Novel thoughts.

From 2009-2015 I worked at writing a novel. In that time I managed to complete drafts of sixteen chapters. Not many for six years, but the writing group I belonged to encouraged me.

Then I ran into a writer’s block.

I’d never written fiction and hadn’t a clue where I was going with the book I’d finally titled But Why? What I wrote during that time seemed more like journal entries, a diary maybe, that began when my protagonist, Isabelle, was nine. Though fiction, my book-to-be doesn’t read that way. No conflict, no tension, no real plot. Stymied, I quit and decided to try writing a blog, my first. “Wherever you go, there you are”  attracted readers, plus a number of repostings on the Erma Bombeck Writers’ Workshop site.

There was another block too, a big one. It lurked behind dementia’s sweeping skirts. During the years I’d tried to write about Isabelle’s innocenceI acknowledged what I’d known all along—my  husband’s dementia diagnosis was actually Alzheimer’s disease (ALZ).

I began to stumble along a twisted path studded with potholes, hairpin curves and detours. Writing a novel, or writing anything at all, was no longer a priority. In fact nothing was prioritized except Peter. He was, and is, priority one. That previous sentence makes me sound as if I’m Clara Barton and Mother Theresa rolled into one. I am not. I’m short-tempered, frustrated, exhausted, confused, stressed, sad and angry a lot of the time, sometimes all at the same time.

What about an Alzheimer’s conflict in my novel-to-be? Why not?

When I accepted that Peter had ALZ, I felt as helpless as a leaf blowing helter-skelter in a storm. Writing and finding the right words is my therapy. Would another blog help? That thought morphed into this blog. The writing has helped me, and my words have helped others I’ve heard.

From the beginning of this long awful trip I read everything I could find on the types of dementia. Dementia isn’t a gentler type of Alzheimer’s. No, dementia is an umbrella word that covers several diseases, Alzheimer’s the most widely known of all of them. That’s noteworthy because ALZ, while not contagious, is an epidemic, the sixth leading killer in this country after heart disease, cancer, chronic lower respiratory disease, accidents and stroke. Of these, Alzheimer’s has no cure.

ALZ affects families in ways that other killer diseases do not. The loved one’s life is a chiaroscuro of lights and darks, sun and shadow, instant transformations from the former self to the self that is, in that moment.  There are drugs that can help—namely Namenda and Aricept—and various prompts to make daily life more tolerable for patient and caregiver: increase exercise, do crosswords, eat right, get enough sleep but not too much, call-the-doctor-in-the-morning, eat-an-apple-a-day, cross your fingers.

What works best for us is laughter, always the best medicine. Admittedly, it is extremely difficult, if not downright impossible sometimes, to find a reason to laugh. Luckily for us, Peter’s sense of humor hasn’t deserted him…yet. When I visited one day I set out a 100-piece jigsaw. We fiddled with this piece and that in the mostly red, black and yellow puzzle. Peter chortled when, predictably, clumsy me knocked the sorted piles to the floor.

“A place beyond words: the literature of Alzheimer’s” is an excellent piece by Stefan Merrill Block, The New Yorker, 8/20/14. The article both jolted and vindicated me in ways other books and articles I’ve read on the subject have not. https://www.newyorker.com/books/page-turner/place-beyond-words-literature-alzheimers

Header: Me stealing time to write early in the morning 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

There were thirteen from our group of  twenty-seven at lunch last week. We usually cause quite a ruckus, chattering and laughing the way ladies who lunch do. Wednesday was no different.

At one end of the table, four of the six of us talked about dementia, more specifically the dreaded “A” word, Alzheimer’s Disease.  What I’m experiencing with my husband now is only one view of what others have experienced with their loved ones.

After I got home I tried to remember how many of the thirteen had been, or still are, on the same one-way road I’m on. Seven! Seven out of those thirteen women have cared for, suffered with, and lost or are losing mothers, sisters, aunts, brothers, husbands. Three more in our larger group are affected in one way or another, too.

There’s no laugh in this post today nor in any of the grim statistics that fall under the umbrella of dementia. But there are these thoughts about the importance of laughter from the Central California Chapter Alzheimer’s Association newsletter:

“There is nothing humorous about dementia. However, laughter can help dementia caregivers and improve the quality of life for those afflicted by the disease. Studies show that laughter boosts the immune system and triggers the release of pleasure-inducing neurochemicals in the brain. In terms of dementia-specific benefits, the greatest advantage of humor is that it provides sufferers with much needed mental stimulation. Humor challenges our loved ones to engage their minds as fully as possible [and] it’s also an effective tool for keeping social links active and reducing…paranoia and agitation that many […dementia patients struggle with.]

