Five Things I’ve learned through caring for my dad, who is terminally ill with ALS, by Mitzi.

By Mitzi who cares for her father, who is terminally ill with ALS

By Mitzi who cares for her father, who is terminally ill with ALS

  1. Human beings are capable of so much more than we ever thought possible. Sometimes we underestimate ourselves but, really, when you’re in the thick of it, you’ll surprise yourself. When the situation demands strength, you will find it. When the situation demands compassion, it’s in there. And so on.

  2. Anticipatory grief may just be worse than regular grief. Not in general, but in my personal story. Losing my mom to cancer over the span of a year (10 years ago) sucked, but slowly losing my dad over the span of seven years and counting? Every few months, weeks, sometimes days, there is another loss that hits hard.

  3. People won’t get it and while that’s wonderful because it means they haven’t experienced this horrible pain, it sucks because the feeling of isolation is intensified. On the flip side, you can feel connected to so many people that you’ve known for a short time in person or those online that you haven’t even met because you have that shared experience. Don’t be afraid to open up and share your story for this exact reason - caregivers need to stick together on or offline to remind each other they are not alone.

  4. Going to therapy is one of the greatest gifts you can give yourself, if you have the time and the means. I understand it’s not accessible for everyone but I find that it’s really helping me cultivate the necessary boundaries for maintaining mental health and helping me to come to terms with the progression of my dad’s disease and how that is currently and will continue to impact my life.

  5. Have the hard conversations. It’s so important to truly understand the wishes of the person you’re caring for regarding their end of life. It’s equally important to let them know how much you love them. These topics open up the lines of communication and allow for some beautiful talks as well as getting all the important information down.

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Mitzi

About Mitzi
Mitzi is the primary caregiver to her father who has ALS. Seven years into caring for him and 10 years after the death of her mom, she’s learned a thing or two about grief, caregiving, self care, and survival. So much so, that she has written an e-book on self care which is available on Amazon. When she’s not caring for her dad, she manages the office of a PR agency or spends her time working out. You can follow Mitzi on
Instagram.