Thursday, October 19, 2017

Devils Dance in the Woods








Devils dance in the woods
But I camp in the desert
With water.

Monsters strode from the closet
But I dreamed them away
With books.

Demons stole the food
I showed them my claws
And made them cook.

Evil lurked in the lake
While I stood on the shore
Averting my eyes.

Love ran away
So I sent it a love note
In a bottle.

Happiness drowned in quicksand
But I hid a piece
In ice-cream.

Lions ate the bones of friends
I write about before
Those teeth took.

Hell burned in far off places
Yet I had glitter
And stickers.

Robbers took the money
But I have
A gold card.

Death torched the fields
Missing my pot
Of daisies.

Pestilence bit little children
I hid mine among
The bluebonnets.

Hope went extinct from global warming
Except in my museum.
It's air-conditioned.

The sun went supernova
I picked a star
We danced.

All politicians were abducted by aliens
I appointed my dog
King of the world.

Music got wiped by an EMP
Now my ipod is 
The world's DJ.
(I hope you like Queen.)



Friday, October 13, 2017

Seekerville


S.R. Karfelt, dementia, alzheimers, Gummy
My Seekerville GIVEAWAY
An herbal tea tin
Cookies & Chocolates from STONEHENGE!




Goodness it has been madness here between books, babies, and taking care of Gummy! Today I'm over at Seekerville though!



Swing by and say hi! I'd love to hear from you.



Plus, a truly lovely giveaway!



Also, NOBODY TOLD ME love in the time of dementia is on super sale over on Amazon. In HARDCOVER at half the price of a paperback. Follow this LINK to check it out!



Seekerville: Inspirational Romance Writers

Monday, September 25, 2017

The Glass Castle and Writing A Memoir



Memoir Writing, The Glass Castle, Non-Fiction, Writing Memoirs
The Glitter Globe/S.R. Karfelt

The Glass Castle by Jeannette Walls is one of a handful of spectacular memoirs I've read. I read it years before I set out to write or even planned to write Nobody Told Me love in the time of dementia 

I planned to write a memoir about the exact time I started writing it.


There were moments after I'd agreed to write the book that I stared at blank pages in utter terror, wondering if there was a step-by-step program somewhere explaining memoir rules. In the end I decided to make my own rules and took with me only a feeling or a flavor that I wanted to infuse into my memoir. It's not something I'd found in The Glass Castle

The Glass Castle isn't even my favorite memoir. I prefer humor to temper painful realities. Trevor Noah's Born a Crime is my favorite, and Shonda Rhimes' Year of Yes is a close second. 

What I loved about The Glass Castle was the brutal honesty. That's something I've always admired. It takes courage and inspires.


When I set out to write my memoir I did it the way I do most things in life, by the seat of my pants. If that sounds like lack of preparation, I'd counter that that's an assumption. I prep while diving into the deep-end and I figure things out. It works for me. When I first started to write fiction novels, I opened up a blank journal and a new document and began to write. 


My only guideline was to tell the truth. My truth. 


I simultaneously read articles and books and talked to publishers and figured it out. Flying by the seat of your pants is not for everyone, but I'm a hands-on learner.


With each new book I find that the process works best if I write with no filters from start to finish. 



Then I go over it again. (And again.) (And again.) Each time I go over the manuscript I add and take away. I fluff out scenes, and tie loose threads together. I clean the book up and watch for unexpected opportunities to expand on a theme.

As I wrote my memoir about my mother-in-law and dementia and all the memories we've shared, I pulled out my blow torch of snark and dusted off our funny stories and got to work. Writing the book while simultaneously watching Gummy tackle dementia every day was painful. I cried a lot, but I laughed too. 

My goal was to spread our stories out and take a good look at them while I shared them. I wanted to share this lovely lively soul I've spent so much time with. I didn't want to leave readers destitute and scorched by dementia, because f*ck dementia. Life isn't about dementia. It's about loving through all the shit and enduring the best we can.

That is why I loved The Glass Castle so much. Despite having neglectful parents and a growing up without the things we find vital in our nice first world country, Jeannette survived. She went on to have the best life she could.

What I found mandatory to writing a memoir is unvarnished truth. There were many revisions to Nobody Told Me. Each time I went through it again I asked myself these things:

  • Is this exactly what happened?
  • How did I feel?

Those were the two most important truths. That is the skeleton of a memoir. As a writer those were the things I couldn't doctor up or change. I had to be honest, and with each revision to the story I added more truth. I can't know for certain what other people were thinking. I saw what they did, and I heard what they said, but even dialogue made me nervous. I'd dug through decades for this book. I couldn't always remember verbatim every word that was said.

