A sidetrip like no other

Jon Haynes was diagnosed with Alzheimer’s in January 2013. He sits here with his wife, Louise, in their St. Albans home on Tuesday.

ST. ALBANS — When Jon Haynes first put on the bird mascot suit for the Bellows Free Academy-St. Albans hockey team in 1992, it wasn’t exactly glorious.

“As soon as I hit the rink, my glasses fogged up and I couldn’t see anything, and I couldn’t skate,” Jon, 70, said in an interview Tuesday in his St. Albans City home. Instead of giving up on the idea of being the Bobwhite mascot for his stepson Richard’s team, Jon grit his teeth and did it.

“I thought, ‘I think I can do this,’ and I did,” he said.

“And the bird was born,” said Louise, 67, who is Jon’s wife.

Two decades later, when Jon’s actual eyesight worsened and more signs of Alzheimer’s disease appeared, he approached his new challenge like the bird.

“If I go into a dark room I can’t see a thing – it’s like being in a coalmine,” said Jon. Because he lost most of his peripheral vision, driving safely became difficult, and Jon eventually had to stop. He started walking places instead.

“Surfaces are sometimes problematic,” Jon said. He makes it work, walking with his knees lifted high and using his small, high-intensity flashlight.

“I like the idea of being active,” said Jon.

Activity and willingness to cope, accompanied by medication, routine, help from Louise, and a newfound love for working out at Fitness Zone, have all helped Jon maintain relative normalcy two years after being diagnosed with Alzheimer’s disease.

The worst part about it, said Louise, is not knowing what lies ahead for her husband. For now, though, she and Jon forge onward.

“If Jon were to stay the way he is now … it’s not a bad life,” said Louise.

Jon’s life

In addition to being the birdman for a number of years – which he only stopped recently – Jon taught English at BFA-St. Albans for four decades and with much energy and eccentricity.

“Jon was a very popular teacher,” said Louise, who also taught at BFA.

“Teaching is the bomb,” said Jon. He read and discussed literature with his students, extensively researched it, and even took his students on field trips – places like Holcomb, Kansas, where Truman Capote’s book, “In Cold Blood,” originated.

“You can’t just learn about it, you have to learn all the stuff that’s around it,” said Jon. “We were pretty able to make things happen. [I was] anxious to show and tell you about stuff.”

Then, as Jon described it, he had an accident while snow blowing in 2009. While pushing down on the snow blower’s handles, he had a sharp pain in his backside that didn’t go away.

“That led to a real problem,” said Jon. He experienced back pain and eventually severe anxiety and often stayed in bed.

Jon and Louise – who taught foreign languages – both stopped teaching that year.

“I spent a lot of time talking and being seen by a lot of doctors to figure it out,” Jon said. He found little help, however, and stopped seeing medical specialists.

“I decided to fix it myself,” Jon said. “I got off the bed, I stopped getting worked up about what it was, and I started to see what I could do with my body.”

That’s when Jon first started going to the Fitness Zone, where he met Mike Lucier. “He had some back problems, which is what this turned out to be,” said Jon. “He had the answers. He was a real godsend.”

Lifting weights and exercising became central in Jon’s life. Down the road, the gym would be not only a physical but a mental therapy for Jon’s health challenges.

His pain gradually lessened as he worked three or four times a week, and he now has a portion of each day where he feels no pain. He lost weight and can now do physical activities such as raking leaves and shoveling snow, which he likes.

“I’ve never been in such physical shape my whole life, until now,” said Jon. “That’s made things a great deal easier.”

Alzheimer’s disease

All of Jon’s physical activity would become a helpful therapy when, following his diminishing eyesight and a new pattern of forgetfulness, Jon was diagnosed with Alzheimer’s disease at the Fletcher Allen Memory Center in January 2013.

“At first, he was so afraid that the anxiety – it produced in him some signs where he needed some help,” said Louise.

“At this point,” she added, “he’s doing very well.”

Jon spends most days busily, taking his medication, going to the gym, working around the house, walking in downtown St. Albans, balancing his checkbook or going to the bank, attending social events, and reading or watching the news.

The day always begins with putting up the American flag outside the Haynes’ home.

