odd reasons, like a conflicting appointment he made to put his snow tires on.

Gord was not the absent-minded professor type. This was all so not him.

His department chair began to notice, as well. She was kind and compassionate about raising the issues, but as student complaints about Gord's clarity and repetitiveness mounted, she finally brought the issue up. "My chair is concerned about my driving. She wants me to go see a doctor because of my driving," he finally told Louise.

The couple went to the workplace occupational safety doctor - his chair had sent along a list of concerns. They were raw, honest. Gord read them. "Yeah. A bit harsh, but probably true," he said. He was flat. No emotion. This reaction didn't surprise Louise. Always a fighter for his point of view, Gord had grown more and more apathetic. And then the appointment progressed - and the couple's life changed forever.

Gord couldn't spell 'world' backwards.

Or subtract seven from 100.

Or draw a clock face that read 10 minutes 'til 2.

That clock face. It still gets Louise. That was the moment it all became clear.

"Oh my god."

Part 5: Nobody Was Paying Attention

Nobody was paying attention when they met. Louise Milligan was a McMaster University undergrad working in a Biology lab. She was young, nervous and afraid to make a mistake. She worked on a project alongside David Gordon McDonald - known to most as Gord - who was a postdoctoral scholar in that same lab.

When they met, Gord had already spent four years in the Canadian Air Force, then earned his masters and PhD in Biology from the University of Calgary. He was 13 years older than Louise. But that didn't matter - she was drawn to his sense of humour, his kindness. Together, they were the smartest people in most rooms.

Gord and his family

Gord and Louise, New York City

Gord was eventually hired by the Department of Biology at McMaster as an Assistant Professor in 1980. By then, Louise was a PhD student. They continued dating and married in 1983, settling first in Dundas, Ont., then Paris, Ont., and, finally, in London, Ont., in 2002.

As a professor and a student working in the same lab, they were discreet with their relationship, even after they married. So much so, they had been married two or three years before the professor in the office next to Gord's asked if the two of them were "dating or something."

Their careers grew, almost in parallel.

In 2002, Gord left McMaster to take up a position at the University of Guelph, as professor, in the Partnership for Ecosystem Research and Management program, joint with the Great Lakes Fisheries Commission. He focused his energies on developing lamprey management strategies in an effort to protect the Great Lakes fisheries. He was passionate about teaching and research. He was happiest when tinkering in the lab, helping students design and build various pieces of equipment to measure everything from lamprey swimming behaviour to the blood chemistry of blue mussels.

In 1988, Louise joined the former department of Zoology (now Biology) at Western. She worked with and trained dozens of talented undergraduate students and taught courses ranging from first-year Biology, to second-year Animal Physiology, to fourth-year seminars, as well as Political Biology, Marine Biology field courses and thesis courses. Since 2006, she has taken on more of an administrative role as Associate Dean (Administration) for the Faculty of Science. She enjoys that role as it offers opportunities to engage with the many talented colleagues in Science and across the university.

In life, as in work, Louise says she lucked out. The couple had a lot of common interests. When they went on joint sabbatical, they spent 24/7 together. It would not be every couple's idea of perfection. But for Gord and Louise, it was. They worked all day in the lab together, then went back to their apartment in the evening where they bounced ideas or untangled problems. They traveled. They lived life.

It was 14 years before they had their first child, Emily. Gord was a father at 50. He was not sure about fatherhood at such an advanced age. But he loved every minute. A few years later, they had a second daughter, Annie.

He took great pleasure in watching The Girls' soccer games, Original Kids Theatre performances and engaging them in lively discussions around the dinner table. Everything was fair game starting when The Girls were little - reviewing what happened in everyone's day, then advancing to bigger issues as they matured, like books, movies, politics, and school, especially their science classes where Gord couldn't help himself from correcting their teachers. And bedtime stories - that was Gord's time to perform.

By such wonderful chance, Louise and Gord had found a true partnership in work and life.

A lifetime of memories awaited them.

"Louise's Story" written by Jason Winders
Director, Editorial Services in Communications and Public Affairs at Western.