— Marcy Oswald, MFTI, Education & Care Specialist

 

2016 National Society of Newspaper Columnists’ contest finalist. screen-shot-2016-12-07-at-10-14-53-am

 

 

There’s always hope.

The Longest Day™ is a team event to raise funds and awareness for the Alzheimer’s Association. Held annually on the summer solstice, [June 21, 2015] the duration of this sunrise-to-sunset event symbolizes the challenging journey of those living with the disease and their caregivers. Carolynn Lyman of the Cancer Program is leading the ‘Poppy’s Hope’ team.
— Announcement in Faxton-St.Lukes Hospital newsletter, Utica, NY

I’d planned to organize an event for The Longest Day ™ this year, which coincidentally, is Father’s Day…tomorrow. But a couple of nasty bugbears, Stress and Anxiety, got in my way and totally discombobulated me for a time. It’s been said that the caregiver’s days are 36-hours long, and I believe it, even though Peter and I are “lucky” because he’s not in as bad a shape as some are…yet.

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‘Poppy,’ Carolynn, me, May 2015.

Carolynn picked up on the thread I’d dropped and started “Poppy’s Hope.” As it turned out, she didn’t have time to organize the golf tournament she’d dreamed up, so she went for a simple Facebook announcement and got a write-up in the hospital newsletter where she’s the Radiation Oncology Charge Nurse.  Though only up for a short time, her site has raised more than 535 dollars.

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Purple streak.

Then, Leslie got in on the act too by posting a photo and a plea — “Wear purple for Peter” — to her Facebook page. I’m not an enthusiastic Facebooker, but I changed my profile and header photos to show the purple streak in my hair and my purple sage. Purple is the Alzheimer Association’s color.

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Martin, left, Peter, me, Leslie, April 2014.


Every day is the longest day for Dementia sufferers. 
In the inaugeral year, 2012, The Longest Day™ events raised 236 thousand dollars and attracted more than 635 partcipants on 200 teams. Now in its third year, teams are as varied as the participants. Activities range widely, from playing contract bridge, quilting, and gardening, to golf, volleyball, walking, cycling, dancing, and fishing, to name a few.

Yesterday, I received a thank-you letter for the check I sent to the Alzheimer’s Association in lieu of organizing a team activity as I’d intended. A paragraph at the bottom reminded me of something I already knew: Alzheimer’s is the sixth leading cause of death in America and the only one among the top ten that can’t be prevented, cured or even slowed significantly. In Virginia alone, 130 thousand people, aged 65 and older have the disease. Worldwide, the number of Alzheimer’s and related dementia sufferers is a staggering 44 million!

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The desire of sage is to render man immortal, according to a late medieval treatise. The sage plant has been praised highly throughout history for its power of longevity. Sage, L. salvia,  means to be in good health, to cure, to save.

If I thought it would help, I’d roll Peter in sage, sprinkle it on his pillow, and rub it behind his ears!

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My sage is a huge plant that I moved to Virginia from our garden in upstate New York 17 years ago.

 

Dementia: ‘Auld acquaintance be forgot, never brought to mind.’

Snapping, sparkling fireworks went off in my head when the WordPress 2014 annual report for this blog arrived. I just started “Dementia isn’t funny” five months ago, so mine isn’t really an annual report, but I’m thrilled to have statistics to be reported upon! Woo hooo.

My December 26 post, Times change… years go by , caused too many tears, so I’ve resolved to start 2015 off with words that underscore laughter — laughter helps Peter and I through our days, some good, some bad.  There are lots of people who endure situations way worse than ours, so giggles should be my focus. Everything is better when dosed with laughs.

Laugh anytime.

Laugh anytime.

The WordPress report begins with this excerpt:

A San Francisco cable car holds sixty people. This blog [mine!] was viewed about 1,600 times in 2014. If it were a cable car, it would take about twenty-seven trips to carry that many people.

C’mon, 1,600 times? Really?

“Laughter layered with despair,” my first post here, has had the most views and the most comments to date, though the title doesn’t seem to promise laughs, does it?

My daughters, Carolynn and Leslie, Carolynn’s husband Bill, her friend Robin, and my longtime friend CJ rate a big thank you for being my most active commenters. And thanks, too, to other family and friends who have urged me on.

Live. Laugh. Love.

Click here to see the complete WordPress report.