That's why I wouldn't put my dialogue in quotation marks. That worked fine for everyone except the poor guy who had to format the book to my exacting specifications. Getting everything together with revisions, rewrites, edits, and formatting took nine months exactly. I was in the deep end that entire time and pulling lots of sixteen hours days and night writes. It wasn't easy and it wasn't pretty, but I've never been more satisfied with a book.

My only outline was that flavor I wanted to infuse through the book. The one I got from knowing Gummy all these years. It tastes a bit like hope, humor, and orange zest.


My guideline for memoir writing is what works for me. That's not going to work for everyone. We all have different experiences, different stories, different philosophies, and different voices in our writing. For instance I don't think that Jeannette Walls tells us once in The Glass Castle how she feels. We can tell, or we think we can, but it works beautifully in the book.

Recently a reader told me the same thing. You never told us how you felt.

There's a reason for that. I showed you my truth, my thoughts, my actions. After that it's about how you feel. 

I don't think that the writer should ever tell the reader how to feel. 


Searing stories are difficult to write. They're also tough to read. I think that The Glass Castle was written exactly as it ought to have been. It's my opinion that if Jeannette Walls had told us how she felt about the miseries she endured, the book would have never been finished. Likely she'd have been holed up with a therapist or a bottle of whiskey as she relived it deeply enough to share those feelings. And I doubt we could have handled that truth anyway. 

When it comes to writing memoirs you have to tell your own truth in your own way. Your story. Your voice. 


There will be blood.


After it's written with all the bloody truth you can slather into your manuscript, then you go over it. I looked for these problems first:


  • Revenge. That's any story I told to avenge injustice against either Gummy or myself. It was so deliciously easy, and every word of that crap had to go.
  • Exaggeration. Everything had to be honest.
  • Other people's stories. It took concerted effort and focus to keep other people's stories out. Nobody Told Me works because I stuck to one main story. My relationship with Gummy. It's about a daughter-in-law's journey for better or worse. In our case that plows right into the crack of dementia. 
  • Other people's personal details. I changed names and locations to protect Gummy's privacy and periphery characters, because these are real people. 
  • Things that may or may not have happened that could or could not have resulted in legal trouble. I may have had to file down small details on the advice of my publisher and editors. I'm not saying that anyone said I could wind up in jail, but I'm not saying that they didn't. Just write the truth, then at some point go over it with a lawyer's eye if not the entire lawyer.

Raw truth is always best. It's just not a bad idea to double check statues of limitations if you're talking about anything shady. Imagine if Jeannette Walls had written her memoir when she left home at seventeen. Let's hypothesize she even got it published then. Would there have been any fallout about her parents? I imagine there would have been. 

When do you temper facts?


You don't, but you don't have to include every inflammatory detail if it doesn't serve the story. Only the writer can determine that line in the sand. It's something to think about, but not until you've written the bald truth all the way through to the end and you're up to your eyeballs in re-reads and re-writes and more and more edits. 

As I went over and over Nobody Told Me, I'd read it imagining how Gummy would feel about it, if she'd have a miraculous recovery from dementia. I also read it imagining how Gummy might have felt if she'd read the book before dementia, and she was reading about someone else.

The reason I did that wasn't to edit out painful details. I left those in. I did it for another swipe at the truth. When I saw the book through the eyes of Gummy, it gave me a new perspective. If I was putting in her ugly truth, I had to put mine out there too. 

That's how I knew I was at last finished with combing over the book. When I read it trying to see the story from Gummy's eyes and I didn't change a thing, I knew it was finished.

The writer truth is we own our stories. Freedom of speech permits us to share them. Honor and love demands we tell those stories with honesty, candor, and no hidden agenda.


Isn't the physicians' motto Do No Harm? That's not the writers' motto. But my personal writerly motto is Do No Harm Unless that Hides the Truth.


Only you can determine your own motto.

After all the hard work, I can stand comfortably beside my memoir. There are always criticisms of a writer's work. I've seen entire blogs written dissing on The Glass Castle. It's interesting to me because these are the stories of someone's truth. It seems that if anyone doesn't approve of your truth, that's kind of their problem. 

So if you're writing a memoir, I wish you all the best with it. If you have some tips, questions, or comments I'd love to hear from you. If you have criticisms, fire away. They might not have any power here, but I'd like to hear your truth.









Friday, September 22, 2017

Six Things Writers Need to Bring to a Book Signing


Writing, Book Signing, S.R. Karfelt, Nobody Told Me
The Glitter Globe/S.R. Karfelt



A few years ago I joined Toastmasters. I thought it'd be a good idea to brush up on speaking techniques for book marketing purposes. It seemed that every writer conference I attended was full of communications majors and I found myself lacking. Although I'm not shy, I do tend to speak just like I write—with a lot of thought, an explorers mentality, and an occasional meander down a rabbit trail. It's never a problem with the written word, thanks to rewrites and editors, but during a speech I didn't think it would work. 

