Here’s the thing about living with someone who is dealing with a long term debilitating illness. You know the end game, so you know that the emphysema, and arthritis are doing their damndest to take him from you before you are ready, and no matter how much it pisses you off-there is nothing you can do. Also, there is no instruction manual to being the friend, spouse, lover, caretaker etc. to someone dealing with a long term, debilitating, terminal disease. There is not a one size fits all kind of answer for these types of situations.
Right now his chronic pain, due to all the lovely rain we’ve been having, coupled with his breathing issues, from all the humidity, natch- are really doing a number. I want to remove the pain, I want to take it on myself so he can have some relief, but I can’t. I hate, more than anything, this feeling of helplessness. It’s breaking my heart.
We don’t have him covered on insurance. If I had, when I first got my new job, we probably wouldn’t have made it through the summer, after there was some upheaval in the living arrangements and one of the boys moved back to his moms to help out there. I totally understand, and agree with his going, and understand that he needed to help his mom, I am just bummed that it hit us at an inopportune time. It was his mom, though,I’d do the same thing if they’d let me, but that is another rant for another day.
We live in Mo. which is doing its damnedest to not make it easy for a person to learn what the need to do to check into the affordable care act, fuckers. I worry about figuring all of that stuff out, as well. I don’t want to mess anything up!
So there are days where my heart aches, and I wish I really could just wiggle my nose, and make him feel better. Since, Goddess knows, if he takes the meds for one thing, they contraindicate with the meds for the other, so yes Mr. Dragon you can breathe, but you are gonna hurt the whole time you’re doing it. Now here’s a fun fact - that migratory bit of the arthiritis? That just means it’s a spin of the wheel as to what will hurt on any given day, or any given hour- HAHAHAHAHA – so you can’t even plan for it.
(In my weirdest nightmares about his two illnesses I picture the arthritis as the Joker, and the COPD as a Bane type character, and I’m not really sure what to make of that, at all.)
I sometimes wish there were a guidebook to tell me what to do next, and how to deal with my emotional upheaval, but I know it’s different for everyone in this kind of situation.
Hopefully, if nothing else, I am bringing joy to help burn out the pain.
*Title is a quote from Joseph Campbell