Many of the topics discussed on our ALS forum pertain to pALS living with ALS. I am very grateful to have this online community made of patients to turn to and discuss things about living with ALS and ALS research. However, I’d like to turn the focus to our brave, heroic, and selfless caregivers for this post.
Caregivers are amazing, but they also have unthinkable stress to try and manage. Three primary stressors include
Isolation and feeling like they have to do it all. ALS is not only isolating for pALS, but also caregivers. Although within our community we understand the devastation and limitations of ALS, others do not. Friends and family may not be aware of how much support or what kind of support to provide.
Feeling stressed and guilty. Many times, caregivers feel like they have to do “it all” because they love their pALS. Many times, the caregiver is a spouse or a child and by nature, we will go to the ends of the world to take care of those we love.
Financial stress/burden. Many times, especially right after diagnosis of ALS, many caregivers and pALS contemplate their future needs and try to prepare. This often includes costly renovations, moving, and needing expensive adaptive technology and equipment.
As a caregiver, how have you addressed these stressors? What other things have caused you extreme stress? Do you have solutions or recommendations to share?