Toastmasters is wonderful. I loved every meeting. In fact I'd about made up my mind to go to the international convention that year in Kuala Lumpur.


That's why I quit going. It took time away from writing and I found myself losing focus. Writing takes a lot of time, and I find protecting my writing time to be one of my biggest challenges. Since I write without any real outline, because I like to surprise myself as well as the reader when the story unfolds, it takes me a bit longer to write a novel. I still make my deadlines thanks to obsession and night writes, but I don't have time or resources to go to Kuala Lumpur, workshops, research trips, and write a book once or twice a year. 

In order to write I've had to give up things like television and a social life and cleaning my house. 


What I've found is that I don't need to be a communications major when I talk to people. I need to be genuine. It's about the readers, not me, and fortunately I'm a good listener. I'm an introvert but I love everyone one person at a time. I like to hear their stories, what they're reading, and what they have to say. So I ask questions, and listen, and when I'm asked a question I simply answer it. Honestly. 

Since I do spend an inordinate amount of time in the total immersion that is my writing style, I'm thrilled when the opportunity to chat with someone comes up. If we're going to be talking about reading or my books I'll be somewhere around seventh heaven. 

Tomorrow I have a book signing, and I've already packed up all the things I want to take with me. I wear one of the writing t-shirts I love and comfy pants that aren't in the least bit flattering. But this is me, and I need pockets for things like pencils, a pencil sharpener, a little notebook, and my phone, because even if I love to write with pencils I am into tech too.

My goal is to be approachable. Let's chat. I really do want to know what you're reading because I like to read too!


Since I wrote my last book my husband has taken to saying things like, "You look like a writer today." Since that usually means a couple scarves and pencils in my hair, I know he doesn't mean it as a compliment, but I take it as one just the same. This last book was non-fiction and took me many night writes and months to complete. I think it triggered some sort of epiphany where I accepted my inner writing nerd with open arms. It may have looked like I'd given up on looks entirely, but that was an illusion. I simply had to prioritize. 

Now that the book is out and I'm cleaning up the fallout of being so absorbed for nine months, I'm also focusing out getting out into the world. My plan is to catch up on current events (wait, that was a mistake so never mind about that!), hit book stores, and talk to people.

Yes, socializing and even housework are back for a limited time only.


The next couple of months I have several signings booked, and I'm looking forward to them before diving deep into the next project. I've spent some time thinking about book signings and planning what to take. My goal is to keep it as simple as possible, but these are the five things I think are important to take.

  1. Your attention. Listen when someone is talking to you. Don't worry about what you're going to say next. Listen. Ask questions. Be sincere. 
  2. For signing books I take a Sharpie marker. Some book stores provide them, but I take my own because I prefer the fine point Sharpie pens.
  3. Bookmarks. Readers of actual books like bookmarks. You can also give a signed one to those ebook readers in the crowd. I give bookmarks to anyone I chat with or who wanders by. I bring bookmarks to match whatever book I'm signing, and they have my contact information on them.
  4. Scrap paper. This is so everyone can write their name down and I'll get it right. When multi-tasking, I find this crucial. I take part of one of those little blocks of paper and tear one off for each person.
  5. A list for people to sign up for my mailing list.  
  6. A cheat-sheet for me with ideas on what I might want to write inside books I'm signing. When I'm talking to people, sometimes I blank on what I want to say. With this book in particular (it's about dementia) I want to write something different for someone who's lost a loved one to the disease, or works as a caregiver, or a myriad other scenarios. So I've spent some time thinking about this. 

Writing, Book signing,
If you're a writer, tell me what you think is important to take to a book signing, and if you're a reader, I'd really love to know what you think about author events? Have you attended one? Who'd you get to see?! 

I'd love to go to one for Jeannette Walls who wrote The Glass Castle or Diana Gabaldon of Outlander





Tuesday, September 5, 2017

Loving Gummy While Dementia Storms the Castle





This weekend I hung out with writers. We talked books, writing, slept on couches, went to see The Glass Castle (debated the movie versus the book version), and in an unexpected twist, we all joined family for a Gummy lunch out. She wore her Steelers jersey. It says GUMMY on the back. The staff preps her on Sundays because Juan often takes her out to eat. 

Having a table full of people is one of her favorite things. It still is, although she's not often sure who is who or even if she knows us at all. The jokes are familiar to her and she accepts the love just the same.

Someone asked me afterwards, "Was this a good Gummy day, or a bad one?" 

When you're not used to dementia, how do you know what either looks like?


The thing is, that's a tough question.

Maybe because any day or moment in which Gummy isn't in the ER, angry, or in the depths of despair, is a good day or moment now.

It might not look like a good day, but it is.

