One can look from the periphery and never really understand the depth and despair that life can bestow on individuals and their families. You can say I understand and never really do. You can say I’m sorry and never really, really know what you’re sorry for. You can say call on me if you need anything, and never stop by unexpectedly to lend a hand.
The life of a family caregiver for an ALS patient is a solitary one. Not only are they dealing with the future loss of their loved one but are also dealing with a loss of their support network when it truly becomes untenable. They’re having to care for their loved one but they are having to continue maintaining the household, advocating on behalf of their loved one. Navigating through the minutiae of healthcare policies and obstacles.
I have learned that caregivers of ALS patients, this is not intended to detract from any other Caregivers for the multitude of other conditions, are some of the strongest individuals on Earth. ALS has been known to destroy families and marriages. In turn it also has the ability to bring people closer and solidify the bonds of love.
I assure you those eyes that track your every move as you buzz around tacking care of us, are full of Love & appreciation. That squint in between the rhythmic hum of the vent says “you mean so much to me”. Inside we are screaming “thank you, thank you, thank you!
If you know anyone who is suffering along side their pALS who needs a break schedule a moment to stop by even if it’s just to spend a few minutes with them. Rally around them and perhaps pamper them for the day. They will not want to leave their loved one and will fight you all the way but trust me they need it and will be eternally grateful.
I am very blessed to have an amazing partner and an incredibly supportive family and network of friends. I also know that my condition has not reached its serious stage. Greater challenges are coming both internal and external. My heart breaks for those who find themselves without an extended network of support and who are battling at every turn just trying to receive the medical care and resources needed to sustain a decent quality of life; holding On by a thread. The adage of ” you don’t know how strong you have to be until strong is all you have left”, cALS live with that. Yet they will assure you that they are fine, when you ask them how they do it they will reply simply by saying “I just do”.
Angels on Earth as far as I am concerned.
All my love,
The “Juan” and only