Caregiver Opens Up About ALS and the Holidays

Jen LeVasseur’s caregiver journey began while she was still a newlywed. Her husband, Noel, was diagnosed with ALS just 17 months after their wedding. 

Noel has two daughters from a previous marriage, Jen two sons. (They embrace the Brady Bunch, blended family analogy.)

We sat down with Jen earlier this year to talk about caregiving and how ALS impacts the holidays.

“Holidays can be difficult for a family living with ALS,” Jen said. “Our first Christmas after diagnosis, you know, we were left wondering is this going to be our last Christmas? Will he be here next year? If he's here next year, what is that going to look like?”

As the LeVasseurs prepare for the coming holiday season, Jen reflected on how her perspective has shifted as they progress through their ALS journey. The family has been through two holiday seasons with ALS so far, and Jen says they have been filled with emotions – some tears, but a lot of laughter is how she described it. 

“Now that we're a couple of years in, we just have to embrace that moment and be thankful for that one more season that we have,” she said. 

Data suggests that caregiving can produce enormous stress for the caregiver – emotional stress, financial stress, and physical stress. Something Jen knows from experience. 

“I actually had a mild heart attack in the middle of all of this. I'm just trying to figure it out. The doctors said it was mostly stress related,” she said. 

That stress is a major reason why caregiver support is critical for families living with ALS. 

“I am learning to breathe each day to find that moment where I can just relax. Sometimes it's doing yoga, sometimes it's going for a walk. Sometimes it's just having a glass of wine and binge watching something on my little iPad. But it's so important to take that time for yourself as a caregiver,” Jen said. 

Jen also shared her perspective on the ways that ALS affects everyone in the family – including the kids. 

“The impact that ALS has on family is huge. Children are processing this just like we are,” she said. 

“They have to deal with the fact that their dad doesn't have the life expectancy they had assumed that he had. And so they also have to process their own grief. Their own image of the future that they had in their mind is now different and has changed forever, and it will never be the same,” she added.

Jen said the best advice she could give to someone newly diagnosed or their caregiver and family would be to take a moment and breathe, to grieve the future that you have lost, to process that grief, and to enjoy the time that you have. 

“You don't know how much time you're going to have. It might be months, it might be years, it might be decades. So take a moment and find something each day that you can enjoy,” she said. 

Jen says she and Noel have been fortunate that his disease progression has been slow relative to other people with ALS. But she also recognized that the challenges she faces as a caregiver will get harder in the future. 

“A lot of people will say, ‘How do you do it? How are you doing today?’ And I know they mean well, and then when they say, ‘I wouldn't be able to do it if I were you, and I look at them and I said, ‘Yes, you would be able to do it if you were in my role,’ because you have to. What are your choices?” she said.

She added: “You have to take care of that person. You wouldn't be able to live with yourself if you didn't. And you just take one day at a time.”

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