She ate her salad and her food with little help. Occasionally she joined the conversation. Lowering my expectations has become a game plan.

Maybe I should say lowering my expectations has helped me get through this. Finding joy in those rare moments when Gummy remembers a name is how I'm rolling. If she smiles, it's a win. If she doesn't remember or doesn't smile it's not a loss. It's a time to look for something else to put on the joy list.

Throwing caution to the wind and taking her out in public is our Russian Roulette Gummy Game Plan. 

Not all days are good days to go out, but some are.

Being out among people going about their normal lives is good for extroverted Gummy. She slips into autopilot. She's doing something normal too. I can see her energy level rise.

Sometimes I take her out of memory care in a wheel chair and she walks back in. Not always. Positive energy isn't enough to make her stop forgetting how to walk. Positive energy can't help her remember. But it can stop dementia from draining her in any given moment. It can help her find her smile.

Being left alone in her confusion drains her. 

Watching life and laughter recharges her, especially when she's the one getting a hug or kiss.

If Gummy's outing goes poorly, therein the problems lie. Then getting her back to a comfortable place is paramount. Thank the heavens her comfortable place has become her room at memory care. 

When she returns she at first doesn't know this place. It's been going on a year, and she doesn't recognize the building from outside.
     Now where are we?
     Am I getting out of the car? Nobody told me.
     What is this place?
     You're not dumping me here, are you?

    
Physical Therapy rearranged her room again. She never notices. The idea is to make it as safe as possible in the hopes she won't fall. My biggest win this entire summer has been getting her a new chair she actually uses. 

Clothes, toothbrushes, even soap, can be ignored. Maybe she doesn't like it. Maybe it's not familiar so she won't touch it because she thinks it might not be hers. Maybe it is familiar so she packs it up and hides it. After the doctor visit this week, she sat in her new chair in memory care and talked to me. When I swung by for an impromptu visit the next day, she sat in that chair and ate a few bites of pizza I brought her. When I didn't come by because a rashy virus has been taking down family members like an army of Orcs, she sat in that chair and talked to me on the phone.
     I haven't seen you in so long!
     It hasn't been that long, Gummy!
     What are you talking about? It's been at least ten years!

The doctor said she needs more salt. Her blood pressure drops when she stands. Gummy loves what I call her pizza potato chip diet. When I visit I bring one or the other. 

Spoiling a child is a bad idea. I don't see the downside to spoiling someone with dementia.

Seize the day?
Hah. Seize the moments. Seize the nanoseconds. Seize whatever you can find despite the fact that we're laughing while the enemy is at the gate. 

I mean if you look hard enough everything has a silver lining.

The castle is under siege, but you can eat whatever you want until the dragon fire gets to this room! I mean this side of the room. How about this chair? 


Now I sit on her bed, and she sits on that chair and we talk. Her words are stifled sometimes, and they evaporate on her. She doesn't always know who the heck I am, but we talk anyway. 
     The guys are driving me nuts, Gummy.
     My car broke down today, Gummy.
     The baby has a fever, Gummy.
Semantics don't matter. We're two women talking. For a moment she focuses, and even when she doesn't know me this conversation happens. 
     Guys do that, you know. Mine drove me nuts. Do you know where he is?
     What kind of car do you have? I don't know where my car is.
     What baby? Is she okay? Is she here?

There's less space to maneuver in now, but we tuck our feet up under us. I've been writing by hand lately, so the tendon problem with my middle finger is flaring up again. It reminds me how to deal with dementia once more. I don't think Gummy has forgotten that part yet. Even if she does, I've got her back.







Monday, August 28, 2017

Ellen Island Camp—Lady Evelyn Lake, Canada, and Princess Fishing with my Husband


Lady Evelyn Lake, Ellen Island Camp, remote fishing trip
The Glitter Globe/S.R. Karfelt





My husband calls it Princess Fishing.

I call it compromise.

He baits my hook, suggests the best way to cast, and when I get a fish he takes it off for me. 

Hey.

Don't judge. Fishing isn't my thing.

You don't see him hanging out at a writer's retreat with me, pen in hand, do you?

We have our things. This remote fishing trip is his blue heaven. 



Lady Evelyn Lake, Ellen Island Camp, remote fishing trip
Hubby's Blue Heaven



It's pretty obvious why, isn't it?


Every year we pack a small mountain of supplies, most of it mosquito repellent, and head for the Wilds of Canada. 

After driving all day, and spending the night in a hotel in New Liskeard, we head for Mowatt Landing. It's at the end of a long unpaved road, where the land meets the water. 

Once there you take a raft or boat ride to the bottom of a dam. You get out and hike to the top of the dam. There you get another boat to Ellen Island. The portage isn't bad. In fact it's fun.


Road? There are no roads where we're going.


