R.L. SAUNDERS

writer attempting real life in the middle of everybody else's vacation

GrAttitude (or, same title I use every year around this time)

I haven’t done the 30 days of thankfulness thing, and I’m not doing NaNoWriMo (www.nanowrimo.org). The pressure squelches my creativity, or something.

But I am still writing. And I’m grateful for lots.

For example, I’m grateful for my kids’ teachers, especially the preschool teacher. You couldn’t pay me enough to do that job. Preschool is one huge festival of snot, from my perspective. But there she is, day after day, smiling and welcoming our little boogereaters as the smell of bleach wafts disinfectingly through the doorway. Her attitude is good, too, which is weird. I can only assume she’s thankful for the killer immune system our mucus-leaking angels are helping her build.

Speaking of attitudes, I’m grateful for my family. The writing and publishing process is just plain slow, with no promise of a payoff outside the satisfaction of a job well done. So, we live on one income for now, and these people never complain about what they sometimes go without. I’d like to take credit for the good attitudes around here, but you’d call bullshit on that right away. Their dry senses of humor and ill-timed sarcasm, though? I take credit for those. All day.

Oh, and I’m grateful to live in Key West. I’ve done a lot of whining about it, especially after that one hurricane (not even going to say that bitch’s name) took most of our worldly possessions several years ago. But they call this island “paradise” for reasons that aren’t lost on me. I’d try harder to articulate it, but as cliché as it sounds, I think you just have to be here to understand. Suffice to say that it’s less about the ocean and the perfect winter weather and more about the sorts of people who make this place home. It’s the attitude with which they approach life.

Maybe east coast people affected by Sandy are feeling equally smug and lucky to be  living among such awesome neighbors. And rightly so, from what I’ve heard about communities pulling together up there. Talk about good attitudes.

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Short of a cure, hoping for death

Maybe I shouldn’t blog when I’m pissed and sad, but here goes.

Alzheimer’s is worse than death. When I heard people say that before, it made me think they’d never experienced the death of a loved one. But I get it now. My father-in-law, Ben, is in the final stage of the disease.

This week, my husband and mother-in-law, Jeannette, brought him home after two weeks of “respite care” at the local nursing home, where the staff failed to provide even basic care for him. Jeannette asked me not to divulge the most personal lack-of-care issues, but there were many. And if family hadn’t gone in to feed him, he wouldn’t have touched the food trays that were left in his room for him to stare blankly at before they were removed. More than once, he was found in the fetal position on the floor with wounds on his face and body. Did he do it to himself? Who knows.

The only thing they were really, really good at was giving us reports about how violent and difficult he is. Yeah, we know. But silly us, when they agreed to take the thousands and thousands of dollars for the stay, we assumed they knew something about caring for late-stage Alzheimer’s patients. Or at least knew how to give a bed bath. Nobody found any respite, whatsoever, in that experience.

Thankfully, he is home and receiving Hospice care until a spot opens up for him at a VA facility on the mainland. But honestly? I wish Ben the timely, painless, dignified death we all know he’d beg for right now, if he were here.

Ben was a remarkably smart, creative, kind-hearted, and fiercely loyal husband, father, and friend. He lived and breathed for Jeannette and his family. There is no chance for recovery at this point and he has been involved in every experimental program to which Jeannette could get him accepted. To say that she’s done everything possible makes me feel like I’m minimizing her efforts to save his life, but I’m trying to keep this post brief.

Before this, I couldn’t imagine anything much worse than losing my partner to death. But now that I’ve seen my mother-in-law grieve the loss of her husband and work around the clock to maintain his body, all while trying to keep herself safe from things the disease makes his body do, I have a different concept of worst-case scenarios.

I am positive Ben would find a way to end his physical existence if he had any concept of what is happening. And I don’t care how gruesome that sounds. If you’ve been here, you understand.

In the meantime, though, Jeannette doesn’t sit around feeling sorry for herself. In addition to the draining, full-time care of her husband (while dealing with her own increasingly debilitating post-polio syndrome), she helped start a local support group for caregivers. She also worked hard to get a nationally renowned speaker (Pam Powolski) to Key West because she wants our community, especially medical professionals, to be better informed about the realities of working with Alzheimer’s patients.

I think Jeannette is pretty awesome for caring so much about this issue in our community even though it’s really too late for Ben to benefit. The support group meets on the 2nd and 4th Thursdays of the month, 5:00-6:30 p.m. at the Visiting Nurses Association, 1319 William Street, Key West. All dementia/Alzheimer’s caregivers are welcome.

Alzheimer’s disease is the sixth-leading cause of death, affecting 1 in 8 older Americans. It’s the only cause of death in the top ten that still cannot be prevented, cured, or even effectively treated. Please support Alzheimer’s research.
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