Dementia - They Don't Tell You These Things ~ a tough & essential read

I go down on my knees neither John nor I had to deal with the realities discussed in this soul-searing article about an all-too-common reality for way too many.  One of the reasons I'm pledged to be there to do what I can for those, on all sides of the experience, who are. 

Observation - it feels like folks in the UK are more open to discussing the heart-ripping realities of aging than here in the USA.

Dementia - They Don't Tell You These Things...  by Dawn Vance, Daughter, Sister, Girlfriend, Teacher, Carer, Drummer, Cynic

As an editor, am impressed that Dawn doesn't reveal until the very end her mother's age.  Left me slack jawed.  

6 Steps to Rise Above Your Fear of Death - Karen M. Wylie, M.D.

Heartfelt thanks to the amazing Erica Goldblatt Hyatt for discovering & sharing this invaluable article!  

The first thing that struck me about the article was at how sentimental I felt reading Dr. Wyatt's observations & suggestions - reminded me so much of my experience with Mom.  Mom & I did look ahead to her way-down-the-road departure.  We were both all too aware how swiftly death can come, at any age, so discussions touched both of us.  We were blessed to be raised in a faith that presents death as a doorway.  We were both open to discussing every aspect of death and - more importantly - dying.  Every aspect was considered - and those talks, which started four years before her tumble, stood us & our family in very good stead.  Reading this article, kept wishing Dr. Wyatt could have met Mom - they would have hit it off, I'm sure!

The six steps are simple, yet easy for people to not think about:
1. Think about it. 
2. Write about it.
3. Read about it. 
4. Learn about it.
5. Talk about it. 
6. Work with it.

Now that you've read the six steps, read the article.  Seriously.  Now.  A few moments of your time will - no doubt in my mind - make a huge difference in your life, perhaps in many lives.

Let me add two steps.  Work through these steps with another person.  Along with reflection & contemplation, the work calls out for discussion & collaboration.  If my brothers & sister could have made themselves available, they would have been included.  I doubt that what we ended up with would have happened working individually.

The other step - where Dr. Wyatt recommends volunteering to work with hospice or palliative care patients, my urging is to expand your circle of older friends. Up through my young adult years, the local ladies in my hometown put on Friday Supper, where almost all of the adults - from teens to great-grandparents - gathered together for a yummy communal dinner.   Each generation followed the same pattern: very elderly in the front rows, working their way back through the elderly to upper middle age, then to the lower, to the young marrieds, to the college guys & gals, to high school kids.  (Friday Supper was a gold mine for upper elementary school girls, who babysat while Moms & Dads got a nice night out on their own.). 

Alas, Friday Supper is long gone.  My generation was the last to grow up knowing - some by sight, some more closely - a range of adults unimaginable today, even in my little hometown.  How could I fear death when I'd seen so many olders living & dying well?  To reduce your fear of death, expand your circle of older friends.  

More smiles - Dr. Wyatt includes a link to The Conversation, the topic of an April post on this blog.  (Have got do some more!) 

It's an excellent article, but leaves out the one step that (in my opinion) is the most important - to rise above your fear of dying, live life well.  Live this moment & the next & the next as well as you possibly can.  Then, death will only be another moment.    

post script -  Am adding another book to read, ideally together with a loved one - Living With the End in Mind.   It was published the year after Mom & I began our own conversation and two years before she was reunited with her O Best Beloved, yet I didn't find it until years after Mom's death.  When people are prepared in the practical sense for the unexpected, they tend to have fewer fears about the possibility.  This book was written by Doug & Erin Tierney Kramp, a young husband & wife, parents of a little girl, after Erin was diagnosed with cancer.  Their approach is life-affirming, practical & full of a grounded hope that good comes from everything, that everything is a trigger for good. 
 

not what we expected

This posting was going to be another look at Charles Dicken's great line, "It was the best of times, it was the worst of times," and a rehash of earlier ramblings on our present day being the best time to be aging & the worst time to be dying. 

Then I looked up Dickensian, which I wanted to use but wasn't 100% sure of its meaning.  Astonished to discover the word, Dickensian, even more than The Tale of Two Cities quote, describes our present-day experience of aging, at least in the USA.  Strange, but true - it has two opposite meanings, context essential to understanding its meaning:

characterized by jollity & conviviality: a Dickensian scene round the Christmas tree

squalid & poverty-stricken: working conditions were truly Dickensian

 
That sums up pretty well today's Janus-faced experience of aging in America. We are living longer, more vibrant lives, but always with Damocles sword - the knowledge that dying in America is more emotionally & financially depleting than ever - dangling over our heads.  