This year I was at a writing retreat so I showed up a few days after my husband had already gotten to Ellen Island. It took me longer, one ferry ride, two propeller planes, another two jets, and a drive from the North Bay airport to Mowatt, but I was flying from Alonissos, Greece this time.

The travel gods were kind. While it took a few days and a few airports, eventually I found myself standing once more at Mowatt Landing. This time I had all the luggage I'd been hauling around Greece for a month. It got heavier every single step. Rain clouds approached. But I barely had time to sit on a suitcase and take in that amazing feeling you get when a long journey goes smoothly, before the sound of an approaching boat broke the solitude.



Lady Evelyn Lake, Ellen Island Camp, remote fishing trip
Mowatt Landing



Dear Hubby arrived and we were off to the bush so he could fish and I could sleep the first couple of days. The days are long this far north in summer. The weather can be anything, and it usually is. This year was an extra helping of rain, but the mosquitoes weren't too bad, so no complaints. Hubby doesn't mind fishing in the rain anyway, (he says it's good fishing weather) and I had plenty of reading and writing to catch up on while waiting for my idea of boat weather.

Ellen Island is beautifully rocky and covered in evergreens, with smooth paths, individual cabins and spectacular sunsets. The cabins are new and boast separate kitchens and bedrooms and a bathroom with a compost toilet. Compost toilets aren't my favorite thing, but they're well tended to here. The bathroom also has hot water all day long, but electricity is usually only available from around dinner time until about midnight via island generator.

On rainy days and Saturdays when most people tend to come in from fishing earlier, it is usually available longer. 

There are good paths around the island, and I hike them, spending time enjoying the solitude, quiet, and the views. 

Eventually the sun came out and the Princess Fishing commenced. I get more photos than fish, but I'm cool with that. He gets more fish than photos, and most of his photos are of fish, but that's his thing.


Lady Evelyn Lake, Ellen Island Camp, remote fishing trip
Water Lilies on Still Water



My family has been fishing Lady Evelyn Lake for years and the guys have their favorite spots. Usually they fish for Walleye on dark or rainy days, and Pike on sunny days—but they've caught both on either days. 



Lady Evelyn Lake, Ellen Island Camp, remote fishing trip
Water Lilies on Sunny Water


There are islands to have a shore lunch or picnic on, and landlocked lakes where you can fish for Bass (Angler Lake) or where wily fish rarely see fishermen (Sugar Lake). Those both require a hardier portage than getting to Lady Evelyn does. I have been to both and wasn't interested this year. 



Lady Evelyn Lake, Ellen Island Camp, remote fishing trip
Water Lilies on Dark Water


My kids love Angler Lake because it's crystal clear and you can watch fish after fish bite your line, but it's necessary to hike in with gas and a boat motor to access one of the available boats. You'd also need to book it with your camp so you don't get all the way out there and find someone else is using that boat. Usually the way to Angler is rough due to thousands of mosquitoes descending on the only human they've seen in a couple weeks. You. Believe me all your DEET is salt and pepper to hungry insects. The path is always rough. It is worth the effort just the same.



Lady Evelyn Lake, Ellen Island Camp, remote fishing trip
Water Lilies on Clouds


On sunny days when the water is still and fishing isn't so great, there's plenty of other things to do. Franks Falls is beautiful, and you might get lucky with a fish just the same. Sometimes we swim there. Willow Lake is also spectacular, nearly empty of all but an eagle or beaver, and sometimes a moose. Its also dotted with shady coves where fish like to hide on hot days. Those fish wanted nothing to do with me this trip, but I don't care. I love floating over the quiet water and picnicking on empty islands. 



Lady Evelyn Lake, Ellen Island Camp, remote fishing trip
The sky and water change daily, but it's always beautiful.



There's fishing right around Ellen Island too, and you can swim right off the dock. Sometimes there's a bonfire at night, and I've glimpsed the Northern Lights during visits. 



Lady Evelyn Lake, Ellen Island Camp, remote fishing trip
The swimming raft at Ellen Island Camp



Some of the camps provide meal plans. We've stayed at one in the past, but we prefer to make our own schedule and meals at Ellen Island. All the cabins have water coolers and fresh water is provided. There's wifi available in the office area of the owners' (Jeff and Jane Landriault's) cabin. There's also helpful staff who come by at least once a day and see to the cabins and visitors. 



Lady Evelyn Lake, Ellen Island Camp, remote fishing trip
Leaving Lady Evelyn in the foggy morning this year.


Leaving is the hardest part about visiting Lady Evelyn Lake, even for those of us who aren't wild about fishing. For my hubby and kids it is downright painful and they're already planning next year's trip before we're off the water.



