As Alzheimer’s steals her mind, would this be this couple’s last summer together?

Lyndon Blackbird had an envelope in his hand, an eye on the clock and 20 minutes to get to the post office and back before Evelyn started to panic. He paused in the doorway of their Toronto apartment and watched as a support worker guided his wife toward the bathroom for her daily shower.

Tall and strong, Evelyn Davis had been the babe among nerds in their college computer programming class 30 years ago, and she still had that shiny dark hair and those steely brown eyes. But now she could hardly walk without a guiding hand, and she struggled to string words into a complete sentence. Her eyes had lost their spark, and she couldn’t remember her own wedding. Evelyn was 54, and in the last five years, Alzheimer’s disease had stolen much of who she was.

Lyndon had been up all night trying to calm his wife, and now he hoped this brief errand wouldn’t cost them another good day.

“I’ll be right back, OK Evelyn?” Lyndon said.

“OK,” she said softly, and he slipped out the door.

Under the bright sun, Lyndon took a deep breath. It was 12:30 on a Tuesday afternoon in July, the first week of a two-month leave of absence from his job at a bank, and the beginning of what he believed would be his last summer with his wife. Lyndon, 50, had taken the time off, without pay, because Evelyn had begun to deteriorate quickly and he feared she would soon forget him. He wanted to do everything he could to make this a happy time for her.

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Lyndon crossed the street to Food Basics, where he bought six bottles of Evelyn’s favourite honey on sale — his final purchase in a months-long endeavour to stockpile groceries while he still had a paycheque. Then he headed to the post office to mail the package he had been working on for more than a year: an application for long-term care. It made him sick to think about moving his wife into a nursing home but Lyndon knew there would soon be no other choice.

At a time when Evelyn couldn’t be left alone for even a minute, she qualified for only seven and a half hours of government-paid care per week through the local Community Care Access Centre, the provincial agency that oversees home and community care. Lyndon had to cobble together alternative arrangements for the other 30 hours in his work week. In one way, he had been fortunate: his employer had granted him a flexible schedule as the summer approached. But Lyndon wasn’t sure what he would do when his leave ended in September. He certainly couldn’t afford private care.

Keeping Evelyn at home for as long as possible had been Lyndon’s focus since Evelyn was diagnosed in 2012. It was a goal that mirrored the province of Ontario’s own approach to caring for an aging population with chronic health conditions, which is to shift the delivery of health care out of hospitals and institutions, and into homes and communities. It is seen as a win-win: patients often wish to remain at home, and it’s easier on the public purse.

But the savings come at a high personal cost to unpaid caregivers, left to shoulder the psychological and financial burden, and navigate a fragmented health system with inadequate community supports.

Lyndon had heard stories from the people in his Alzheimer Society support group about caregiver burnout and emergency room visits, and he was determined not to become a cautionary tale. “I don’t want a crisis situation,” he said often, repeating it like a mantra. Lyndon had visited five long-term-care homes in Toronto, and he knew the wait times ranged from a couple of months to a couple of years. He knew it was a strong possibility that a call would come before they were ready, or that he would reach a breaking point before a spot became available.

As he entered the post office, Lyndon wondered whether he was doing the right thing. “Once it’s gone,” he said, “the timeline is out of my hands.”

But he didn’t have time to overthink it, so he handed the letter to the mailwoman and headed home.

Back at the apartment, Evelyn was freshly showered and sitting on the couch with Vicky, the bubbly support worker who came four days a week to make lunch and help her wash. As Vicky said goodbye, Evelyn appeared to be in good spirits. Relieved, Lyndon settled in beside her.

As he turned the TV to Evelyn’s favourite classic movie station, Lyndon was feeling optimistic, thinking about what he could do to keep Evelyn busy over the summer. A family gathering would be nice, he thought. A visit from her brother in Oakville, her sister in Iroquois Falls, her twin nieces.

“Would you like that Evelyn?” Lyndon asked.

She blinked twice. “OK,” she said. Evelyn didn’t speak much unless she became excited or upset.

Lyndon walked across the room to his laptop, which sat on the dining room table he used as a command centre for managing Evelyn’s health. It was covered in a mess of forms, pamphlets and guidelines, including a 400-page book on long-term care with a cover that featured smiling grey-haired ladies in an exercise class.

Lyndon had been out of sight for 90 seconds when Evelyn’s blank stare began to crumble. She rose, shakily, from the sofa. She scanned the living room. Hearing her move, Lyndon sprang from his seat. “I’m right here, Evelyn,” he said. But it was too late. Shaking, Evelyn erupted, and words began to tumble out of her mouth.

