Search
“PALS Guilt” Chapter 160
- David DuBois
- 2 days ago
- 2 min read
Have you ever felt guilty over something you couldn’t control?
When I married Laura I absolutely meant every word of “for better or worse” and all the other vows too.
When I was first diagnosed with ALS, the symptoms were so small that I brushed them off as side effects from the COVID shots. The worst problem was that I couldn’t whistle, but nothing else had really changed. I went to work, drove my car, gardened, did things around the house, and even had sex with my wife.
As my ALS progressed, it started to impact my life. The first thing to go was my job because my voice began to slur and weaken. I had to repeat myself often and use a speaker to project my voice so I could be heard during meetings. I stopped answering phone calls and relied on email to communicate. I felt guilty during those last six months as I was unable to do my job the way I once did.
I realized I couldn’t safely drive myself to work anymore after one particular morning. I was driving when I supposedly cut a guy off. He got my attention and we pulled over. He came out angry, pointing at his beat-up car and accusing me of pushing him into the wall. I looked but didn’t see much damage. Still, we exchanged information. His anger faded quickly when he noticed my slurred speech and realized something wasn’t right. He seemed to wonder if I should be driving at all. The guilt didn’t truly set in until after 25+ years of marriage when Laura began driving and I became the passenger.
Before ALS, whenever something broke around the house, I fixed it. Growing up, I worked as a general contractor before joining the Army, so electrical work, plumbing, and home repairs were second nature to me. Laura and I used to garden and care for the yard together. These days I can’t do anything but sit and watch strangers come into my home to fix things that once cost me $5 and 15 minutes, and are now costing me $100. I have to sit back and watch my family work in the yard and garden while I can only watch.
It’s very understandable that PALS (people with ALS) feel guilty when everything needs to done for them... especially when their loved ones have to pause their own lives to help. I felt that same guilt too until I realized my family helps me because they love me, not because they have to. They stop their lives because they want to.
PALS don’t need to feel guilty - this life isn’t a choice. I only feel grateful that I have family and friends who love me.
Love and blessings.
I love to read your comments and hear your stories! Please rate my post and leave a comment below. If you’re not signed in when responding, your name won’t appear, so please include it in your message. I truly enjoy knowing who’s sharing their thoughts with me.
6 Comments
Rated 0 out of 5 stars.
No ratings yet
Dave I really appreciate the way you are sharing your story with all of us.
Dave,
Thanks for yet another very mindful blog. Though the only difference is the awareness is for the PALS and not just the family and caregivers . Your voice is so loud and powerful and you are seen and heard ! Thanks for being you !
Continue, love, prayers and healing energy
Victoria
Guilt is one of the hardest feelings for which to forgive yourself. I struggle with it every day and I don't even have the issues you are dealing with. When I read my religious material, I learn that it is the devil at work. He wants you to feel guilt because shame comes with it. With shame comes unworthiness. With unworthiness comes despair, and despair is the unforgiveable sin. I'm glad you are so positive and remembering that your family loves you. Your wife meant those words too, when she said, "For better or for worse." She's an incredible woman, and she shows that every day with her love for you!
Guilt is inevitable when the pALS begins losing function and independence. In a household where roles were traditional male-female, having the cALS take over tasks, however small, that the pALS was responsible for is the perfect breeding ground for guilt. "I'm sorry you have to take out the trash", is where it began for us. I reassured my husband that it was not a big deal and that I didn't mind.
As time went on, my husband's inability to mow the yard, clean the pool, or do simple repairs around the house was replaced by a landscape service, a pool-cleaning service, and other hired skilled tradesman. All of these changes were made at my husband's suggestion. Once he accepted that…
David, I love reading your blog, I get perspective from the PALS husband point of view as my husband doesn’t share his feelings. Guilt didn’t occur one since it a disease no one choose, but I can see that cause as a CALS I have guilt as well. Thank you for being so honest.