Saturday, June 8, 2013

How happy is this birthday?

My mom turns 87 today. She's mentally impaired, in a nursing facility, getting therapy for her latest stroke. They've put her on a higher dose of seizure medication so that she's in a constant twilight of near-sleep. She doesn't have the memory to recall her life, my dad, our family. I can't imagine what she'd celebrate if she miraculously remembered this is her birthday.
4 generations last March
Two weeks ago, on Memorial weekend Friday, she collapsed. Again. Her doctor happened still to be on site and sent her off immediately to the ER. We endured the HIPAA communication nightmare but previous bouts with the hospital administration rewarded me (her HC POA) with a call back. Her blood was thick, despite the coumadin, and her atril fibrillation meant it was likely a clot of thickened blood had lodged in her brain (no bleeding in the CT scan). She couldn't move her right side or swallow, and her speaking was impaired. Her pacemaker meant they couldn't confirm with an MRI and the coumadin meant there was no treatment, so they admitted her. She has a DNR but she was stable, so no extraordinary measures were required. She didn't get worse, well at least on their medical scale, which doesn't consider her increased continual drowsiness.

Because of her lifecare community's nursing availability, she was released in "only" a week. We haven't got her bill yet for non-covered expenses, so no rants about the exorbitant charges.

She gets up to 100 days of therapy from Medicare: occupational (can she take care of her hygiene? of course not, she couldn't before!), physical (can she resume the manual walker? Are they kidding? The more operative question is: since the right-side weakness will likely require a motorized version, will her mental ability be enough to learn its operations?), and speech (can she recover her words? She'd groped to communicate before; at this point, can she even understand the questions and make the appropriate physical responses?). I don't see 20 100% covered days or the following 80 @ 80% (costing her thousands and the taxpayers more) to be likely to improve her quality of life.

It's not that I'm hard or unloving. If I could do anything to make my mother's current existence something more than a body going through the motions of living, I would. If there were any way to recover her memories and help her share them with the fourth generation, I'd be more than happy to sit with her for days and record innumerable audio hours to draw out her stories. The sad truth is: none of that is possible. She doesn't remember the summers she and my daughter travelled to all 50 states; she doesn't remember the house she and my dad built; she doesn't remember the college degree she earned after being widowed; she doesn't remember... anything. She's a decade past recovery. And on the Keppra, all she wants to do is sleep.

I have to wonder: Do we do our aged parents any favors by allowing medical intervention when there's NO hope for a life of quality? In centuries past, my mother's condition would have claimed her by now. She's on a dozen daily medications that didn't exist mere decades ago. She's got her second pacemaker. They've done every medical intervention possible, and still she can't resume a healthy, functional life. All we can do is hope that what the doctors are doing isn't a form of lingering torture for her; she can't express how she feels -- or what she desires.

We know it's fortunately not Alzheimer's but the reality isn't all that better. She doesn't know me or anyone else in the family, and she wouldn't remember you 2 minutes after the introduction. When she met her great-granddaughter, she was like a child with a new toy, delighted for a while but when the fascination wore off, that was enough. She loves to "read"  but only picture articles because the words while they register drain off as easily as rain, with as little lasting impression. A visit may get her up and about for a few minutes, but then she needs double the time for recuperation. She fills her days with hours in her chair, eyes closed, doing nothing. It appears very Zen, with no ego -- but also with no awareness.

My dad went walking with my mom one morning shortly after he retired. While mom was showering, he collapsed and died. She never finished grieving his loss. Thirty-some years later she's still waiting for her chance to follow. My grandmother endured a similar 30-year hiatus.

I'm in that 30-year window now myself, but I refuse to experience the same lingering wait. I want to be fully functional right till the end, still learning and growing and contributing to life on the planet. But when my responsiveness has run its course, I don't want medical interventions and medical treatments and medications to take away my time to die.

Will my mom have a happy birthday today? Who knows? I'm not sure even she has a clue what's behind the bland smile and vacant expression that's all the world can see. I wish blowing out another round of birthday candles could make Mom's happily ever after come true and let her value living another year.

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