Month 3 through 10 or 11 / March-November and beyond, 2000
"The sky is still the same, beautiful blue and spotted white..."
I've been looking to do the third part of the LUCILLE journal for a number of months now, but folks, I am tapped out, exhausted, empty, and time-challenged, so all you're getting here is a quick summarized open-letter. You forgive me, I'm sure. FOR DETAILS: On Thursday, December 7th, there will be an article in the Erie-Times SHOWCASE concerning a reading I'm doing for the Penn-State Behrend Speaker Series at the Little Theatre there that same day. I'll be doing some howling that night, I promise.
It's been a year since she had the heart attack that should have killed her. She continues to chug along. "Fragile but stable." Just about anything, any complication, would most likely kill her. Without her medications, she wouldn't last two weeks, and would probably be gone in less than one. We forge ahead.
In mid-November we were about 48 hours from bailing out and abandoning her to a nursing home. The dementia, an amusing and sad development that arrived a few months ago and deepens daily, had made the day-care situation near impossible—the agency we'd contracted with had exhausted its stable of workers—nearly twenty girls refusing to come back, several of them not lasting a day, leaving in tears. Yes folks, sweet little Lucille, if she is so inclined, has it in her nature to cut off your arms, cut off your legs, and then piss in your mouth until you've finished bleeding to death. Withering, cutting, nasty behavior. She's a killer when in a bad mood. If anyone thinks I'm kidding, come on by...
After a few months of related HEAVY stress, we finally figured it out. Sandy had first offered to quit her job (where did I find this girl?) which would have cost us our health insurance and a wide range of other benefits, and when my new boss heard about this he immediately rearranged my schedule. Now it's Patty Orlando, Lucille's best friend it seems, (and the true reason this has succeeded as long as it has) here Monday through Wednesday; then I'm here Thursday and Friday; and Sandy does the weekends. Crazy, but good, and the change worked out immediately.
Besides the year's care-giving to a slowly fading old woman, the world acted as if we were the official testing ground for Quantity Mayhem. Beginning of December '99, I peed blood. CANCER? Idunno, but I am a dedicated optimist and will have no part of negative supposings that do not actually exist. I decided to not tell Sandy, or anyone else. Because, well: because didn't everyone have enough to think about??? I dealt with this until late July, when tests and probings finally confirmed that I was okay. January through late April was Hellsville with Lu. Veering towards death, stroking out several times a day, sick and miserable until things changed and she leveled off in early Summer. Late May was the benefit, which was a rousing and enormous success and raised $45.00 more than the goal we had set, which made the accompanying storm of logistics almost tolerable. First week of June I Had to Quit My Job of six years... Ummmmm... Philosophical differences? Let's just say that I've spent many years carefully developing my inner world, and my boss seems to have picked up his version at Dollar General. Okay. Also around this time, the stress factor manifested for Sandy and I as an Invasion of Brain Worms. There is much loss of perspective when tested for months on end. Much loss. Spirit is drained. Thought is blurred beyond blurred. Some of these nagging little worms still linger, despite our best efforts, solely because our strengths are waning and we lack the resources to chase them away. This invasion was followed quickly in mid June by a spate of episodes involving family oddities. Volunteerism turning into Cash Demands with no warning. Happy turned to sad. Grateful turned to dissapointed. All that. One of the Brain Worms went completely awry in late June, making me completely nuts for awhile, all wrapped around our failed efforts to save an abandoned Litter of Kittens. I may have had a minor nervous breakdown over this—it ended with a woman I don't even know screaming at me over the phone that we had failed to get them out in time and we were evil incarnate and it was all our fault for like ten minutes while I sputtered and blinked disbelieveingly and tried to explain and suddenly I hung up and felt my squeezed out little soul snap and I began hurling twelve letter words into the air and wrapped it all up by explaining to Lucille, who was in the room with me the whole time, why it was okay to scream those words I was screaming, much nonsense about free expression and the evils of censorship, I mean I really was gone! What a ridiculous boy. In July I got Sick and passed out while sitting on the potty at 4:30 a.m., Breaking