The first time Brenda Bouchard thought her husband might die was after he came down with a cold.
Ken was feverish and pale, and emergency room doctors feared his virus might turn into an infection. They wanted to start him on antibiotics right away.
Brenda, then 58, had to tell physicians four times not to pursue the medication.
“The doctor kept saying, ‘It’s my job to save people,’ ” Brenda said. “I had to explain to her Ken’s wishes. He would not have wanted to live like this.”
Ken, 70 , had been suffering with Alzheimer’s disease for more than 10 years. He was reduced to the point where he was having trouble walking and speaking. There were times when Brenda wasn’t sure if he recognized her or any of his four children.
Doctors didn’t push for the medication, and Ken made it through the night. But he ended up in worse shape than when he got to the hospital.
In his last year and a half of life, Ken faced and evaded death several times, leaving his family members to try to figure out how best to make him comfortable.
“This is such a humbling experience, making decisions about somebody else’s life,” Brenda said one day while visiting Ken in hospice care. “It’s very serious business.”
For years, Ken was adamant that he would never get Alzheimer’s disease.
The Bouchards had a deep family history of Alzheimer’s: Ken’s grandfather, his mother and her seven siblings, and Ken’s two brothers all had it. But Ken did not test positive for any of the three genes associated with familial Alzheimer’s.
“He always said, ‘I’m not worried about that. They’re going to have a cure by the time I’m that age,’ ” Brenda said. “But he was probably thinking 80, not 59.”
Once diagnosed, Ken’s condition slowly declined. Brenda watched the love of her life – the “super lawyer” who settled multimillion-dollar cases in a lime-green sports jacket, who spent hours gardening in the backyard and called Home Depot his “home away from home” – forget the layout of their house, the names of former colleagues and how to use a toothbrush.
Ken knew about the importance of legal planning soon after a terminal diagnosis. He made it clear to Brenda that he didn’t want any extraordinary measures taken.
“He would always say, ‘Take me out in the backyard and shoot me,’ ” Brenda said. “He was very clear about how he felt.”
Brenda filled out the Physician’s Orders for Life Sustaining Treatment form, which details how to proceed if a life-threatening complication might emerge. She signed against tube feeding, CPR and intubation.
If Ken’s heart were to stop, if he were to stop breathing or eating, Brenda wanted him to pass peacefully.
Ken was assisted by an at-home care professional and attended adult day care and rehabilitation programs. He lived the last four years of his life at the Evolve assisted living community in Rye.
End of life
The later stages of Alzheimer’s can be particularly difficult for both the patient and caregiver. Patients lose the ability to walk or communicate and experience a general lack of appetite. Many also have difficulty swallowing, putting them at risk for inhaling food and contracting pneumonia.
In his last year living with Alzheimer’s, Ken lost 21 pounds. He had to be picked up and carried to his wheelchair, to bed and to the bathroom. Physical therapists worked with him a few times a day, stretching his legs and arms so he wouldn’t get bedsores.
“I think there’s a complete lack of understanding about Alzheimer’s,” said Dick MacNeil, whose wife, Candace, also lives at Evolve and has younger-onset Alzheimer’s. “I assumed, when I found out my wife had this, that she was going to forget who I was. I didn’t realize your body forgets how to do every single thing that it does automatically down to swallowing and breathing.”
Research is still being done on how long people diagnosed with younger-onset Alzheimer’s can live with the disease. Some experts say that dementia progresses faster in younger people; others believe patients with younger-onset can live longer.
“Because these people are younger, they tend to be physically healthier, so they can live a very long time into the late stages of the disease,” said Bradford Dickerson, a memory disorders physician at Massachusetts General Hospital.
A 2002 study by researchers at the Johns Hopkins Bloomberg School of Public Health found that the age of patients at diagnosis significantly impacts life expectancy with Alzheimer’s. Median survival times ranged from 3.4 years for people diagnosed at age 90 to 8.3 years for people diagnosed at age 65.
But most research on younger-onset Alzheimer’s is just now getting underway. Ken was a part of a study at Massachusetts General Hospital with his sister and one brother where families with a history of Alzheimer’s are tested for a genetic link to the disease.
As Brenda cared for Ken, she also had to deal with her 91-year-old mother, Cecile, who was afflicted by the same disease. The two of them had 20 hospitalizations combined. By the time Ken had progressed to the later stages of Alzheimer’s, advocating for her mother and Ken had become Brenda’s life.
