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At the beginning of Water Street… I stopped to take this picture in order to paint it someday.

”See that building up there on that hill,” starts in my husband, who has dementia.

“It belonged to my father when we started this town.”  I allow him to say things like this without any correction.  We have only lived here six years and most of them have been living with dementia.

He enjoys telling these stories, so who cares if they’re true.

He tells stories about everything now.

I enjoy just looking:  the trees, the people standing waiting for the walk signal on the street paralleling the river.  Where is everyone headed?  What are they thinking?

I like going this way because it is off the Main Street in our little town and on this quaint old street lined with… old memories.

My Granny used to bring my older brother and I “to town” and we would go to the 5 and dime store so she could “spoil us” which meant we got to pick out a toy.  Seems everyone knew my Granny and she liked to show us off, I think, more than anything.

My parents grew up in this town and tell stories of how different life was. Now that I’m older I pay more attention.

My mom tells of how she and her brother got to wander around town back in the 50’s when kids could do such a thing on a Saturday and they would shortcut through the tiny space between the buildings to get to the movie theater partly to sit in air conditioning.

If I had the money I would buy a space on Water Street and open a museum with exhibits that change out.  This town needs a history museum.  But, my very first exhibit would be “Water Street through time”.  I’m always imagining “ghost images” of people who have inhabited it.  What were they wearing, doing, hoping, riding in (or on), seeing?

I know my mom went to see Tarzan and went right home to jump out of a tree with a rope around her neck… now that was a story!!!

When we are driving down Water Street to the adult day care, he asks me several times (or a dozen…) if I am picking him up at 3:00.  Yes.  Yes.  Yes.  Don’t worry.  That’s what I wrote on his yellow sticky note on the front of The Yellow Book he takes with him.

Being keyed up is part of his dementia.

Repetition is part of the dementia.

But then so is the reassurance I know he needs.

And so we drive along.

“Sketching” in acrylics. The Path

I was in the mood to do what I call acrylic sketching today (above landscape). I’ve been painting in my sketch book recently. And, I can’t wait to get back to painting on canvas. The paint goes on so differently on the paper. I love the paint on the canvas because there is some give to it as you paint. Why is that important to me? I don’t know, but I do like the feel.

I plan to do a painting soon on canvas of a hill country pathway like one that would’ve been painted in the 18th century, and I plan to frame it in an old timey ornate gold frame, the kind can only be gotten (affordably) at a thrift store these days.

Music and Dementia

As I was cleaning up from the day’s painting my daughter, who had been playing her precise classical pieces and jazzed up versions of her other songs, sat and improvised on the piano The House of the Rising Sun and my husband began belting with more feeling than most people sing… the lyrics: “There is a house in New Orleans…”

There are more interesting changes in my husband’s dementia than the delusions, hallucinations, forgetting and wandering and weird behavior.

Sometimes there are good things.

My husband never before cared much about music. He certainly never sang except for in church. And then I would have to strain to hear the proper tune to sing because he was so off.

He has developed a whole new kind of a talent now for singing. Knows all the words to all the songs though he doesn’t know the president, how old his daughter is, the city he’s in or what he ate for lunch.

And he’s quite on pitch now. Do you think that the difference in his musical ability is because now he doesn’t hold back?

We have music in our home all the time.

And when not at home, we sing CD’s … from old time gospel to John Denver to Queen.

“We are the champions, my friends….”

Pumpkins I painted over my old Peaches Sign

Eating with Dementia

We made homemade tortillas and smoked up the kitchen in the process (the pan I think was too hot?) requiring that we open all the windows though there was not a breath of air in this Texas Hill Country post lots of rain evening.

To complete the eventful dinner time , my husband, who has dementia, built his own taco but he did it completely upside down. He put all of the ingredients in layers on his plate starting with the sour cream, the cheese, and the chunks of chicken and then topped it with a tortilla.

I just watched (more like an artist, less like a caregiver) to see what would happen next as he turned his plate upside down and it all fell off to the table, disgustingly. I could’ve helped him but he seemed determined.

He scraped it all off with the tortilla and ate it. I figured it was just a matter of a quick wipe up when he was done. I’ve seen worse being a mom of three.

But the chicken tacos with the fresh tortillas were just delicious.

And then we ate ice cream. And who could argue with that?

I’ve been working on this a little each day… added another tree and widened the river.

Playing Clue With Dementia. Yes We Can!

First of all, I’m considering making my own worksheets for the game of Clue. We ran out about six months ago and each time we play we write out all of the categories before we start playing. Yes, we have played it a lot over the years. And, he used to be the one to win. I’ve always been pretty bad at it. Now, my game is Scrabble!

