Committing to be out of the house is tricky because my husband, Todd, has ALS, making him paralyzed below the neck and requiring noninvasive ventilation. As long as his breathing is going well, I can run errands and attend events that aren’t more than 15 minutes away. Longer commitments require me to line up caregivers.
Last week I went to my first high school football parents meeting, as my son is a freshman on the junior varsity (JV) team this fall. The head coach went over practice and game information, then a booster club member made an announcement about the need for volunteers to work the concession stand.
She explained that much of the funding for our students to participate in sports for free comes from the concessions income. She said she’d make the sign-up sheet available after the session and that parents of JV students could sign up to work varsity games, so we wouldn’t miss seeing our teenagers play.
After the informational session, I snapped a picture of the volunteer schedule and told the booster club member that I’d have to check my schedule. Actually, I’d have to check for caregivers because volunteering would require me to work a three-hour shift.
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In any case, most slots were already filled, and I figured she might not need my help, even though I thought it’d be fun to get out of the house and do something “normal.” But a couple of days later, the booster club member called and asked if I could volunteer. She needed one more person for the following Thursday.
“I’d like to volunteer, but I should let you know my husband has very compromised health, so I can only commit at about a 90% level,” I said. “There’s always a chance I won’t be able to be there if he’s not doing well.”
“No problem,” she said. “Just let me know a couple days before, and I’ll find someone else to put in your spot. I have you making popcorn.”
We hung up, but I don’t think she understood how touch-and-go things can get with Todd. If he got sick, I’d let her know ahead of time, but often Todd gets congested in the morning and needs multiple manual assist coughs throughout the day, even without any indication of a cold.
Playing defense
I hoped for the best and asked my mom to be on call in case of an emergency. I also texted one of Todd’s caregivers to see if she could stop by after work to help him in the bathroom. She said she was available and would come by that night sometime after 6:30 p.m., when her shift ended. Shortly after 5 p.m. that evening, I helped Todd in the bathroom and set him up at his computer.
At the game, my son found his friends and I made popcorn. Even though we concession workers couldn’t watch the teams play, I found it fun to be at the first home game of the varsity season. I kept an eye on the scoreboard from the concession stand window. The score was close, and we were ahead at halftime.
My mom called at 8 p.m. to say she was heading home from work.
“We haven’t closed the concession stand yet,” I said. “I think I’m going to be later than expected. It would be best if you’d stop by to check on Todd.”
Twenty minutes later, my mom called to say she was at our house, but the caregiver hadn’t come. Todd was doing OK, though. I suggested she feed him dinner, as it looked like I wouldn’t be home for another hour.
By the time we closed down the concession stand and got everything cleaned up, it was almost 9 p.m. with 10 minutes still left on the scoreboard. The other team had pulled ahead, but the game was still close. I made arrangements with another mom to take my son home afterward while I beat the postgame traffic and got back to help Todd in the bathroom.
We wondered what had happened to the caregiver. I sent her a text.
I didn’t hear from her until the following day. She’d been in a serious car accident and was taken to the hospital. She was OK, but had to be monitored overnight and didn’t have her phone with her. She asked a nurse to look up our landline number, but we no longer had one. It was understandable that she wasn’t able to get ahold of us.
I’m thinking that maybe next year, I won’t sign up to volunteer. I wouldn’t want to leave the concession stand short-handed, and any day with ALS will always be a big question mark.
By the way, when my son got home, I learned that we lost the game, 26-16. Better luck next time.
Note:ALS News Todayis strictly a news and information website about the disease. It does not provide medical advice, diagnosis, ortreatment. 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.
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