Thursday, August 24, 2017

Alonissos, Greece and the Weird Writer Who Goes There


Karfelt, WRA, Leftos, Beach, Favorite Beach, Alonissos
S.R. Karfelt/The Glitter Globe
My Favorite Beach





Nobody wants to hear about my trip to Greece. For the last few years I've been going there to attend a writing workshop. At first I tried to tell people about it. Here's the thing though, there is nobody who wants to hear about anyone's magical multiple week long vacation to Greece. 

Nobody.

Shut up. Some people have to work for a living. The kind of work that doesn't give you weeks to travel.

Do not make us kill you.

Do not ruin our time at the beach by a lake with your amaze-balls Greek photos.

I totally get this. 

So I stopped talking about it. After posting a freak ton of photos to Instagram I mean. But that's showing, not telling. Nope. I tuck it all up inside the magical olive tree growing beside my favorite beach, and set it just under my heart. I hope with all my wishful dreams that I can return again next year, and I know how fortunate I am to have gone at all. During the year I look at that secret wonderful and can barely believe it happened. I often wear a silver ring from Alonissos, and I don't wear rings. But it's beautiful and lightweight, and doesn't bother me as much as most rings do. 

Writing events are difficult to explain to non-writers. The best I can say is this. Writers are weird. We know we're weird. People like to joke about how weird they are, or how weird other people are. But writers are no-joke, to the bone, weirdos. 

When you're a genuine weirdo, being weird isn't fun. It got old somewhere around grade school. When you see the world differently, and take in overwhelming amounts of data every waking moment, and process your thoughts on paper to even get them into some type of order, well, it can be a deeply lonely experience.

At least until you start making up imaginary characters and having a blast with them.

Controlling your own universe is way cool. 

I digress.

Getting together with other writers is how I imagine most people feel when they truly connect with other people. I don't mean loving people. We love people. I adore my hot husband. I think my kids are the coolest. My friends put up with my crap and have fun with me.

But my writerly peeps understand my weird ass. They don't just tolerate my shit. They have the exact same weird shit. It's like being an alien and finding your people. I wish it for all writerly types.

You should see a writer conference. Everyone is talking at once. Like freaking extroverts or something. (Although there are plenty of writers who ARE extroverts. Talk about weirdos.) 

At writer gatherings I can hardly sleep I'm so excited and wired. Afterwards I really need a vacation to recover. Writers don't make me tired like most social interaction. Lack of sleep does. The magic of the gathering is that I can plug the cord to my freak flag in and be as weird as I can (it's a lot of weird). They don't even notice.

This shouldn't make those who love writers envious in any way. As much fun and connection as we have when we gather together, if it lasted too long we'd probably go cannibal or something. It's like a matter anti-matter thing. At first it's a blast, and then the universe is imploding.

We don't love each other more. We just share our weird. It's a relief. If you love a writer, I highly recommend getting them with other writers. It's like sending them to therapy. Everyone benefits.

Still. Nobody wants to hear about my kick-ass Greek vacation. I can probably tell you about the bus tour I took before the writing workshop started. I spent a couple days in Athens and went up to Meteora to see those monasteries in the clouds. But if I launch into the real reason my house looks like this and how I use my money on a trip that takes me nearly three days of travel just to arrive at the destination, and how I end up spending days on end huddled knee to knee with a bunch of other women writers, barely looking up, and just writing and then reading it aloud, well, that'd just be weird wouldn't it?




  

Monday, August 21, 2017

Taking Care of Gummy—When Dementia Goes Down the Rabbit Hole, Sundowning

Taking Care of Gummy, S.R. Karfelt,
The Glitter Globe/S.R. Karfelt


Sundowning.

Gummy keeps forgetting how to walk. If it happens while she's standing, and she falls, she winds up in the ER. It's happening more and more often now. Twice this week. 

We have ER visits down to a system. Finish your conference call. Let me get the caregiver paperwork. Brush your teeth. Stop for gas if necessary. Until this week it worked.

This week we had to change our Dementia Plan. Again.

All dementia game plans are made out of sand in a windstorm.

It's necessary to have one, for all the good it does.

This game changer found Gummy standing on TOP of her bed in the ER, one leg wedged between the railing and the mattress. Teetering.

She'd been left alone for entire seconds, you see.

She was leaving, you see. I've been here for hours. This is ridiculous. 

Sundowning doesn't have to make any sense at all. It is completely logic-free. The hospital bed rails were in Gummy's way so she'd decided to walk over them. Never mind the fact that she'd take a header onto the floor diving off in the process.

Hubby caught her just in time.

In the time it took us to get there, the ER workers had to catch her and take her back to her room five times. Not including her swan dive out of the bed attempt.

Now we have new guidelines we've implemented. If it's sundowning time, get there. FAST. Because who knows what she'll do if left alone for even a brief time.

