@sillyblone

People mean well. Sometimes, though, they just don't always choose their words as carefully as maybe they should, I guess.

I say, actually, it IS about us. Maybe not ALL about us, but it IS about us. It's about BOTH of us. That's the essence of this site, offering us, here, a place to vent and find support. If we thought it was ALL about us we wouldn't be able to live up to the title of CARE "GIVER". We keep going and "giving" because we "care". It's just such a pity, though, others (especially within the medical profession) that that isn't recognized and respected enough . . . Even sometimes by even the "patient".

I wish, at least, here at the local level we had more recognition. I've found MAYO much better at that but there is still much more that could be offered to the people who, when expected to get all those tasks done, we're offered a place we could go to for help and understanding. The "fairies" sure aren't around when you need them and not all of us have family or "fellow parishioners" to pick up the slack.

Living on this side of the picture is exhausting! And to have to beg for support only adds to the stress.

My husband's oncologist's staff literally told us that to arrange for some "therapy" and emmotional support for me, they would have to lie in their notes and say the therapy was being requested for my husband and that to get me the help I needed, they would have to have him request it for himself and go with me to the first couple of visits. Like HE needed anything more done for himself. He already was being given everything he needed before he even knew he needed it and, of course, what else, in the world, was he NOT getting from me at home? He already had all those home-cooked meals being made, the best mouth sore concoctions being found on the internet and shipped to his door, and his stomach injections being given to him so he wouldn't have to make another appointment to have them given at the doctor's office. The snow was being shoveled. The grass was being cut. The bed linens were fresh and his house was cleaned. So guess what. WE never got the professional help we could have used. I didn't want to add to his already ridiculous heavy burden, even though I was carrying one of my own.

Those "fairies" sure do a good job, don't they?

What made it impossible for me, during the worst of it, was the fact that even HE took it for granted sometimes. I get why the "patient " has to come first but, for gosh sakes, shouldn't the other side of the equation be recognized too and have a place to turn to for help and emotional support without being made to feel they're being judged as not being able to handle it, labeling them as whatever a pejorative someone thinks would describe them?

This stuff is impossible to deal with sometimes and it doesn't get done by itself. And if we didn't "care", we wouldn't keep "giving" of ourselves, our very sanity at times, to those we love.