Andy's Journey: The Struggles Through ALS | Part V: On his own terms
After lengthy fight with ALS, Andy Leclaire decided it was time
BRATTLEBORO — "You want to go?" Kathleen asked.
"You want to go meet Jesus?"
"Are you sure?"
Andrew Leclaire passed away Sunday, Aug. 28, 2016, at 12:40 p.m. He was 59.
`ALWAYS BE WITH YOU'
Diagnosed in February 2014 and after a nearly two-year battle with Amyotrophic Lateral Sclerosis, or ALS, Andy Leclaire had come to be at peace with his death.
That morning, he decided he had had enough, and he asked Kathleen, his wife, to pray. His voice weakened by the disease, he mouthed the word, "Go."
A serious conversation began between Kathleen and the attending hospice worker, Kathy Krasnow, a registered nurse.
Before Andy died, Kathleen told him, "I will not let you suffer and panic. I will always be with you." It was the message on a candle Andy had given to his wife just a few weeks before his death.
The process then began.
The Rev. Justin Baker, of St. Michael's Catholic Church, was called to read Andy his last rites.
Andrew's children, Andrew Jr. and Angela Rae Healey, and his two sisters, Vicki Leclaire and Diana Shepard, were called to attend.
Even on his deathbed, Andrew maintained his sense of humor. The Monday before he died, he played a practical joke on his daughter Angela and his younger sister, Diana. As his sister adjusted his breathing tube, he went limp and stuck his tongue out a bit. They froze. His sister's face went red when Andy started to smile.
Once everyone had arrived and the last rites had been read, Andy was administered medication for pain and for anxiety, per doctor's orders.
Since his mind had not been affected by the ALS, he knew what was happening.
The breathing mask was slowly removed, and with that, he died.
"We were all still praying when he left," Kathleen recalled. "He looked like he was looking at something on the ceiling. We were hoping he was seeing the bright light and was with Jesus."
Kathleen wanted to begin cleaning and preparing the body at home. "I said, `Don't touch his feet,' when they started cleaning him. I wanted to wash his feet to cleanse him from this earth to be with Jesus."
When funeral home staff arrived, Kathleen asked them not to zip the bag. It made her claustrophobic. The funeral home worker agreed — the Leclaires live on Mountain View Avenue, a back road in Brattleboro, and no one would see.
At the funeral home, Kathleen picked a plain, wooden casket. It's what he would have wanted. The choice made "me feel like I'm doing the right thing," Kathleen said. She said they had agreed to make it as inexpensive as possible, like their wedding.
Kathleen then needed to decide what would become of his wedding ring. She decided she should keep it.
As the days went by, she visited the funeral home.
"Seeing his body be prepared, it didn't bother me," she said.
As it was time to say her final farewells, Kathleen kissed his fingers and touched his lips.
"I'd marry you all over again," she told him.
After Andy's death, Kathleen had to make peace with how he had died. She reflected on all this in an interview a few weeks after Andy's death.
"I laid in his bed for three or four days after. I would practice looking around to see what he could see, and how confining it is to not be out of that bed for four solid months. What entertained him? How did he keep his sanity?"
As she spent the time in the bed, she realized Andy could only see the window, the TV, the computer — and her.
She resolved that what kept him sane must have been the Bible, his computer, people visiting, the research he would do, and Father Dodson's visits.
Kathleen concluded that time, however, was stolen from her and him.
"That whole year of wasting Andy's time," Kathleen recalled, referring to a delay in putting forth an ALS screening for Andy. ALS is hereditary in his family, and at least 30 of them since the 1900s had succumbed to the disease.
Kathleen said she wished that "doctors out there, that if they know that it runs in the family, that should be the first thing that they look for."
"He could've looked at it and seen if it was active. Then Andy could've had that one year where he was walking pretty good that we could've gone places and done things before it got bad. He could've gone to the ocean for another time, which he loved to do.
"But, no, he worked until he couldn't stand anymore. Then the doctor says, `I guess we should put ALS back on the table.' You wasted all that time and now he has no energy in his legs. It's frustrating."
Not getting to visit the ocean one last time was a source of frustration for Andy and Kathleen.
"It was one of the last things he wanted to do, but we couldn't get funding, or a vehicle, or some kind of transportation to get him there comfortably, and have a nurse with him, because anything could happen."
Kathleen reflected on some of the more beautiful moments the local community made possible.
She remembered when The Fling Quartet from the Brattleboro Music Center came to perform for Andy, and how much joy it brought him.
"He cried" she said. "He didn't sob; he had loving tears. He called the cello the sound of angel's wings and totally enjoyed that and I loved watching him."
Kathleen also remembered those who travelled to visit him to show their love and support, such as Team Godfather, an ALS charitable foundation from California, which made a special trip to Vermont on a bicycle trek across America to visit Andy.
"He perked up and was so happy that somebody remembered him," Kathleen said. "He wasn't forgotten and that he was doing something good to get through to people."
Not a day goes by ...
When Kathleen walks by his picture, she said she still says to him, "I miss you, Boo-boo."
It's different though, for her.
"Now that he's gone, I see him without the disease. Andy was my energy."
She said she's lucky she still has a good support network of friends and family who are worried about her being alone and who visit frequently.
Without Andy, Kathleen reflected on her wedding vows and their love.
"You say, `until death do us part.' And like I told him, I'm going to take care of him until the end. I signed that contract."
When a couple is dealing with a terminal disease, "You are each other's advocate," Kathleen said. "If you understand marriage, you understand that. I would've taken his place in a heartbeat."
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