Caring for a client living with ALS

ALS nurse and mental health specialist Mary Paolone offers tips and encouragement for paid caregivers and home health aides. Visit our ALS Guide for Paid Caregivers at www.youralsgui... to learn more.
Mary Paolone, MS RN, is the program coordinator, nurse coordinator, and mental health specialist at the MDA/ALS Center of Hope at Temple University. With degrees in nursing and counseling psychology, Mary has worked with chronic pain and illness for most of her career. She has supported families impacted by ALS for over 15 years.
Your ALS Guide is the leading educational website for people living with ALS, caregivers, family, friends, and professionals. Find educational guides, expert videos, practical tips, helpful resources, and more at www.yourALSgui...

[@jamescho725]

Thank you.

[@susankamaka745]

Thank you. Such an important job…My brother-in-law passed away from ALS two years ago. His disease progressed fairly quickly. As heartbreaking as it was to be on the journey with him, it was magical. What an unexpected gift i was given to move to Ohio, and live with him and my sister. The Grace and unconditional love that both he and my sister had throughout was so moving, it’s beyond words. I was so happy to be able to move into their farm, and help as much as I could. What I never expected was this; to be given the gift to witness such a beautiful love story, to witness one of the most selfless, kind and beautiful souls I’ve ever known. He wasn’t afraid to die. He never complained. And the unconditional and unwavering love that he had for his family. He and my sister were married 35 years, had five amazing grown children, and (at the time) one adorable granddaughter. The last five weeks of his life, their children, spouses, our other sister and her husband, his sister moved to the farm. Everyone put their lives on hold. Many of us lived in different states.) We all supported my brother-in-law, my sister, and each other during this bittersweet time. We cried, but laughed even more. We carried each other through…I am so humbled. Although we all miss him so much, I know that he is free of the bondage of his physical body. I also know that his spirit (soul, energy), is completely free. I know that he is playing ice hockey, reading, telling witty stories and playing his double bass. (he played double bass with the Cincinnati Symphony for 37 years) I will be forever grateful to have known him, have him as my brother-in-law and most importantly; to demonstrate the definition of Grace. 😌🙏❤️🤗

[@puppypoet]

Can you explain how it can be rewarding? I hope this doesn't sound bad. I don't see a reward because I can't save my mom from depression or fear or anything.
I don't feel like I'm helping make her lfe easier at all. I just feel like a companion. Maybe it's because I am in the grieving stage? I don't know. But she is absolutely worth whatever it takes. No exhaustion is greater than my desire to care for her.