But our daughter likes to play Clue. And, she still doesn’t mind inviting him to join us, though we figured out a way to play with just 2 players.

So, I have created – on my new IPAD Pro – a new Clue worksheet.

I first perused Etsy to see if anyone has made any. None. So, maybe I am the first?

I am going to print them and get them laminated so they can be reusable with Expo marker.

Dementia Clue Works!

We play dementia Clue which means we let him do whatever he wants. We let him have some of the cards and don’t make a big deal out of it if he says the card out loud. If you are familiar with the game, a player quietly shows their card to the person whose turn it is. It makes the game shorter which is good for playing with him. He gets joy from choosing to be for instance in the kitchen or the bedroom. We tell him he is the winner. Some of his playing and antics are funny but the last time we played I noticed I lost a bit of my game playing funny bone.

What I’m working on. Painting and Praying.

A DRAMA OF DEMENTIA DRUGS

Drugs… past use

Dementia drugs have been unsuccessful in the past in treating my husband’s intermittent revved up delusional antics that can lead him to racing out the door on a mission, with me having to chase him down.

In fact about 2 years ago the drugs in his system, all prescribed dosages, interacted and sent him to the trauma center by helicopter.

So the trauma doctor took him off of all those drugs and instructed us to contact his doctor to see what drugs might work better.

Better than drugs?

By the time we could get in to the doctor and because the drug she wanted to try him on was not covered under his Medicare plan, I decided instead I would try to manage him drug free with redirect, a bottle of water, a cookie, my calm voice, a smile.

But dementia is progressive…

But dementia being progressive, worse over time, stopped at times listening to me. So I took him back to his neurologist who prescribed a very low dose mood stabilizer that I wouldn’t have to give all the time. Only if he began showing signs of what I refer to as “brick wall”, impervious to my behavioral interventions and usual winning ways with him.

I could sometimes give him a pill.

I have to say it is a strange thing as a wife not to be able to influence any longer the one person you used to be able to win over.

Why didn’t I just give him a pill?

I almost gave him one of those pills today because he could not settle himself down. He began being afraid it was going to flood because our local paper had flood watch as the headline story. He would not drop the subject. Would not be redirected. And of course there is never any ability to reason with him.

We just had a hard dementia day. All day.

I should have medicated him.

The F fell off my letter board and the reflection in the Bath and Body candle lid picked up the word.

Is it Fall yet?????? (Scroll down for poem at the end)

Fall isn’t necessarily my favorite time of year. I just like the season called Summer’s Over. And the beginning of that season is September 2. In my opinion, The best description for Fall was written by Nora Ephron, God rest her soul, and includes freshly sharpened pencils. (You’ve Got Mail)

I love the sense of expectation Fall ushers in where summer still tries to keep us in its doldrums.

When I was a kid we got brand new school clothes in the Fall that I wore to school even though I roasted. Anyone remember cowl necks.

This morning I was so glad to get pictures by text of my oldest daughter’s new Fall wreath she made which looked like something you’d see in a magazine. So I figured it was high time to replace mine from last Spring that had Easter eggs all over it.

So now I have a new Fall wreath on my front door. I bought mine from Walmart but who will ever know?

BRING BACK AUTUMN

Where did Autumn go?

Seems the word is rarely used.

Too quaint and dry and dusty,

Making Fall so overbruised.

Happy Fall? Really…

Let’s put our minds to higher thoughts

Of harvest, pilgrims, and Thanksgiving,

Around the table, olds and tots.

Bring back Autumn

‘Cause Fall… good grief!

It’s solely relating to a leaf.

~Julie Robinson

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Redirecting From the Rabbit Hole

I picture, at the entrance to the proverbial rabbit hole of wayward thoughts, desires, and actions, the place good people fall, a stern rabbit holding a sign:

TURN AROUND.

I can easily find myself ignoring those warning signs in the matter of my own creative passion. I’m a creative junkie. How can that be a problem? Isn’t creative expression a good thing? Not when it is out of order. And I need to keep order and boundaries for my home since I am also in the business of redirecting others, a homeschooling teenager and a severely demented husband.

You know though there is a lie I sometimes fall prey to that leads me bunny trailing.

“You’ve got a lot on your shoulders.  Go easy on yourself.”

That leads me to the rabbit hole, a world where my thoughts and desires are scattered in too many directions that I end up not actually accomplishing anything of real value in my painting and my writing.

My valuable creative personal resources hop off to everything else …

I think it important I should divulge the list of the attention stealers for me: (and, of course, there’s nothing wrong with doing any of these things).

