|I do a lot of self care. Today it was yoga. And a little drumming. Thank you Yoga-by-the-Sea.|
Aid-in-Dying Laws Are Just a Start
I'd pull out a quote or two, but really you ought to just read the article. All of it. When you get to the part about how much Medicare pays for what, have a box of kleenex and a bucket ready. It's sickening and sad. If I were in the mood for a crying jag, I'd just read that paragraph over and over. I ask myself how in the world we got on this train. Well, it's a money train.
I used to be horrified at my mom's lack of personal awareness and responsibility for her health. Smoking: "Something's gotta kill you." Drinking: "I've never been drunk." (Hahahaha) Exercise: "All that moving around makes me seasick." Diet: "There's not a damn thing wrong with white sugar." The list of surgeries and procedures she's had is as long as her arm. Until recently her list of medications was as long as her other arm. She's racked up a tab with Medicare that ought to win her some kind of prize. Except that would be wrong.
As I've witnessed the loss of more of her abilities, as she's lost most of her desire to engage socially, I wonder what loss will be next. Will she go through another period of excruciating pain? If she lives another month, another year, will she be able to walk--even from the bed to the bathroom? She can't hear much even with hearing aids. She can't remember how to crochet, and I don't think she can really read. Today she couldn't think of the name of the bird she likes best.
During her last hospitalization, when a CT scan turned up a new tumor in her lung, the doctor who delivered this news was young and confident. "You'll want to set up a consultation with an oncologist," she said. I restrained myself from shouting, "Are you fucking kidding me?" My mom has been in what the article refers to the "gray zone" for some time. I do not want to extend her time there. And neither does she. Her advance directive emphatically states that she wants no more surgeries. I think it should be a doctor's job to present to a patient like my mom that she has the right to do nothing, to ask if she has an advance directive (I think it's been scanned into the system at the hospital she was at,) and to read that advance directive.
Three years ago I had some pretty rosy ideas about moving my mom in with me for the last portion of her life. I can't say that I regret my decision. I'm tired to the bone some days, but despite my previous post, I don't see a way to quit. Nor can I conceive of a better option. She's trapped. I'm trapped. But the biggest and baddest surprise was the system. The way she'd lie on a gurney for 12 or 10 or 16 hours in the ER before being admitted, the way she'd be pumped full of antibiotics whether or not there was a clear reason for it, the way she'd be completely debilitated upon every return home after lying in bed with only a 10 minute therapy walk (if it was a good day,) the way most of the staff in the hospitals and doctor's offices never seems to know that she's hard of hearing, the way a weak arthritic person in the hospital can't actually open anything to eat it or drink it, the way I'd come home with an impossibly frail person in the evening on a Saturday or a Sunday on very short notice and then have to go out to get a prescription filled. And the pain. Sure, the system as we know it will keep you alive, but they won't prescribe a decent pain killer at a dose that will provide relief because doctors are worried about being accused of over-prescribing.
Yes, there are good things that happen each day. I recognize them, honor them, celebrate them. And I am profoundly grateful for hospice. But mostly the gray zone is not a happy place. Life is eroding here, inch by inch and it's a real and painful thing. More and more, I do not hold this woman with an 8th grade education responsible for the choices she's made about her health. She's the sort of person who worships doctors. "I've always taken my pills just like they've told me." My pointing finger is moving away from her and zero-ing in on that fork in the road with the sign that proclaims life is better than death no matter the misery, no matter the cost.