Elderly Parents on the Other Coast (Part 1)

I'm employed again as of today--back with PhoneMonkey communications, the company I was with for 14 years. I'm back in the same setup, working from home, and even on the same desktop PC, that still has all my old work folders, waiting where I left them. I've added a new folder to the list of projects and I'm back to work on the same tech manuals I remember well, that in fact I helped write. I have the shortest learning curve of any tech writer they could possibly have hired; maybe I should have charged more! But it's nice to be working from home again, to shuck off the awful commute, and I'm sorry that it's to be only a 2-week hiatus before I begin commuting once again, Woodinville to Ballard.

So the blog's title is now formally obsolete, but as I struggle to come up with a new one I can finally turn my attention to the other earthquake dominating our life in Seattle, which has received scant mention so far: the fate of our elderly parents on the East Coast.

This is obviously a more dicey subject to write a blog entry about, given that my readers are likely to be some of the very people involved, and it's a test of my ability to move this kind of writing from my private journal into public. Of course it's been a severe emotional rollercoaster ride for Sara and me, combined with krazy Tilt-a-Whirl and Bumper Car games between Sara and the rest of her family, a noisy amusement park that's been open nonstop in our house for three months, and it goes without saying that most of these domestic moments, like photos taken by rollercoaster riders themselves, are unpublishable. But having thrown out the primary, subjective reality, which would have filled pages of the private journal, the blog entry about dying parents may, I think, continue, inasmuch as a long-lens view of Coney island can communicate more of the shared experience (and it IS a shared experience), and even photos from far out in the cold Atlantic, where the shouts and bells of the island appear in silence as a string of lights along the far edge of darkness, twinkling at the last lip of the curved world, are among the most evocative.

Sara's mother is dying of cancer of the gallbladder. Her entire case has been mismanaged by what passes for the health care industry in this country. What's more, since she's on the East Coast and we're here in Seattle and basically broke, there's been little we can do except follow the events by phone, trying to put doctors in touch with social workers and hospitals in touch with hospices, struggling to arrange visiting care, researching Medicaid paperwork, etc. Sara's sister, who's also on the East Coast, has been forced to bear the brunt of the hands-on care, a situation designed to cause familial imbalances just when harmony should most reign. Sara did make a trip East for a week, but right now it's time for another and we don't know if we can afford it, given that we're soon to make yet another for the funeral. Being far from a dying parent in a capitalist world is a special kind of nervous, frustrating, heartbreaking ordeal.

The hardest part, though, has nothing to do with money. It's the illusion that, since we're so far away, we don't care as much. Nothing could be further from the truth. Losing a parent is losing a parent; that pain knows no distance; in fact it's made worse by distance. But an aura descends on us out here in Seattle, as if we bask in sunshine while they slog through blizzards, as if our grief and frustration were somehow a liesurely dismissiveness. Maybe the illusion comes from back there, maybe we cast it on ourselves; either way it turns to guilt, false as everyone knows it is...

The medical mismanagement goes like this. In December Sara's mother went into the hospital in Vermont for a bile blockage, whereupon they found the cancer at such an advanced stage that after sewing her back up they were afraid to touch her. She was very close to a puncture event that would be swiftly fatal; they told us she had precious little time left, and recommended that she go straight into a rehab or hospice situation. For the moment, however, she was still fully mobile and mentally alert--which meant that she fell through the cracks. Rehab wouldn't take her because she was in such immediate danger, and hospice wouldn't take her because she wasn't obviously sick. After a few days in the hospital, the hospital suddenly changed its tune and decided that she was perfectly safe and they were releasing her home. The revised verdict had nothing to do, of course, with their running expenses...

So Sara flew East, picked her up in a snowstorm on Christmas Day, and took her home to her third-floor walkup in small-town Vermont. She spent a week caring for her there, all the while scrambling to arrange a next venue. We looked into assisted living situations both here in the Seattle area and in New York (where Sara's sister lives), but filing the requisite Medicaid paperwork took forever, and Sara had to leave her mother at home when she flew back on New Year's Eve.

We shall pass over the blurred photograph representing the unseemly family tug-of-war over which State should get her; during this time we arranged visiting nurses, while the Vermont neighbors proved heroic in their kindness and attentiveness, and Sara's sister travelled up from New York virtually every weekend. Still, the longer their mother lay in that third-floor walkup in the snowbound New England winter, the more untenable the situation got. During the blizzards of '10 we had only one visiting nurse who actually made her visits...

Finally arrangements were made to bring her to a hospice care place in New York. Then--the hospice lost the paperwork. The arrangements had to be made all over again, and more weeks slid by. Sara's sister moved up there for a week and assumed caring duties. The time where she could be safely driven to NY (if there ever had been one) was long past, and yet we couldn't afford anything other than just putting her in the car and having Sara's sister drive her. Sara and I tried extensively to hire a nurse or even a skilled caregiver to accompany them, to no avail. At the 11th hour, a friend of Sara's sister donated, as mentioned, the funds to pay for ambulance transport, and three days ago she arrived safely at the NY hospice.

However, the Medicaid paperwork STILL hasn't gone through. She's been accepted on a basis called "Medicaid pending," which means basically that the State can shaft us for the bill.

And now Sara and I are trying to scrape together the funds for another trip East, so that Sara at least can see her mom one last time...only to find that airline prices have skyrocketed.