Cecile was declining day by day. She still knew who Brenda was most of the time, but she believed Brenda, Ken and her all lived together at Evolve.
Ken was placed in hospice in January 2017. Palliative care professionals came in a few days a week to do things like paint patients’ nails – pink for Cecile, and clear polish for Ken.
Unable to speak with him, Brenda was always guessing of ways to make Ken feel more comfortable. Two weeks before he died, she noticed his eyes were irritated, so she brought him eye drops. She considered whether he might need a cushion for his chair after he lost weight. She made sure he was always wearing a white undershirt, like he did before he got sick.
“A lot of the times Ken will speak word salad and he’ll start talking and I don’t know what he’s trying to tell me. I don’t know if it’s a joke, if it’s ‘I love you,’ or if he’s upset about something,” she said.
“But I always say to him, ‘Don’t you worry about that. I know what you’re talking about and I took care of it – it’s all set. You don’t have to worry about a thing. I’ve got it all under control.’ ”
A few weeks before Ken died in November, Brenda had surgery on her shoulder, and her arm was still in a sling. One of the Evolve staffers pushed Ken’s wheelchair through the hallway to a small library in the building, while she wheeled her mother there.
“Bushel and a peck and a hug around the neck,” she said, giving Ken a one-armed hug.
Ken’s stiffness in his neck made it difficult for him to move his head, so he jumped when he felt Brenda touch his hand in a place he couldn’t see.
But then he softened when Brenda stood at an angle where she could look him in the eye.
“I feel like when we connect, he’s looking into my soul and I’m looking into his. I just want him to know I’m there and everything is okay,” she said.
“A person’s emotions are one of the last things to go.”
‘Time of acceptance’
The call came early on Thanksgiving morning.
Brenda was staying at her daughter Briana’s home in Boston. She had been planning to visit Ken at Evolve that night for a dinner of turkey and cranberry sauce.
When she heard the news, Brenda left the house without showering. When she got to Evolve, she found out that Ken’s blood pressure and pulse were low. His skin looked gray, and he was clammy and wet.
The staff said Ken could pass quickly. Brenda spread the word to friends, family and former colleagues. Some drove hours to say goodbye. Brenda stayed by his side the whole time.
Ken passed five days later.
“I knew it was a time of acceptance,” Brenda said. “There was nothing that could be done.”
Brenda had always known Ken was going to die. There is no cure for Alzheimer’s disease; once Ken received his diagnosis, she knew it was the beginning of the end.
But Ken’s death still came as a shock to Brenda. She felt an emptiness she couldn’t shake.
“How can it be that we know this is coming, but we’re not prepared?” she said two weeks after Ken’s death, visiting her mother at Evolve.
She sat in a room next to the center’s main dining room eating a lunch of salmon salad with her mother. Brenda’s friend Jeanine May Gallant, whom she met at Evolve and whose mother Sally also has Alzheimer’s, sat beside her.
Brenda, Ken and Cecile always used to eat together at the same table in the dining room. But she said she’ll have to find a new routine now. The funeral service, cleaning out his room at Evolve – it all seemed to blur together.
At Ken’s funeral, the room was filled with people who knew both Kens, the one before Alzheimer’s, and the one after.
There were his partners from his law firm, and former clients, and there was Ken’s old home caretaker, and the staffers from Evolve, who knew him at the very end of his life.
There were also people who knew Brenda. Since Ken’s diagnosis, Brenda has become more involved in the Alzheimer’s community, sitting on the board of the Massachusetts/New Hampshire chapter of the Alzheimer’s Association and testifying at the State House for bills related to the disease.
She’s preparing to go to the annual Alzheimer’s Association forum in Washington, D.C., this June, where she will advocate for 425 million to be added to National Institutes of Health budget for increased funding for Alzheimer’s research.
Brenda sold her and Ken’s house in Madbury, and she’s renovating a two-bedroom colonial in Portsmouth. Now 60, she is trying to reimagine her life.
“I don’t know who I am if I’m not somebody’s wife, or somebody’s caretaker,” she said. “I’m not exactly sure where I’ll go from here.”
(Leah Willingham can be reached at 369-3322, firstname.lastname@example.org or on Twitter @LeahMWillingham.)