Gummy's dementia presents in the way that she can't hold any new information. You can tell her she's in the hospital, and she'll nod and seem to take it in. 3-2-1. Gone. 

If left alone, five minutes might seem like hours to her. She'll decide to leave. Home, home, home seems to be a recurring dementia mantra, and when Gummy isn't trying to figure out what the heck is going on, she's working on going home. 

Home, of course, is an elusive apparition of when life made sense.

You can't get home from advanced dementia. 

They're stuck forever with this uncomfortable desire that can't be fulfilled. Like human ET's they're forever longing for hooooome. 

It's worse during sundowning.

Everything is worse during sundowning. 

Sundowning is a dementia term, but I'm not going to give you a technical definition of it. I assume you have the google and know how to use it. 

What I'll tell you is what I've seen first hand. 

There are many degrees of dementia, and every individual who has it has a unique presentation too. 

Later in the day, when sundowning kicks in, everything gets worse. In the morning Gummy is at her best. She wants coffee, makes her bed, what's she doing in this place? And why are there noodles in her purse?

During sundowning she drops down the rabbit hole so far that sometimes I'll sneak away when she goes into the bathroom. I know she won't remember I was there by the time she comes out in sixty seconds. Sometimes I can't bear the looped conversation any longer. 
     Where's that man I'm married to?
     I don't know. It's your turn to watch him. (We don't go over who is dead during sundowning. She can't hold onto it, and my goal is to make her as comfortable as possible.)
She gives my little joke a polite laugh.
     But really? He dropped me off here to go look at animals. Will he come back tonight?
     I don't know.
     Have you seen my husband? He left me here at the pool and went somewhere.
     I haven't seen him.
     Who's going to take me home? When did you see him last?
We're standing in her room at memory care. 
This entire conversation happened within about a thirty second time-frame. 

It's much more difficult to pacify Gummy later in the day. Her mind can go anywhere, all pretty much at the same time.

Whatever the scientific theory is for sundowning, I can tell you this, everyone with memory loss seems to have it in some capacity. At least the people I've seen. 

Another thing is that Gummy's sundowning seems to kick in anytime after noon, usually by two o'clock. From then on it gets progressively worse.

Maybe people are solar powered. I don't know. By the time dinner ends sundowning confusion can range from tears to anger to Gummy's latest presentation, forgetting how to walk.

I'm curious if today's solar eclipse will instigate an early round of sundowning.

The aides earn their stripes in the evenings. They claim it's particularly bad during full moons. I told them once that I don't believe in that. They told me I was welcome to spend the full moon there and I'd become a believer fairly quickly.

Summer concerts are coming to an end and I wanted to make sure Gummy could go to another one. Last time I took her she spent the night in the ER because it was the first time she forgot how to walk. This time I put her in a wheelchair. 

There's nothing funny about the first time someone really has to use a wheelchair. I always try to look on the bright side and make a joke for Gummy, but sometimes you can't see the bright side when you're over your head in sucks. 

I thought she'd balk. I told her she got to ride in the princess chair. She plopped right down without complaint. An aide put her feet in the holders. I'd have pushed her away dragging her feet. I didn't know. I've said before the semantics of caregiving isn't my strong suit. My gift is my talent for whipping out the mental dog and pony show and entertaining her or making her laugh.

Going into the elevator I went too fast and she nearly whacked into the wall.
     Sorry, Gummy.
     Yeah, right. Why are you laughing so hard?
I was. She did too, thankfully. In the end we found something funny about the wheelchair, even if it was just my driving.

Inappropriate humor is my thing.

Gummy's too.

We'd both rather laugh than cry. 

There's nothing funny about dementia. All the more reason to laugh in its big effing face.

The music was Big Band. I think music helps, even during sundowning. Gummy had a soda and chips, and when my daughter came with her own bag of chips, Gummy took some of those kind too. She talked nonsense, and we rolled with it, allowing her to choose whatever reality worked for her at the moment.

By that I mean we didn't correct her about where she was, or when, or who anyone was. She thought everyone there was from her church. She looked for the kids every time a song ended, leaning forward in the wheelchair.
     Are my kids down there? Who's watching them?

At one point something inside the big top tent jingled. It sounded like metal keys clanging. Gummy sat up straighter.
     My husband's here! Did you hear that?
     Is that the sound he makes?
     Yes. Didn't you ever notice that?

Throughout the entire concert she peppered her granddaughter with questions.
     Where is my husband?
     Who is that woman? I know her!
     Get her attention. I want to say hello.
We tried to avoid that. It's usually an aide from memory care she's already quizzed about how she knew her. The aides are mostly busy trying to keep tabs on other memory care patients without family there to help corral them. 