My Nose and winding up in the hospital. The next day I woke up with Bronchitis, and all week I felt as if I were being punched firmly in the schnozz each time I coughed. More fun than I've had in many years. By September it was finally determined that this Nose-Breaking Ceremony had been staged at precisely the wrong time: a week after my old job insurance turned off, and a week before my new insurance through Sandy's employer kicked in. Can you all spell "A $3,000+ Hospital Bill"? All this while realizing my wages will be down by nearly 30 percent this year. Yikes! A few weeks later I suffered through a Massive Hard-Drive Crash, which, let's face it, is exactly what I needed right then—to have the major outlet for my passions suddenly turned into an expensive vat of electronic cottage cheese. Around this time, though we had progressed with Lu to the point where we were taking her on field trips every Saturday (grocery shopping, errands, fancy coffees at Barnes & Noble)—she began having her Strokes Again. Not as frequent, but perhaps more severe. The mind began to slip. There were episodes of Dementia, and these become more frequent as time passes. Harmless, for the most part, yet very depressing. So through mid-September and up until just a few weeks ago, everything became very intense and frustrating. The trouble that we had finding someone to care for her was probably the most difficult part of this yet. I suspected I'd be telling you all that it was over by now, that we had been forced to move her out, but we regrouped in splendid fashion. Then, in early October, Sandy's Mother Had a Major Stroke. Paralyzed left-side, drives to Reading, PA, much worry on top of our many worries. There is really no way for anyone who hasn't done this care-giving job to comprehend what all is involved (but thanks so much to those of you who have given it a go) and that we were so constantly tested with all of this other (ahem) CRAP (noted here are just the major peaks in a massive ice-berg) has been almost unbelievable. Our eyes are sore from all the rolling.
ALSO! It took the better part of four months to get situated, but in September (?) the WAIVER program finally kicked in. This is a state-funded deal that now provides enough to cover most of our day-care expenses. We honestly feel we don't require any more donations now, so you're all free to resume your normal lives. The Lucille account has a balance, and at some point in the future I'll find the time to gather all the check copies and ledgers and figure it out, probably sending everyone back their percentage of the total donated, or something. If anyone has any ideas on how to do this better or more efficiently, I'm open to suggestions.
Most Enormous Thanks Due to Patty Baldwin, our saving grace; Shelley Lichtenwalter-Barron, who lost way too much sleep finishing the beautiful LUCILLE Benefit poster; Shelley and all the other artists who donated works for the Benefit Auction; Mark Tannenbaum for his whacky auctioneering self; Doug Reider for his generous Showcase support; more help from Ted Kull , David A. Lawrence, Paul Olson, Julie Hauser and Matt Ferguson, Steve Brydges, Debbie Mooney-Davis, Neil Donovan, The Skeas, Dave Pratte (whose $20 bill Lucille refuses to part with), The Roadhouse Theatre, and I imagine several others who've been lost in the unruly mix in my head.
Where are we now? Well, soon she'll meet Death, and then all of her dreams will come true...
There are times I want my life back... OUR life back. (What have I done?!?!) But then she'll casually remark, between sips of her Cafe Latte, bits of Cherry Danish all up in her claws, that "there's a whole world out here that I never knew about..." and all our doubts vanish. "Well. we know how to have fun!" And we are out the door into the cool evening and as I wheel her down the ramp I see her brace against the acceleration, her white mane lifting softly in the breeze and there is an expanse of empty parking lot in front of us, a sloped thrill-ride calling to her and I push her past our car and begin to run, her hands tightening now on the handles as I tear off into a wide and furious arc and she bends into it, pushing her head forward into the rushing air and I come swooping around to head back again, still picking up speed and there in the distance is Sandy and the sound of her brilliant laughter, amazed and holding open the door as I steer Lucille straight for it now, coming up quickly and screeching to a halt inches from her front seat, and we are all laughing as people sitting in their vehicles and inside in their booths all look out at us in amazement hey look at those people, look at what they're doing with that old lady, just look at that.
—Lucille, during a nice drive last Summer.
Thanks to everyone. We love you all,
Rick, Sandy, and Lucille.
Next: Last Things