Andy's Journey: The Struggles Through ALS | Part III

Andy's Journey: The Struggles Through ALS | Part III: Andy's `dream team'

Andy Leclaire's life prolonged, hospice became like family

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BRATTLEBORO — Kathleen Leclaire named them the "dream team" — the hospice workers who cared for her husband, Andy.

Medicare pays for hospice, provided the patient has been deemed terminally ill — a prognosis of six months or less to live — by two physicians, according TO Dr. John M Saroyan. Saroyan is the medical director for Vermont and New Hampshire for BAYADA Home Health Care, which has an office in Brattleboro.

But Andy Leclaire fought through that six months and then he fought some more. Seven months. Eight months. Nine. Ten 

Andy Leclaire, of Brattleboro, diagnosed with the fatal disease Amyotrophic Lateral Sclerosis, or ALS, in Feb. 2014, lived 11 months longer than doctors expected.

The "dream team" cared for him for 17 months.

They became like family.

PROVIDING COMFORT

The BAYADA Home Health Care team that started seeing Leclaire on March 2, 2015, included licensed nurses, social workers, physicians, spiritual counselors, community volunteers, program coordinators, directors and more.

Medicare kept paying for the hospice care, but Saroyan had to detail Andy's decline over the 17 months: loss of voice strength, increased sleeping, increased fatigue, loss of the ability to cough, a decreased appetite, loss of the ability to participate in care ...

Hospice workers help terminally ill patients and their families. But it's the type of relationship that develops over the months leading up to death that creates a rich meaningful experience at the end of life. Hospice care workers aim to make the last stages of life as comfortable as possible.

For Kathleen Leclaire, one of those moments was when Kathy Krasnow, a registered nurse with BAYADA, helped modify silverware in a way that made it easier for Andy to pick up his food with his limited mobility.

"Hospice works with living people," said Saroyan. "We have the privilege of getting to know them and sometimes getting attached to them."

Beverly Mosher, a licensed nursing assistant with BAYADA, visited Andy nearly every day at 9 a.m. Her smile helped him get ready for the day.

Mosher and Kathleen washed him, rubbed lotion on his skin, combed his hair, and dressed him.

"They're the sweetest family in the world; I let him call the shots," said Mosher.

Andy and Kathleen called Beverly Mosher and Kathy Krasnow the key people on the "dream team."

Initially, Krasnow visited three days a week, but as the disease progressed, she began to visit five times a week.

Krasnow and Mosher understood Andy's humor. They knew they could joke with him.

"They fit right in with our family," Kathleen said. "Andy could pick on them and they'd love it. And they would pick right back and he'd love it.

"When Bev and Kathy came to our house at the same time, it was like a family reunion. We'd say [to Andy], `Aren't you special, having three girls taking care of you?'"

CARE DEMYSTIFIED

What hospice workers do is often misunderstood.

"People may think that a hospice medical director may only do one thing, assign terminal illness and come up with morphine doses at end of life," said Saroyan. "That's a very narrow definition of my expertise as a hospice and palliative medicine physician."

Emma Gardner, the medical social worker for BAYADA, agreed there are misperceptions about hospice care.

People hear the term "social worker," Gardner said, and "they think, `They are going to do psychology on me," or that "They are going to want to talk about my family history.'"

Gardner does evaluate whether patients and family members are in denial, angry, upset, scared or accepting of their upcoming death.

"I know you're hoping it doesn't come soon, but let's be ready," Gardner tells her clients.

"First and foremost, I provide emotional support when they come on to hospice at all different levels," she said. "I help coordinate care."

At Brattleboro Area Hospice, Patty Dunn, the program coordinator, organizes the community volunteers who visit terminally ill patients.

Community volunteers are the "eyes and ears" of the team, and they spell caregiving family members so they can do what they need to do.

"They can notice and observe things just by virtue of the time that they spend with the client," said Dunn. "They are really representatives of the community."

According to Saroyan, each terminal illness brings its own challenges, because of the unexpected in the day to day.

"One has to talk about things while a person with ALS still has a voice," Saroyan said. "And when discussions need to be had when they don't have a voice, questioning needs to be simple enough for them to be able to respond in a yes/no fashion by using their eyes or squeezing a hand."

`MY HERO'

Nurse Kathy Krasnow talked about the things Andy taught her: "You don't have to be negative, you can be positive. Even in his extreme situation, he found positive things, and was always looking on the bright side."

Saroyan also learned from Andy what it's like to have ALS within a family affected by it on such a large scale. In Andy's case, it's hereditary. At least 30 of Andy's relatives have died from the disease since the early 1900s. Saroyan also took away important lessons about empowering patient choice.

"It's a highly individualized matter, it's highly personal, as well as professional in terms of what our own selves feel at the time of the person's death," said Saroyan.

"It's important to remember, when the question comes at us, the greatest time of sadness might come when the person is still alive. The greatest time of sadness might come five years later when you are driving down their road and remember them."

Krasnow calls Andy "my hero."

"He is the only person in my life I can say is my true hero," said Krasnow, "because he had so much strength and he taught me something every day. It's just amazing the strength that man had."


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