After the concert I pushed Gummy back through the grass and upstairs to memory care. 
     Why are we going in here?
     What's this place about?
     Where did the kids go?
     Where are we going?
     You're not dumping me here are you?
     Oh, this room. This is the room my husband bought. He put it in the basement for when we get company. Is he coming to get me?
   

This morning memory care called at the crack of morning to tell me Gummy again was heading for the ER. I hurried up, took a ten second shower, and headed out the door in damp clothes because who has time to dry off?

I had visions of Gummy standing on that hospital bed.

Before I even got to the hospital they called to say she could go back to memory care. That took less than an hour. That has got to be an ER world record.

Don't think I'm complaining. I know they did their job. They just did it quickly. This time Gummy hadn't fallen. She wasn't sundowning. This trip to the hospital had no system. Like the first time, it was all new and extra worrisome. She couldn't get out of bed and hurt. 

Once more I pushed her out in a wheelchair. Once more I had no idea how to cope with the foot pads. I helped her step around them, although I'm sure there's a way to move them. I got her into the passenger seat in her nightgown and socks. She didn't want breakfast, but thrilled to a sausage muffin and coffee. A lowly fast food drive-thru never looks so beautiful as when you've a carload of preschoolers or someone with dementia.

Back at memory care another wheelchair appeared. This time with someone who knew how to drive it. Gummy wasn't sure where we were or what was going on, but she walked right into her room and sat in her new chair. The kind physical therapy recommended for her. A Queen Anne style with arms she can use to get in and out of. 


Even before sundowning the emergency room already faded away. She spent the day doing what she's been doing her past year in memory care, pacing the floor to go home. It's a specter of her earlier coups, a nebulous Gummy, but oddly reassuring. 

Come evening I returned to Gummy's sundowning wraith with my bag of tricks. She spiraled back to that chair and watched with bewildered eyes as I tended her nails and rubbed lotions and told stories illustrated with pictures on my phone.

In the quiet night they lassoed her and tucked her into bed.
     My dad, she chuckled, is a ladies man even though he's married.
Naughty secrets whispered in the dark, true or not doesn't matter. She doesn't know my name or hers right now, it doesn't matter either. For a moment she's here and comfortable. That's all that matters because we have nothing else with this disease.
     Dream of sailboats, I say like I used to say to my little kids.
     Alright, she whispered back.
And for one brief shining moment in the dark, we both found peace down the rabbit hole. 







Friday, August 18, 2017

Calling Bullshit on Nazis—A Poet's Take

Love isn't all you need, it's all you have, S.R. Karfelt
S.R. Karfelt/The Glitter Globe



When you say white pride
what i hear
is
We used to be boss
& it looks cool
on old TV
let's have that back again
cause work and books is hard

I wanna be Super Mario boss
Bowser big

The only time I entertain
clan genetics
is when you
talk
white pride
I worry for
your damaged helix

Crusty chromosomes
DNR DNA

But let's never judge
your family for
the stupid you
found in that bag
of Doritos
when watching
black and white
TV

Mustached hate
Free-ride fate

When the dim bulb lit
illuminating only
empty crumbs and white
fingers
tipped in cheeto orange
That's all I got
Stupid 'splained
to hungry brains
white and all gone

Pigment deficient
Me-mine proficient

You missed the memo
long delayed
nothing special's
in that skin
without work
uncomfortable effort
on a level colorful
playing field

My precious
As if

If your momma forgot
to say
you can do hard
work
you can 
not
rise and whine

I'll have what she's having
Shitter's full, Clark

White means
Ancestors from colder climes
Dark means
Ancestors from warmer ones
Tell me now
Who's was smarter

Frankly my dear I don't give a damn
Toto I've a feeling we're not in Kansas anymore

If'n you can't 
do words or work
get outta the way
of rainbow muscle
that will

Nobody puts baby in the corner
I feel the need, the need for speed

Yes
we pay
for the sins of
our fathers
everyone does

Elementary my dear Watson
You're gonna need a bigger boat


It's not fair
life
too bad.
ask the rainbow


you have been weighed you have been measured
and you absolutely have been found
wanting
brave new world





If'n I was foaming at the mouth a tad when I wrote this, it probably doesn't show.


The above picture caught my eye during my travels earlier this summer. It hangs on a wall in a MONASTERY

Translated from Greek, the blurb below it reads: 
A German soldier is taken down in an unsuccessful attempt to
raise the swastika flag on the rocky Megali Agia precipice
in Meteora

Can't you just picture a monk using a Gandalf staff to sweep the legs out from under a Nazi? Until the picture I would've assumed that'd be metaphorical. Monk says, as if.

Bam that brother. Fist bump if you can feel me. 



quotes from lord of the rings, clueless, when harry met sally, christmas vacation, gone with the wind, wizard of oz, dirty dancing, jaws, top gun, sherlock holmes, and a knights tale