Growing Up With a Parent’s Illness

Growing Up With a Parent’s Illness
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I cried as I listened to an episode of the “Everything Happens” podcast. Writer Samantha Irby described growing up with sick parents. When she was 9, her mom was diagnosed with multiple sclerosis, and her dad struggled with heart problems for years. They both died when she was 18.

Irby said, “The other pressures and desires of being young don’t go away just because you’re dealing with this hard thing. So, I still was worried about having friends and being popular and who would date me. What was my GPA? … Multiple sclerosis is the kind of thing where, at least in the ’90s, you’re really watching someone die — bit by bit by bit. It takes a long time.”

She compartmentalized her family life and her friends at school. “No one wants to be the person at the lunch table who’s like, ‘So, guys, my mom stopped walking completely.’”

She wanted to have some semblance of a normal teenage life, but her parents’ needs were overwhelming, and she felt powerless.

Irby said, “We didn’t have any money or anything that makes having a sick parent easier. It was like, man, I gotta wear clothes from the Goodwill and have a dying mom and also worry about getting a B on this chemistry test.” She feels like she lost her childhood.

It was enlightening to hear from an adult who has processed something similar to what our kids may be going through. Whatever kids grow up with is the only reality they know, so they cannot step back and gain perspective until later.

Mindful of how his ALS could impact our children, my husband, Todd, and I have had conversations about how we should involve the kids in his care.

On one hand, families help each other. That’s an important lesson for kids to learn, and we have them do a number of things: adjust Todd’s arms, scratch itches, and load him in the van. They set him up on his computer and go get him when it’s time for dinner.

I know of other families affected by ALS who have their kids suction the trachea, and it doesn’t seem to faze them. One of my fellow spouse caregivers shared a photo of her toddler helping Daddy put his foot on the wheelchair footrest so they could go outside to the park.

We want our kids to help because that’s what families do, but we’re intentional about not putting too much on our kids at a young age.

I was hesitant to teach my daughter how to give her dad a manual assist cough, even though she’s as tall as and stronger than me. It seemed like it could be distressful for a teenager, but sometimes she’s the only one home with her dad, and I thought it would be worse for her to feel helpless while he struggled to breathe. So, I showed her what to do, and she has helped him a couple times. She said it wasn’t hard.

We don’t have our kids assist their dad in the bathroom or stay up at night turning him.

Some kids are asked to do unpleasant and difficult tasks because there aren’t other options. Every situation is different, and every kid is different. Parents need to weigh competing interests and make the best decision for their families.

I was struck by Irby’s comment about not having resources that make having a sick parent easier. Managing illness and disease is indeed much easier with more money and better support systems. Without the financial support from friends and family, which allows us to hire caregiving help, we would be in an impossibly tough situation.

In the United States, it is difficult to get caregiving help through Medicare, so the burden falls on the spouse and sometimes on underage children, who have to grow up too quickly.

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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.
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Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.

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