Aging in America is Dickensian in ways I never imagined.  It's characterized by more active young-old adults who are fitter, more mobile than any previous generation.  And by a culture that struggles with how to respond to the growing number of the dependent, unwell & the dying.  

Our cultural short-sightedness left us with an aging & dying dilemma we never saw coming.  Even now, it's tough for even experts to put concepts & words around the challenges we face.  We were promised longer lives characterized by jollity & conviviality;  no one mentioned that dying could leave even healthy bank accounts & families exhausted.  


It's not what we expected.  But it's what we've got to face down now, to discuss, consider & address.  

Am feeling a lot better about those prospects after hearing James Wells, the new Interim Director at Rydal Park, speak on Wednesday.  He seems to understand the need for discussion, for looking the difficult in the face in order to find ways to address challenges which will only multiply over the next years.  

I get the sense James Wells is committed to increasing the possibility of all Rydal Park residents having some semblance of full-throttle living, whatever their circumstances, that he wants these to be as much the best of times for them as possible.  

James Wells boosts my belief that we can change our nation's Dickensian culture around aging, that we must face down what makes this the worst of times for too many of our elderly & their families, then do all we can to make BEST more & more the new national norm. 

Power of STORIES

Read a GoodReads review yesterday of Mary Pipher's, Another Country, expressing disappointment over it being so full of stories & not more clinical advice.  The reader/reviewer is correct - Mary's book is utterly personal, not perscriptive.  

Which is why it has such power for me.  It is a book of stories, of stories about Mid-Westerners making their way across the unknown terrain of aging.  

Yes, it is limited in scope because it doesn't sample demographics from across the country.  For me, it's power is in being what it is - a book written by a psychologist who lives & has established her practice in Nebraska.  It is what it is.  

Which is why Mary's stories, as simple as most are, have such power.  They are real, unpretentious, with no intent to present THE ANSWER(s).  Just to help show a bit of what is terra incognita for most of us.  

As I read deeper & deeper into the book, I am reminded more & more of Still Here, by Ram Dass.  His book also relies heavily on stories that illuminate rather than instruct.  Like Mary, he informs & expands our awareness of aging, rather than setting out steps to take to address growing old.  Which might seem a waste of time for anyone who wants a prescription rather than a better understanding.  But when we are heading toward an unknown country, one where we've never been & which we've heard some pretty tall tales about that leave us quaking, an overview, an impression of what to expect will do more for helping alleviate our fears than being handed a AAA road map.

“Those who tell the stories rule the world.” – Native American proverb 

 

A story well-told goes beyond informing - it helps the listener & the teller appreciate what is being shared.  Of course, every story is limited by the story teller's particulars.  

Mary Pipher writes from the soul of a woman raised in the heart of our country, whose large extended family touched & touches her life in so many ways, who got her under-grad at UC/Berkeley & her PhD at the University of Nebraska/Lincoln, whose clients are mostly Mid-Westerners, who brings a trained psychologist's eye to everything she sees & experiences.  

Ram Dass (Richard Alpert) is Boston born & bred, attended a toney private school, got degrees from Tufts & Wesleyan & Stanford (his PhD, also in psych), taught at UC/Berkeley (!) then Harvard,  was dismissed due to encouraging his students to use drugs, traveled to India where he received the name we know him by best - all of that informs influences infuses his stories.  

I am a small town girl with a degree from a small town college living in a small house in a small neighborhood with a small but treasured circle of friends, all of which affects my story telling. And I believe that my stories contain the same power to affect any given person as Mary or Ram Dass.

It's true, my life experience is teeny compared to theirs - but they never knew Grandma Rose or Miss Cornelia, "Aunt" Gay or Uncle Paul, Benita Odhner or Hubert Synnestvedt.  They can't share their stories about them & the other epic elders that were my role models & mentors for lives well lived.  Those are stories only I can tell.

The ability to talk with & counsel oldsters - or anyone - isn't in my tool kit.  The loving willingness to listen, to be a friend, to share stories that might illuminate & possibly halve pain or at least shift burdens - those are things that I can do, things that are as much my strengths as Mary's ability to advise her clients or Ram Dass' ability to shed light for his readers.  

I am a storyteller.  They might be little stories, compared to Mary Pipher's & Ram Dass'.  But they are mine & they ache to be shared.  There is great power in that.  

 

“After nourishment, shelter & companionship, 

stories are the thing we need most in the world.”

Philip Pullman

 .

.  

pleasure to meet JAMES WELLS

It's always felt an honor that the Rydal Park Current Event's discussion group has made me feel welcome, but it was never more a pleasure than today, when the community's interim director, JAMES WELLS, stopped by.

