Report from Pillville: Read This.

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.

Dear Senior Citizens, How do you manage alone?

"I wonder if I'm ever going to get my bill for my health insurance," my mom says to me while I linger in the kitchen avoiding the dastardly coughing woman in my yoga class. Last night the wind rattled my windows, rattled my house, rattled my bones, and my very soul. Without any sleep this could be the morning Coughing Woman breaches my immune system---so I have a second cup of coffee. Oops, too late to go to yoga now.

"What was that you said about a bill, Mom?" My exhausted brain hears the alarm bell, albeit ever so faintly. Out from her bedroom she shuffles with an invoice from December, explaining that the December 1st payment was the last one she'd made. My mother has Medicare, but she also has supplementary insurance through the City of Baltimore where she worked for several years as a janitor in city office buildings. With all of her health issues, she needs that secondary insurance. The upper right hand corner of the last month's invoice carries a terrifying advisory, "If payment is not received by the due date, coverage will be terminated." Last week's trip to the emergency room rose up like an anvil ready to drop. "Uh-oh," I say. My mom went on to explain that the City of Baltimore sends a packet of a year's worth of invoices every January--but they always send them late. The payment is due on the first of the month, but the invoices never arrive in time.

I decide to call the employee benefits phone number listed on the invoice. It's 9:00 a.m. in California. There is no answer in Baltimore. Maybe I mis-dialed. I try again. Lunch? I try an hour later. Still no answer. No outgoing push one for this, two for that message either. Is it a holiday in Baltimore? A week long festival for the inauguration? Martin Luther King Jr. Week? I try the main number for the City of Baltimore. The menu of selections doesn't apply to what I need, but I select for speaking to a real live person and remain on hold for, I dunno, ten minutes? Meanwhile, my mom and I discuss auto-pay options--putting her monthly health insurance premiums on a credit card and enduring the service charge, auto-deducting  the payment from a checking account; why we should do this, i.e. what if you're sick mom, and in the hospital, and I forget to pay it for you? Still, I'm on hold, so I hang up. I grab the iPad and go to the City of Baltimore website expecting to see some banner across it: "City Closed on Mondays," or "Monday is Furlough Day." No. So I scroll through each link to see if we can accomplish setting up the auto-pay online. No. I try the first number again. Ah! "Push one for employee benefits." The person I speak to ensures me that they have the correct address for my mom, that yes, they send out the invoices late every year, that no her coverage isn't lapsed. "I'd like to enroll her in auto-pay," I say. She tells me that the person I need to talk to is on another call. She'll call me back.

It's noon now in California. 3:00 in Baltimore. While waiting, I've checked on my Mom's catastrophic coverage from Care First--which is, essentially, Blue Cross and Blue Sheild, too. My mom thought she'd changed her address with Care First by enclosing notification of her new address with her payment some months before her move here in August. When we finally received the forwarded invoice from them for the next payment, her coverage had lapsed. It took a bit of ranting, but I got it re-instated. It turned out that if you want to change your address with Care First, you need to call them, wait on hold for awhile, and then have them tell you the address of the mail room administrator in Lexington, Kentucky. This address appears nowhere on their invoice. There are no instructions of any kind on the invoice for changing your address. They will, however, drop you like a hot potato if your invoice goes to the wrong address causing you to pay late. But this morning, no worries there. She is paid up currently (after the near disaster of the lapse.) I requested a letter of confirmation. Which I had already requested in writing back in August when I wrote them a letter then after the reinstatement.

I assume that if we had national health insurance in a single-payer model, it would work much like Medicare. Here I am. A person. A citizen. I have this coverage. There would be no dancing around with invoices sent late. No slipping through the cracks. "Ooohhh, this country will never have health care like that!" my mom says.

Oh, dear old people,  especially you who are hard of hearing or with failing eyesight, you who are not computer literate, you whose blood pressure spikes a bit as you struggle to decipher "press 1 for this, 2 for that, etc," how do you manage? From the bottom of my heart, I hope someone is helping you.

The Morning After

A dirty wine glass and an empty wine bottle sat next to the couch this morning. Leftover Halloween candy wrappers littered the coffee table. A trail of clothes that, in other circumstances, might have indicated unbridled passion led to my bed. Stumbling into my bathroom early this morning, I nearly got tangled in my favorite gray sweater with its "I Voted" sticker. All in all, it was a far less traumatic evening than I had anticipated--though I'd have less of a candy hangover and might have hung up my clothes if Mitt Romney had made that phone call a little earlier.

California still has unlabeled GMO food and the death penalty, but the Three Strikes law makes a little more sense. And there'll be be more support for education. Gay people now have the right to marry in a couple more states, though in Minnesota that fight still needs to be fought--- but, despite the efforts of the Catholic Church, the state constitution there does not now limit marriage to a union between a man and a woman. So there's hope. Hope for the Human Rights Campaign. Hope for better health care. Hope for the economy. Hope in the face of climate change. Hope for tax reform, fair pay, better schools.

I'm pretty sure I looked right into hope's eyes when my mom and I went to the local elementary school to vote yesterday. As I waited for her to finish marking her ballot, a class of first-graders was ushered into the library/polling place. They maneuvered silently to the edge of the room and sat on the floor as their teacher spoke quietly to them in Spanish. One of the poll workers offered sample ballots and dozens of  hands reached eagerly for them. There was a flurry of excitement then. "Dondé? Obama?" They turned the papers over looking for his name. "Aqui. Here." The children leaned into one another and pointed.

"La Senora," the teacher began as she pointed to my mom who was still working on her ballot. The teacher then took a sample ballot from one of the children and showed them the blank space that must be filled in to mark the ballot properly. She pointed at the top of the page and trailed her finger downward. "President, Senator, Congress Person," she said.  When my mom finished she fed her ballot, first one page, then the other, into the machine. The children watched and then followed us out. A parade of hope.