Death loosens its spectral grip

No, am NOT getting kick backs from the NY Times for leading my readers to its articles!  Can’t be helped, with some of the best writers on living expansively issues on staff.  All hail Paula Span & John Leland, with a special place in my heart for two Janes –  Gross & Brody!

Going analog – at home – is a whole new world for me, especially on the weekends, when our local libraries cut back the amount of time someone can fritter… I mean spend on their computers.  Assigned 40 minutes yesterday, so didn’t dig deeply enough into my digital subscription to find John’s article on America’s changing attitudes toward death.  Praise be, he has a dandy short piece in today’s issue, spotted while perusing the print edition this a.m. at Be Well, my beloved café/away-from-home office.

In Sunday’s lengthier piece, John discussed attending Shatzi Weisberger’s FUN-eral.  As the 88-year old former nurse explained,  “I have been studying and learning about death and dying, and I want to tell people what I’ve learned.  Some people are coming because they love me, and some people are coming because they’re curious about what the hell it’s about.”

John was there because covering a revamped/revitalized funeral was a natural build on three years of becoming friends with & writing about a variety of seriously-old (85+) New Yorkers.

The centerpiece of the standing room only party, held in the commons room of her Upper West Side apartment?  A biodegradable cardboard coffin on which enthusiastic guests were writing greetings, from  “Go Shatzi! (but not literally)” to “Shatzi, many happy returns … as trees, as bumble bees, as many happy memories.”

At 88, Shatzi has become a prominent voice in the “positive death movement.”  My heart leapt at the description – didn’t know there was a movement to describe what I experienced seventeen years ago with Mom, three years ago with my sister Mim & even with Dad, who died in 1973 before the first wave of integrating more humanity into death & dying yet still held a remarkable attitude toward what he was experiencing rather than crumpled & devastated at the prospect of dying at 62.

Shatzi & her “Go, Death!” compadres speak to my concern that American culture finds death to be icky, a topic to be avoided rather than embraced, resulting in a silence that diminishes the lives that lead up to it. 

I think about my oldest brother.  After decades of a relatively distant relationship, they became close over the last twenty years of Mim’s life.  But he still has not seen her online memorial service – the first of its kind in our church, inspired by the unescapable fact that the best minister to capture my sister’s unusual persona was retired & living in Arizona.   I can’t understand WHY Peter has yet to see it, but he hasn’t.  Which is too bad, since it is a wonderful collaboration,  a heartfelt tribute to a creative & complex spirit.

Schatzi would understand the inspiration behind Mim’s tribute, honoring a woman who exited this world cracking up hospital staff who’d swing by for a visit if they felt down in the dumps, knowing that a patient facing death within days would make them smile at her jokes & feel awed by her “bring it on!” attitude.

More & more people feel like Ms. Weisberger, who simply got fed up with Death American-style after sitting with a dying friend who was was so terrified at the prospect of her death, “she couldn’t even talk about it…  And then she died.  So that was a problem.  We had not dealt with the issue – myself, herself and the others.

Schatzi Weisberger used her FUN-eral to educate her friends about having a positive death experience.  She showed them the burial shroud she plans to have cover her for burial (she considers cremation to be environmentally unfriendly), which she got from Amazon.  Friends have agreed to was her body, in keeping with Jewish tradition, and another will bring dry ice to preserve it before burial.  But she assured one & all that she’s in good health, good spirits, and will wait her own good time to have the good death for which she has so carefully prepared!

Schatzi Weisberger does have a final wish – “I really want to experience my dying.  I don’t want to die in a car crash or be unconscious. I want to be home, I want to be in my bed, I want to share the experience with anybody who’s interested.”   She doesn’t expect death to take her hand in a spectral grip, but with a friendly touch.

 

The concept of self-neglect hits home

Yesterday, Paula Span’s New York Times article on elders’ self-neglect hit home, big time.  My sister, my older brother & even I struggled with self-neglect.

My sister almost died – twice – due to ignoring her own care; perhaps the tumor that killed her could have been treated had she let people know the pain she was in.

My brother ignored his own symptoms, fearing cancer, not seeking care his body clearly needed until others intervened.  (It wasn’t cancer.)

It’s true that I also neglected to get care for ominous symptoms, but I did not hide them  from John or even my doctor – I didn’t have health care coverage, so couldn’t afford the expensive testing necessary to diagnose my condition.  Both Peter & Mim were covered under Medicare.  (It’s a goiter & being treated.)

But I hesitate to call self-neglect a form of self-imposed elder abuse waiting to be addressed.  “We hear much more about other kinds of elder abuse and exploitation. Perhaps it’s easier to respond when someone is being victimized by others than when he is harming himself.”   Self as abuser & exploiter, someone to be held somehow accountable?  Hard to wrap my head around that.

I am a mega fan of Paula Span’s The New Old Age feature, but this one is just, for me, so far off the mark.  It seems absurd to bother writing, “People who neglect themselves have higher rates of illness and death, of emergency room visits and hospitalization. They’re more apt to suffer other forms of elder abuse as well.”  Duh – yeah, people who don’t take care of themselves ARE going to get sick more often & die when care could have saved them.  And they’re more likely to put up with abuse from others.  Not surprising.

I get that Paula is driving home the point that self-neglect can be as deadly as abuse by another person.  But the piece is all over the place.  For example, the person she talks about who wasn’t taking care of herself – – turns out she WAS being abused by her children, who were selling the OxyContin she’d been prescribed.  And restoring a person to good health isn’t necessarily solving the problem – witness the guy who got back to such good health after a month in the hospital, the courts declared him fit to make his own decisions & he restocked his home with the liquor that helped land him in the hospital in the first place.

