New around here.My husband was diagnosed 8/2014. I'm his caretaker and also for our 14 year old autistic son. I'm curious does anyone else feel alone and overwhelmed? How is everyone dealing with this? I don't feel supported by our families/friends. (Challenging all 110 to ice bucket and not a single one did it) They just ignore me and our son.I'm frustrated. When does the anger stop? I watch my husband decline and everything just hurts me so much. Does anyone else feel this way?
This is what I learned while caring for my PALS:
First, we ALL feel as you do.
Sadly, friends and family very often abandon us because they're scared; don't know what to say or do. They don't have the courage to stand up to the disease because, frankly, it's not their problem. You're no longer relevant to their happiness and prosperity so they ignore you.
Now I'll say something a little weird, but bear with me. ALS is not your problem, either. It's your husband's problem. Your problem, your
challenge, is to care for him and give him the best life--and the kindest death--possible. You're being exceptionally brave to take this on. Crabby doesn't have a choice, you do. Your choice, like mine and all the other dedicated CALS, makes us different, special. We can be in charge. We draw our strength from loving our PALS (although we might be tempted to pity them).
Our love for our PALS is only part of our strength. You'll need physical stamina to care for a paralyzed person 24/7. You'll also need a mental toughness to help you stay strong emotionally.
How does the anger go away? I learned to accept the fact that friends and family are merely mortals and this is not their problem. Let them go about their lives. By accepting this, your own anger will go away and you'll be better served. Forgive the friends who abandon you, and you'll be more calm as a result. That's what worked for me.
I hope you'll find some solace in my words. Some strength, too. Always feel free to vent here, about anything, anytime. Somebody will be here to empathize and guide you as needed, 24/7.
--Mike