“W-Why ... ” Evelyn said. “Every time you are here, you go somewhere else. You ... can’t even stick to something,” she sputtered. “You didn’t tell me ... anything at all.”

“I was right here Evelyn, writing an email about getting your family to come,” Lyndon said.

“You’ve been gone all the whole day!” she roared. “You just decide what you want and that’s what you want to do. Every f---ing five seconds you’re gone.” She paced unsteadily around the small living room. Lyndon kept close.

“I’m not gone anywhere,” Lyndon said.

Three weeks earlier, Lyndon had gone to Walpole Island, where he grew up, to spend a night with his mother. Evelyn’s brother, Craig, stayed with her during the 24-hour absence. It had been Lyndon’s first night of reprieve in months — not worth it, Lyndon said later, because Evelyn had been upset ever since.

“All you times you a—holes, you always just go,” Evelyn continued. You don’t talk to me. Because I’m sick — is that what you want?”

“No,” Lyndon said. “I wish you weren’t sick, Evelyn.”

“Well you didn’t do anything about it!”

“I wish I could.”

“I wanna jump off a cliff,” Evelyn said.

As she sobbed, Lyndon handed her a tissue. When she couldn’t manage the tissue, Lyndon wiped her nose. When her hair fell into her face, Lyndon tucked it behind her ears.

“You don’t take me anywhere,” Evelyn continued. “You don’t care about me. There’s nothing, nothing, nothing!”

“Remember, I told you my auntie died, and I had to go down there,” he said.

“You ran out so fast! I couldn’t even say a word to you!”

“You’re right,” Lyndon said. “Everything you’re saying is right. That’s why we’re not gonna do that again.”

Exhausted, Evelyn sank back into the sofa. Her hair was tangled, her eyes raw. Lyndon placed his hand on her knee. They sat through a few quiet minutes. Then Lyndon saw an opportunity.

Pointing at the TV, he said: “This is Kurt Russell and Goldie Hawn, Overboard. Remember that one?”

Silence.

“This is when he starts to like her,” Lyndon said.

“Oh,” Evelyn said, softening. She continued to sniffle and whimper. Gently, Lyndon removed her glasses and wiped the tear stains away, then slid them back on.

“I think they’re gonna fall in love now, Evelyn,” Lyndon observed.

“Of course,” she said.

Six weeks after their June 2011 wedding, Lyndon returned from work to find Evelyn slumped on the couch, drooling and disoriented.

“Evelyn?” he said, worried, and she snapped out of the strange state she’d been in. But later that night she became hysterical, sobbing and telling Lyndon she wanted to die.

In the 25 years they had known each other, this was the worst he had seen her depression. Lyndon and Evelyn had met in 1986 at Lambton College in Sarnia, where they both studied computer programming. They bonded over a mutual love for fantasy games – Risk, Magic, Dungeons & Dragons – and were friends long before they became a couple.

After college, they lived in Toronto as roommates for a decade. Evelyn worked as an analyst for a data exchange company. Lyndon worked as a programmer and IT consultant. They got to know each other’s families and life stories. Evelyn was born in the spring of 1961 in Sudbury, Ont., the youngest child of an electrician and homemaker. Her family later moved to Sarnia, where they lived in a comfortable home on the edge of a forest that was the neighbourhood playground.

Lyndon grew up on Walpole Island First Nation reserve, where he lived with his mom, stepdad and a house full of siblings. He was the oldest child, the responsible one. He was the only kid in his graduating class to go to university, though he later switched to college. No regrets, because that’s where he met Evelyn.

In 2001, Lyndon moved to Australia for a contract job. A visit from Evelyn toward the end of his stay turned romantic, and after returning to Toronto they became a couple. They later separated for a few years — Lyndon wanted children, Evelyn did not — but remained close and eventually reunited.

Lyndon proposed in 2010, and Evelyn accepted. “We just couldn’t see any other way that our lives were going to go, other than being together,” he said. They were married in a small ceremony at Toronto city hall. To surprise Lyndon, she wore a red dress — his favourite colour.

It was a happy time, and that’s why Lyndon was stunned to witness Evelyn’s meltdown a few weeks later. Lyndon knew she had been on anti-depressants since the 1990s, and when he looked for the pills he discovered she hadn’t been taking them regularly for months. She appeared to be going through withdrawal.