He was not anything that I expected.  I'm not talking about what I saw or heard, but what I felt - my sense is that the man understands in ways it's hard to fake the depth & privilege of being where he is doing what he is for who he is.  And that seriously took me aback.  Was just not expecting it.

If I could have designed an executive director for a community like Rydal Park, someone who seemed a natural partner to Pastor Tom Summers, it would be the person who spoke this afternoon.  Will take a night to let what he said & shared steep in my mind & heart, then share more of my off-the-bat impressions tomorrow.  

Just the fact that the powers-that-be thinks this man would make a good head honcho at the community I love so well bodes well for the organization as a whole.  Looking forward to getting to know James Wells!  

(The fact he calls my beloved Hunterdon County home certainly doesn't hurt!!) 

 

a repost from dreamreweaver.blogspot.com 

 

The Poetics of Aging

It seems the topic of our significantly longer life span grabs my attention every couple months.  And here I go again!

Small wonder it intrigues me so much.  A shade over 100 years ago, approximately 100 infants died before age 1.  One of them was my Uncle Willie, who never saw his first birthday.  My grandparents suffered the heartbreak of watching their lactose-intolerant baby waste away, unable to save him.  

Babies weren't the only ones at risk.  For every 1000 live births, six to nine women in the United States died of pregnancy-related complications (2).

By the time my oldest brother graduated from high school, in the mid 1950s, the number of living Americans had increased due to reduced rates of infant & maternal mortality.  By 1970, when his baby sis got my diploma, our life span was increasing due to reduced adult mortality rates, thanks to medical advances & better education. Adults were living longer, soon long past their mid-60s, even their mid-70s.  

Today, the expected life span of a new born has been pegged by some as 100, with articles dangling the "promise" of living to 120.  

All of which leaves us on very unstable ground.  In The Poetics of Aging & Dementia, Nader Rober Shabahangi points out we're inexperienced with the core realities related to living significantly past traditional retirement age.  We've lengthened life expectancy while neglecting to change our dismal attitude against aging.  Old age isn't just as feared as ever, if seems to be feared more than before.

How do we embrace a longer life while holding tight to attitudes that devalue the very value of aging & old age?

An excellent read!

ANOTHER COUNTRY - definitely NOT prescriptive

Someone on GoodReads criticized Mary Pipher's book, Another Country, as more descriptive than offering the prescriptive advice the reader had expected.

That more or less describes all of Mary's books, which is probably why they've made such a resounding difference in my life.  She is a psychologist, but writes as if she is your friend, sharing insights culled from a lifetime of sitting across allegorical kitchen tables, having tea & conversations.  

Mary Pipher, PhD speaks like the non-professional that I am, which gives me comfort.

And how wonderful that she doesn't prescribe answers to our current aging dilemma.  No one, including Mary, knows what they are.  She would be spouting gobbly gook disguised as wisdom.  She sticks to vignettes because that's all that we have at this moment in time.  Stories.  And the insights that can come from them.

I felt for the reader.  Another Country is definitely NOT for people who are feeling "very, very, very, very angry and frustrated and as if they've been completely abandonded with two deranged, rabid animals while their siblings wave from a distance and say things like  'I'll be coming over to help soon' and then disappear into the mist."  That person (I presume the reader) needs serious help, and Mary makes no bones that her book comes close to filling that particular need. 

People will probably say the same thing when Gran-fam-boly! hits the bookshelves - "it doesn't give caregivers suggestions on how to encourage socialization for people with forms of dementia & Alzheimer's."  People these days often don't recognize, can't relate to gentle help & support when it's given, they're so exposed to extreme scenarios.

Another Country doesn't provide answers.  But it does provide context, illustrations, a sense of not being alone.  Last year, another reader grumbled that Mary elevates people who embodied "self-sacrifice above all. Those individuals who spent their lives taking care of others were lifted up as heroes in the face of their own lack of living."  The book was published in 1999 & focuses on people of my own mother's generation, the generation of my primary grannie clients;  by the tone & focus of the comment, my guess is it was written by someone my age or younger.  "In the face of their own lack of living" - I doubt Mom saw it that way. Mary, god bless her, explains in so many ways where that thinking came from.

Is Another Country in any way intended to be the final say in understanding the terrain that older people - especially the significantly elderly, the ones she calls the older-older - have to travel?  No how, no way, not what she intended.  But it's a darn good start, an excellent read. .  

People will probably say the same thing when Gran-fam-boly! hits the bookshelves.  Bring it on!