Here’s what I would say, were I writing an article on the very real horror of self-neglect:

  • I want to write “If you are prone to self-neglect, seek help,” but I realize that most people who suffer from it are the last to acknowledge it.  But here goes, anyway – – If you think you are self-neglecting, seek help, starting perhaps with a counselor, with a pastor, with someone who recognizes that it is an emotional problem as much as it is a medical one.
  • It is very hard to loved ones & friends to spot, much less do something about it.  My brother was living in a van in the middle of a Pennsylvania winter, but the rest of the family didn’t know it.  (A lot easier to get away with these days, thanks to cell phones.)
  • There’s very little that others can do.  How do you force siblings or a parent, a neighbor or friend, to take care of themselves, short of institutionalizing?  Since family matters are often at the bottom of self-neglect, it can be dicey for family to try to address it.
  • Do all you can.  John & I had our hands tied, because neither Peter nor Mim wanted to have any contact with us, so we couldn’t invite him over to dinner or take her out for meals, which would have possibly have given us glimpses of how they were really living.  The two of them called each other regularly, but that was like the Titanic being in contact with the Lusitania.
  • Understand that self-neglect is far from limited to olders elders ancients.  Peter & Mim suffered from self-neglect throughout their younger years.  Could my parents, could I, could anyone have reached out & helped them?  While self-neglect is occasionally as simple as a lack of health care coverage, more typically it’s rooted in low or no sense of self-worth.
  • Don’t beat yourself up if you aren’t able to turn the person around.  Do what you can, hold their well-being in your heart & look for opportunities to help, but understand that you don’t have super powers.

As one article notes, “One could argue that the damage we do by neglecting ourselves is far more substantial than whatever neglect we experience from others.”  I can see that in my two sibs, especially in Mim, who openly believed that she wasn’t deserving of happiness.  How better to deny yourself happiness than to deny yourself health?

In the end, I agree 100% that self-neglect is typically a form of self-abuse.  Where Paula & I part ways is in thinking it is limited to olders elders ancients, that family & friends can successfully intervene, that there are viable ways to handle someone who is destroying himself or herself through self-neglect.

AND  I think it is a topic that needs to be openly discussed far more than it is, for which I thank Paula Span.  Dear friend-I’ve-never-met yet long-admired, will take your topic & see what I can do to use your words to start a deeper broader wider conversation around  self-neglect – – how to spot, how to address, when & how to intercede, how to cope with helplessly not being able to help.   Thanks thanks & more thanks!

Not so casual casualties of a looming direct care crisis

My drive home from a yum early birthday (tomorrow, but the weather forecast is nasty) breakfast turned out to be even meatier than my meal – intriguing listen on The Takeaway, a build on Paula Span’s 02/02/18 NY Times article, If Immigrants Are Pushed Out, Who Will Care For The Elderly.

Strange  – both the article & the radiocast  focus almost exclusively on how the crackdown affects the elderly,  yet Todd Zwillich‘s guest, Stephen Campbell, off-handedly mentions that HALF of direct care is provided to people under 65, aka the NOT elderly.

How weird that – in this situation – youngers seem a huge yet forgotten demographic.

It’s true that Boomers  increasing trip into young old age. They will need considerable support – in time.  Down the road.  BUT the worries of how immigration crackdowns & reduced legal arrivals will affect available direct care support hits youngers RIGHT NOW, whether they face disabilities as long term as cancer or as short as knee replacement.

And let us never forget the men & women returning from wars abroad, needing more & longer care than in previous engagements.

Am still stunned at hearing Stephen Campbell say, “Well, currently, according to the most recent estimates, about half the people who require long-term care are under the age of 65, but as time goes on & Baby Boomers continue to age into older adulthood, that population of older adults will require care.”

Please, excuse me while I take a moment or two to scream out in frustration:  “AAAARRRRGGGGGHHHHHHHHHHH!!

Am shocked appalled horrified to hear younger people – half the population currently receiving long-term direct care – so casually brushed aside.  Especially the seeming endless stream of young men & women returning from Iraq & Afghanistan facing a LIFETIME of care for physical & mental wounds, needing home health care.  And let us not forget the countless young lives mangled in the current opioid epidemic, which has claimed 64,000+ lives due to overdoses & left millions addicted; the recovering survivors need medical & psychological services  ~and~ often direct care support.

The impact of the immigration crackdown & reduction of  new arrivals will take its toll across all ages, from the child diagnosed with Down Syndrome to the high school athlete suffering a life-changing injury, from the NFL player entering his forties with  chronic traumatic encephalopathy (CTE)  to the 52-year old suburban dad fighting to overcome addiction.

This blog is called All Ages, All Stages because John & I do all we can to help people across the age spectrum, from itty bitties to ancients, live as expansively as possible.  The frustration we feel when older people are invisibled pales compared to my bottomless outrage at how a drop in direct care support will affect babies – tweens – teens – young adults – middle agers.  I want to howl at the moon & shriek with outrage.

My guess is that youngers are ignored because their dilemma cuts a little too close to home.  It’s easy to think of the elderly as needing home health care support;  to think of  thirty-somethings needing their daily needs met by others cuts t0o close to the bone.

Let me repeat again, NOT so casually – “According to the most recent estimates, about half the people who require long-term care are under the age of 65.”   And HOW does the link address describe the article?   “trump-immigration-policy-hurts-eldercare-home-aides.”

NO – every age of American, every demographic & every race color & creed are the not-so-casual casualties of short-sighted leaders taking wrong-headed actions, collateral damage in “making America great again.”

Gotta run – gotta go out & howl at the moon.