After a series of hospital visits, a psychiatrist with a hunch about why Evelyn stopped her medication ordered memory tests, which revealed cognitive impairment. Strange things that had happened in recent years began to make sense. Evelyn had become lost on the way to job interviews. She had forgotten birthdays, baby showers, her brother’s wedding date. Further tests were ordered.

The diagnosis came on a bitterly cold day in February 2012, and it was as they had feared: early-onset Alzheimer’s disease. Likely hereditary, though the family hasn’t investigated.

Afterward, they sat in Lyndon’s car as snow fell over the parking lot. He normally didn’t allow anyone to smoke in the vehicle, but on that day he told Evelyn to go right ahead, and she fired up a cigarette. “At least I’m not going crazy,” she said. “Can we go to the bar?”

The diagnosis meant Evelyn couldn’t work and Lyndon was now their sole provider. Money was tight. Hopes for the future evaporated. They wouldn’t get to buy a house or adopt a child or travel. Lyndon signed up for a class with the Alzheimer Society, which helped him prepare for what was to come. He thought everything would be OK, as long as they had a plan.

In the early days, Evelyn spent much of her time at home sleeping while Lyndon worked. Lyndon made a budget and began to chip away at his swelling to-do list.

Later, when Evelyn became eligible to receive home care, Lyndon filled out a workbook to help those assisting her. “Ensure TV is turned to Turner Classic Movies,” he wrote, filling in the blanks. Clothes: “Needs help with bra, needs clothes handed in order: 1) panties 2) socks 3) bra 4) deodorant, baby powder 5) blouse 6) jeans.” On stairs, assistance needed? “Definitely.” Does the person wander? “Twice.” Registered with Safely Home? “Yes.” Is she able to read? “Not anymore.”

With every ability Evelyn lost, Lyndon gained a new responsibility. He took over the cooking, shopping and cleaning. He paid all the bills. He did all the research and paperwork necessary to manage her illness, while ignoring his own health. Panic attacks and drinking led to a seizure. Now he couldn’t drive anymore, and they had to take taxis everywhere.

In early 2014, he and Evelyn started visiting long-term-care homes, just to see what they were like. Later that year, Evelyn fell and broke her glasses. Then in January she had a seizure, and Lyndon realized she could no longer be left alone. By March this year, cognitive tests showed that her dementia had plummeted to the severe stage.

Lyndon wanted to keep a record of his final summer with Evelyn, so he shared his thoughts in a journal, as well as Facebook posts, emails and conversations.

July 13

Evelyn and I went to our local pub. After we sat down, she said, “It’s so good to see you again. What have you been up to? It’s been such a long time.” Once, I would have been taken aback. Not anymore. She was happy, so I said, “I’m taking a leave of absence from work.” I didn’t want to upset her, so I went into her world.

July 15

It’s been a busy day for Evelyn. We slept until noon. Then, I got up to straighten the place up and get her changed since her physiotherapist was coming at 1 p.m. She took Evelyn for a walk with some sitting shoulder and leg stretching exercises for 45 minutes. Evelyn was tired but happy when she came back in. Then, her girlfriend, Elaine, came over with a teddy bear poodle for some pet therapy and to dye Evelyn’s hair. Now, her PSW, Vicki is here to make her lunch and get her showered after her hair is done cooking. I can hear them all laughing and having a great time.

July 21

One thing Evelyn still enjoys is watching baseball. The Toronto Blue Jays are her favourite team. So, we’ve been watching baseball almost every day. We even watched the All-Star game and the Home Run Derby. Although she’s forgotten the rules, I don’t mind providing a commentary.

Aug.4

It’s 6:15 a.m. I can’t fall asleep until I know she’s sleeping because she has (in the past) gotten up, wandered around the apartment and fallen. This is a cycle where I’ll just crash exhausted in a couple of days, then she’ll either be screaming around the place looking for me, and I won’t hear anything, and that’s the times that she’s fallen. I really need to know how long I will have to keep this up. Right now, there’s no end in sight.

Aug. 6

Up at 4 a.m. It’s all good. It’s not all doom and gloom. Although there’s periods of problems, most days are pretty mellow as I adapt . . . . Evelyn was tired as she got up at 11 a.m. She’s been in pretty good spirits the past couple of days.