“I love putting the flag up and taking it down everyday,” said Jon, adding that it has special meaning for him as a U.S. Army veteran.

Louise said that John’s habits of routine and orderliness are generally helpful all day long. “He has always been a really orderly person, so he has a plan for everything,” she said. “By maintaining that practice, things like his wallet and his pocket knife, things like that, he’s been able to locate easily.”

“I guess fastidious would be an adjective,” said Jon.

While Jon’s short-term memory has become poorer recently, he said it’s manageable. “I don’t collapse over it,” said Jon. “I have a sense that I’ll be able to find [things].”

Jon does occasionally get lost when he’s out and about. “Sometimes I don’t know where I am,” he said. Fortunately, most people in town know who Jon is, and they give him a ride home or walk him back.

In addition to forgetting things, Jon has little sense of time. “It feels pretty good except if I get caught out in darkness and need to walk home,” he said.

One time, Jon said, he was at a hockey scrimmage at Collins Perley Sports & Fitness Center and went outside after the sun had set. He wanted to try walking home, he said, but couldn’t see anything.

“I had the flashlight, but I was still blinded by the lights and the sound [of cars],” Jon said. “I didn’t want to fall down.”

He made it across busy Route 104 to the Jolley store, where he was able to call Louise for a ride.

“At nighttime everything looks foreign,” said Jon. “It was a little unnerving.”

At home, Jon is fairly independent – he stayed there by himself for a week this fall while Louise visited with her daughter, Hilary, and her new grandchild.

“It was a source of anxiety but he did well,” Louise said.


Challenges and comfort


While Jon is adjusting, Louise is tackling her own challenges.


“It’s been a real learning curve,” said Louise. “I’ve never dealt with this with any parent or any elder.”


Understanding shifts in Jon’s behavior, she said, has taken some time.


“Jon has always had very strong opinions,” said Louise. “I started to see a weaker filter [lately].”


In addition, Louise said her emotional connection with her husband has changed, and is less intimate.


“It’s lonely,” she said. “There’s a closeness but a degree of separation that’s hard to breach.”


Figuring out how to help Jon without making him feel diminished, for instance, is difficult. “It’s in my nature to help,” Louise said. She now waits for Jon to ask for aid.


This happened once when, as Jon’s memory and eyesight grew worse, he asked for Louise’s aid in writing “The Flash,” a letter he wrote for the BFA-St. Albans hockey team before games.


It was strange, said Louise, to be helping Jon with syntax and grammar in his writing.


“That was a real change of roles,” she said. “Jon was always the go-to person for grammar.”

Like Jon has had to look for help, Louise has too. She began attending an Alzheimer’s support group following Jon’s initial diagnosis, though she’s since stopped going.


“Jon wasn’t changing,” Louise said. “I think he’s doing particularly well.”





Taking a sidetrip


At this point, Louise said that what bothers her most about Jon’s health is not knowing his future.


“My expectation is that he’s going to stay like this,” she said, “but of course people say that’s not how it works.”


“It can be scary,” Louise added. “I am anxious about what it would be like in five years.”


For the time being, what has been best for the Haynes couple is understanding where Jon is now, and adjusting to it.


“I first got this thing and I really got in the tank,” said Jon. “I barely could get out of bed. It took awhile to get to the right spot where I could make some progress.”


Now that he is making progress, Jon and Louise seem fairly happy with the way their life is. That doesn’t change the fact, though, that dealing with Alzheimer’s disease is difficult.


“It isn’t anything I would have chosen,” said Jon.


At the end of the interview, Jon put on a 1990s recording of the CBS News segment, “Everyone Has a Story” with Steve Hartman. Jon, who was teaching at the time, was chosen to be interviewed like all of Hartman’s other subjects: blindly choosing a location in the U.S. and then randomly pointing to a name in the phonebook.


Louise said the interview was sprung on them at an inconvenient time on a bad night in March. While it wasn’t necessarily something the Haynes’ were up for in the moment, looking back, the CBS segment, which focused on Jon’s service as the BFA mascot turned out really well.


“That’s what life’s about,” Jon told Hartman in the interview. “Sidetrips.”