A week in the life of an overwhelmed caregiver

I’ll be straightforward about caregiving: It’s exhausting. I’m the mother of seven children: Lexi, 23, Max, 19, Chance, 17, Rowen, 16, Charlie, 14, Mary, 10, and Callie, 3. I’m also a caregiver to Max, Rowen, and Charlie, who have Duchenne muscular dystrophy (DMD).

You are catching me during a challenging two-week period. My husband, Jason, has been traveling for work for his second week out of three. Between that and juggling my job commitments and my children’s busy schedules, it’s taking a toll. My brain is running low on power — so low that I struggled to focus on one topic for this column. So I decided to share what’s been happening in my Duchenne world.

Recommended Reading

August 9, 2024 Columns by Betty Vertin

The dance floor at my daughter’s wedding had room for all

Caring for my children is as natural as breathing

I will do whatever it takes to provide all the care my children need. I don’t need to be thanked or applauded.

My oldest son, Max, recently turned 19, making him an adult in the eyes of the state of Nebraska. Therefore, I can get paid to be his caregiver. It doesn’t need to be said, but I will care for my son without being paid. But Duchenne is so expensive, and it’s hard for me to work in a position to earn the big bucks when I’m also a dedicated caregiver. A little extra money to do what I already do is helpful.

The part that has me shaking my head is the number of background checks my family has undergone. Jason and all of the children living in our house over 13, including all of Max’s siblings who have Duchenne, had to have background checks. I also had to go to the Nebraska State Patrol office near me to register my fingerprints.

I know that not all caregivers are parents, and I’m glad there is a thorough process, but I am their mom. (Just so you know, we passed everything. No surprise criminal backgrounds here!)

Minivans and music

We’re still without both of our accessible vans. After two attempts to fix our primary van, it still needs a new engine, which should be finished next week. For the past three weeks, we’ve been renting an accessible minivan. It’s not ideal because it’s expensive, but with three sons in wheelchairs, we had no other options.

One good thing has come from it, though: We love it. It’s smaller than our 12-passenger vans but still holds two wheelchairs. Plus, one of the boys gets to ride in the passenger seat area in front, which they enjoy. We love the minivan so much that we’ve decided to buy the same kind.

We’ll always have a big van for when we travel with all three boys to medical appointments, on family vacations, and more, but now that Max is in college, they’re rarely all together, so a minivan works perfectly. We never would’ve figured that out if our other van hadn’t been damaged in an accident, so I’m considering it a silver lining.

Max is a freshman in college and is planning to spend the weekend on tour with his college choir. Last weekend, the college had a small performance to kick off the tour, and they sounded amazing. Tears rolled down my cheeks during their performance. I’m sure they’ll be well received and applauded in each of the three cities where they’ll perform.

Max has always brought music to my life. Starting when he was a young boy, he took piano and drum lessons, then graduated to voice lessons, show choir, and musical theater. Max has genuinely been the soundtrack to my life, because wherever Max is, there’s music. He’ll always be a musician. Duchenne has never been allowed to interfere with that passion of his.

DMD may have reared its ugly head and forced many changes, but it hasn’t ever defeated Max. And now he’s going on tour, so that’s a win!

Note: Muscular Dystrophy 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 another 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 Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.