Aug. 10

Learning to groom my beautiful wife ... I have learned about waxing, and which foundation and lipstick that Evelyn prefers. In the summer of 2013, I noticed that Evelyn was applying her makeup many times a day. She kept forgetting that she had applied it. Eventually, I learned that all the applications were drying up her skin. I learned that she had to wash her face every night to remove the makeup. Her beautician would teach me how to apply the foundation and lipstick on Evelyn. Here, I learned about wedges and circular sponges; patting, dabbing and brushing on the foundation; and massaging the cleansing lotions onto her face.

Aug. 25

I know there comes a point, and it’s coming, when I’m not going to be able to take care of her. And I feel really bad about that, but it’s gotta be done. It’s her safety that’s driving everything now. I know I’ll feel bad about it the day of, too, when she’s screaming at me ... She’s been saying she doesn’t want to go. She knows she’s going somewhere. It’s gonna be tough ...

One morning while Evelyn was asleep, Lyndon sat on the couch in a weary daze.

It was late August, which meant he would be returning to work soon. The tight feeling in his chest that had eased over the summer was now settling back in. Earlier in the week he had broken down in tears in front of Evelyn and her support worker.

Lyndon had expected to know by now where Evelyn stood on the waiting lists for long-term care, but there had been problems. The CCAC had accidentally shredded some of his paperwork, and Evelyn’s medical assessments needed updating.

He was disappointed that he couldn’t use the summer to create a long-term plan. Instead he had worked out another temporary arrangement. He would spend mornings in the office and afternoons working from home. He would use a generous chunk of home-care hours he had received for participating in a study on caregivers to cover his office time. That and vacation days, he hoped, would carry them through the fall.

A knock on the door interrupted his thoughts and in walked Vicky, who got Evelyn out of bed and guided her to the living room for her morning coffee, in a no-spill thermos. Evelyn had slept late after waking overnight in a panic.

As Vicky prepared Evelyn’s breakfast, Lyndon sorted through paperwork. He was worried about money; he had gone two months without a paycheque and they were dipping into overdraft. The out-of-pocket cost for long-term care would be roughly $2,300 per month, and Evelyn’s disability pension would cover only half.

“We have her savings,” Lyndon said. “After a few years, there won’t be any savings.” If he had to hire a private worker to bridge the gap between home and long-term care, the money would dry up even faster.

Whenever Lyndon spoke about his life, the stories he told were about Evelyn’s challenges and small victories, and the things he did to make her life easier. He didn’t talk about the panic attacks he’d had when Evelyn’s disability pension took 18 months to get approved and they nearly ran out of money. He didn’t mention that he couldn’t take on big projects at his job anymore, or that the work-from-home arrangement didn’t come without guilt and sacrifice. That he missed out on career opportunities. That he had been heartbroken to step down from his volunteer role as a director with the Native Canadian Centre of Toronto.

“He does things because he should, not because he has to,” said Craig Davis, Evelyn’s brother.

“He’s such a sweet man,” a teary-eyed taxi driver said one day as Lyndon helped Evelyn out of the car.

Lyndon didn’t know it yet, but things would change quickly once he returned to work after the summer. Evelyn’s weekly support hours would get bumped up to 17. Her uncle and brother would arrange for Lyndon to meet a private consultant who helps families navigate Ontario’s home and community-care system. Lyndon would begin to realize that his hope to keep Evelyn with him for another year was probably unrealistic, given the rate of her decline. He would finally get the long-term-care application processed and receive the wait times for the homes they had chosen: six months, 16 months and four and a half years. He would learn about steps he could take to speed things up in a crisis.

But for now, as the summer came to an end, he wanted to hold on a little longer.

On the morning of his first day back to work, Lyndon dressed in the slacks and collared shirt he hadn’t worn in months and walked into Evelyn’s room. She was awake when he sat on the edge of her bed; she lay in a tangle of blankets, eyes open. He told her the cat had been staring at her while she slept, and she looked over at the cat and smiled. He fed her a muffin and helped her take sips of water. Then he said that he had to go to work now, but that someone would be here to stay with her and he’d be back as soon as he could.

“OK,” she said.

“I love you,” he said.

“OK,” Evelyn said again.

As he leaned over the bed to kiss her goodbye, Evelyn lifted her head from the pillow to meet him halfway.

Lyndon didn’t want to say goodbye. The guilt would weigh on him as summer turned to fall and their time together grew shorter. “Have I done all I can?” he’d ask himself. “What will life be like without her?” But soon Lyndon would begin to accept that Evelyn would be safer in a nursing home, and he would decide, finally, that he was as ready as he ever would be to let her go.