When you’re deep in the trenches of ALS, your perspective is thrown all out of whack. You’re doing everything you can to keep your PAL happy and comfortable, you’re worrying if you’re doing more harm than good, and half the time you’re making it up as you go along (because, let’s face it, ALS throws some curve-balls). Talk about stress!
So we did some research, crowd-sourced many of the terrific caregivers sharing their experiences on social media, and came up with this list of mental sticky-notes to help you stay sane and strong.
1. It’s Temporary For You
For your PAL, this fight against ALS is the last fight. So they need you — their teammate, their partner, their right hand person — to give it your all. You’re dreading the end, but you have the luxury of life after the end. You can do this, friend.
2. Forgive Yourself
Repeat after us: “I am not perfect. I have physical and emotional limits. I am doing my best.”
3. Insurance Isn’t Everything
Don’t let limited insurance coverage or tricky fine print prevent you from getting the care and services your PAL needs. Check with your local ALS Association chapter to see what services may be available to you free of cost. We also recommend Patients Like Me, a patient network and real-time research platform.
4. It’s About Your PAL
At some point, your PAL might give up. ALS is a hard fight, and they may refuse help or treatment, or make suicidal comments. Suicidal thoughts are part of the painful reality, and it comes with the territory of caregiving. Your job is to be empathetic and supportive, even if you don’t always understand. You want what is best for your PAL, but what is “best” is subjective. Try to imagine the situation from their perspective. If you were in their shoes, you’d want support and empathy, too.
5. Venting Is 100% Allowed
Just make sure you’re venting to the right people (ie. venting to your PAL probably isn’t the best idea). Let’s be real: ALS deserves every bit of ranting and raging we throw at it, and more. So go ahead, rant to your friends, your family, your running buddies. And if you want to channel all that pent-up frustration into a really good thing, rant on social media, at your ALS chapter meetings, or on Capitol Hill (in a polite, informative way). When thought-out and clearly articulated, ranting is a valuable form of advocacy, and advocacy leads to change, progress, and a cure. There are many social media groups like ALS – Patient and Caregiver Tips that offer members a space to communicate in a safe and accepting environment.
Deep breaths, fam. You’re not alone, and you got this. <3