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

Andy's Journey: The Struggles Through ALS | Part IV: 'He will fight this to the end'

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BRATTLEBORO — On Monday, Aug. 22, 2016, Andy Leclaire's breathing machine beeped.

The beeps echoed throughout the house. The noises signaled he wasn't getting enough oxygen.

Nearly 17 months earlier, Andy had been diagnosed with a hereditary form of amyotrophic lateral sclerosis, or ALS.

Andy fought it longer than anyone expected, but the disease progressively did what it was expected to do: It robbed Andy of the use of his nerves and muscles, taking his ability to walk, and those associated with breathing, even with the assistance of a machine.

The family gathered to say their goodbyes.

Months before, Andy's wife Kathleen had moved a bed into the living room so she could be closer to him.

Now that the family had gathered, their grandchildren sat on that bed, and Andy and Kathleen's children sat on the couch.

Throughout the day, Andy slipped in and out of consciousness, and the breathing machine continued to beep.

Tears in her eyes, Kathleen stood beside Andy.

"He makes me happy," she said.

Kathleen asked for the machine's beeps to be turned off. Hospice workers and family members tried adjusting the volume. But the beeping continued.

The family called for the priest.

Finally, the hospice staff in the room were able to turn off the beeping. They examined Andy's breathing mask. It had become loose.

They changed the mask, and Andy's vital signs started to normalize.

But the final week of Andy's battle with ALS had begun.

NINE MONTHS EARLIER

It was Dec. 8, 2015, about 10 months after his diagnosis, and Andy was at the point he could no longer move his legs. Andy was alert, however. ALS doesn't affect cognitive abilities.

But the physical impairments weighed on him.

"I miss taking walks with my wife — holding hands and walking," Andy said. "We don't even have to talk."

Kathleen helped make the adaptations Andy needed to allow for some normalcy.

"Since he has his chair, his motorized chair, I make sure that the weather is good and tell Andy, 'It's a good day for a ride. Let's get you outside,'" Kathleen said. "You know, make sure he got every day possible out of his life, outside in the air. You know, be part of the world. I knew that was important so that he would have happy days."

Getting the motorized chair wasn't easy. Andy was measured for the chair in March 2014, right after he was diagnosed, but Medicare denied him the chair because he could still walk with a cane.

But when he walked with the cane, his blood oxygen levels would drop.

It became imperative to find another way to get a wheelchair until Medicare would approve the motorized one.

First, the Leclaires received a wheelchair from the Brattleboro American Legion, but it was too difficult for Kathleen to fold and get in the car. They then received a transport chair from the ALS Association's Northern New England Chapter's equipment loaner closet in Manchester, N.H. The chapter continued to loan Andy chairs until Medicare OK'd the motorized chair, six months later.

But many of the ALS Association chapter's loaners had problems. One lacked handle grips. Another's leg supports didn't match the chair. One had broken wheel bearings. The speeds on a motorized model were unpredictable.

As time went on, Andy's communication became increasingly limited. His breathing mask was in the way and his strength to speak lessened.

Kathleen tried to get a special computer through the ALS Association that would let Andy communicate by moving his eyes and blinking at letters or words. The one they received was missing a Wi-Fi card and was so old there was no tech support. It was useless.

Eventually, Andy struggled to make sounds and Kathleen had to read his lips for him to communicate single words.

Kathleen said it was clear the ALS Association had limited resources and outdated equipment for those living with the disease in places like Brattleboro, Vt.

"They may have received $115 million, but they forgot people in rural areas," Kathleen said. "They forgot us. Andy even did the ice bucket challenge in his wheelchair."

SUPPORT NETWORK

Through all of these challenges, Andy said he's been lucky to have the large support group he does because many people do not.

"I've got my kids. I've got my family which I love very much," he said.

Part of working with that support network required preparing their young grandchildren for Andy's death.

The Leclaires decided that teaching the grandchildren "everything we can about what Pa Pa is going through" was necessary to help them understand the situation.

Kathleen had the grandchildren help her with some of the caretaking tasks.

"I don't want them to be afraid," Kathleen said. "I don't want them to not know. I want them to be part of him right up until the end."

The interaction with the grandchildren was good, but not like it used to be.

"I miss getting on the floor with my grandchildren and playing. Just letting our imaginations take us where we want," Andy said. "I got a lot of joy out of that."

Andrew's support network also included the hospice workers.

Kathy Krasnow, a registered nurse with BAYADA Home Health Care, took Andy and his wife to Yankee Candle on her own time.

The Leclaires wanted, but couldn't take Andy to the beach one last time. So, instead, Krasnow took them on a shorter trip.

Throughout the illness, the Rev. James Dodson visited. They discussed theology and prayed.

"Without that faith, which in me is very deep, without that, I don't know, this would be very difficult," Andy said.

"It's truly inspirational to me," Dodson said. "I see as his body gets weaker, his faith becomes strong."

"As far as ALS goes, everybody progresses differently," Andy said. "So, it's difficult for me to say how they should prepare themselves."

As the months went by, the disease took its toll on his body. With his muscles shrinking, he was left with a skeletal outline of his former self.

Kathleen spent her days sitting in a chair, next to his bed -- waiting, watching -- and did whatever she could to make him comfortable.

"I didn't want to see him in pain," Kathleen said. "He is a soldier. A trooper. He will fight this to the end. I couldn't be more proud. He's not given up."


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