Wow, Karen! I had to look at your profile to see if you were someone's hi powered attorney!! And, good for you for keeping so on top of things in face of the gov't agencies. We also ran into one particularly insensitive lady who kept us sitting in straight chairs for about three hours, while asking question after question, filling out form after form. At one point, with my son sitting right there in front of her, with surgery draining tubes hanging around his neck, weak and defeated, barely able to speak, she looked at me and asked 'Is his cancer terminal?!" I wanted to spit in her face! My son's life has changed so dramatically for the better now, with a great "new normal", it's made me really appreciate all the good and wonderful people in our lives, and I tend to stay away from the ones who are "vexations to the spirit". So for anyone out there who might be in the throes of cancer recovery, experiencing depression, divorce, no job, no insurance, losing worldly goods, bankruptcy, losing your treasured motorcycle (that was a biggie for my son) - even if you cannot see the the "why" or the "how", it CAN get better and it DOES!

Oh, the things that advocacy requires of a caregiver!!! GREAT advice Karen and Anne-Marie! It pays to question, keep good notes and documentation, and be informed.

@ Anne-Marie: The line "vexations to the spirit" so aptly describes some people. I always keep those words in
mind. "Desiderata" is a great poem.

Good luck to all,

Sandy

Anne Marie

on his good days Alex calls me persistent. On his bad days it's bully. I am way past playing nice with fools who think they might get away with witholding benefits from Alex. Much to Alex's consternation I also have no care for what they think of me as long as Alex gets everything he needs (so I do my "bullying" outside of his presence).

Even an accountant on this forum who shall remain nameless, asked if maybe I had been a drill sargeant in a former life when I made Alex test a number of treatments to help with mucous/phlegm/saliva or whatever it is that gives everyone so much grief soon after radiation. I wear that label with pride.

Since I have deviated so far off topic, I would also like to add that all the posters on this thread inspire me with your ability to advise and counsel with such clarity and softness which makes me reconsider my own bluntness. Doesn't work for very long though

Sometimes when "playing nice" doesn't work, it pays to get into the "bully" mode. There are many times I wish I had been more of a drill sargent in my role of CG. I really appreciate the "nameless accountant on this forum" with his direct "telling it like it is" approach and all those like him!