CREATIVE ATTENTION STEALERS

Paper mache, clay, watercolor, charcoal, crayons, markers, pastels, oil pastels, embroidery, crochet, knitting, sewing, writing poetry, writing many comic strips about my yorkie, making little stuffed baby sock creatures, creating greeting cards with die cut shapes from aluminum cans and cardboard and whatever I figured out could go through the die cutter, creating stories and handmade and painted books for my grandchildren, painting elaborate T-shirts for my grandchildren. And rearranging and painting and redecorating my home and cleaning out and redoing all areas of the house, and making new recipes and special meals, and baking all kinds of treats and (trying to) make gingerbread houses. Then there’s my new fascination for reading and studying the 14th century. Now I’m not at all saying I have to give it all up but I’m just trying to prove a point…

I am a creative junkie.  (Safe to say?)

My creativity rabbit holes.  So… I am now trying to harness that creative energy and put it into what I have decided is most important for me to be doing.

I have to decide if the thing I am beginning to put my mind to figuring out, the thing I am just beginning to set my heart on, is something I need to spend my creative God given resources on right now or is it a rabbit hole that makes me lose the best parts of myself…. my heart and my mind.

So, what do I plan to do next.

Going With The Flow

A “Navy Brat”, I spent my childhood at the beach. I think it’s why I’m magnetically drawn to paint it now.

I race through cleaning up the breakfast mess and make sure my husband has plenty of coffee and “reading” material because I’ve got an ocean scene calling my artist’s imagination. Have I mentioned I’ve painted stacks of paintings, many of them ocean scenes. Not all good. Some ok. All still in a learning stage for me.

As I paint, my husband and I usually chat about what he’s looking at in the paper. He thinks he knows the people in the pictures, he’s been in business with them, his mind is delusionally entertwined with them. Mostly I say “Oh, is that right,” and “Wow I didn’t know that”, faking a tone to allow him to continue there. I know he just likes the talking and the time.

I put a live ocean scene on YouTube loud enough so I can feel like I’m there and so I can study the light hitting all the places light hits, glowing, refracting, being deflected and diffused, causing shadows.

Sometimes when I paint, I wax a little poetic… I didn’t want to title this one because it would mess up the tip of the wave… so it is

An

Ode

to the

Ocean:

a melody

and a dance.

Waves prance,

in lacy edge dress,

seagulls squawk soprano,

starkly accompanying the sea.

And there am I, a party to the scene,

only in my mind through the power of TV.

~ Julie Robinson

As all of this “excitement” is raging, my husband gets up to return to his second love, Turner Classic Movies. First he looks at my painting and says, as always, “Another ocean”. I try not to be deflated by the flat dementia tone that I know he has entirely no control over.

And he leaves me at my painting to go watch Turner Classic Movies.

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Caregiver Painting Poetry

Sometimes I write stories or poetry to go with my paintings. I’m absolutely taken in by the subject matter and get absorbed in my paintings. The picture I took of this one in my Pathways series is a little dark… but I decided to leave it that way because I thought it a mysterious path.

The writing/painting combo keeps away the dangerous caregiver stress.  (See my previous post.)

Above the painting… below the poem.

The Dusty Road

The dusty road,

After a squall,

Whispers, “Come and walk awhile”,

Needing nothing,

It wants your all.

You listen to

The dusty road

And consider its promise,

Breathing in its sweet grasses,

Seems like heaven’s abode.

Bunnies race

And deer eyes gleam.

The dusty road

‘Tis steep it seems;

And the road becomes your dreams.

The river racing

And Crickets chirp,

And you plod on and on and on and on

The dusty road

It’s mighty work.

At last, a rock’s your friend,

Long nuff you’ve strode.

The singers, the music, the song,

And to sleep you’ve gone on

The dusty road.

~ Julie Robinson

It’s Fall in my cart!!!

Caregiver Stress… My Take

Have you seen the statistics related to how badly caregivers fare? Not so good! I’ll leave it to you to google this.

Lots of research has apparently said that I’m toast.

So since I’ve been doing this for 6 years now I thought it would be a good idea since it’s almost Fall to take an almost change of season stock of myself:

do I have stress?

I had to think hard about this one.

Well, I do have stressors. That’s for sure. But I don’t think I’m stressed. Here is how I consider measuring this for myself:

1. Do I keep myself and my home clean and as neat as possible? Yes. Probably better than ever since I’m here most the time in “forced retirement”.

But I’m no perfectionist. Last Spring I planted a vegetable garden and forgot to water it often enough that it just flat gave out. I felt like a gardener failure. But right now I’m making plans to try it again next Spring and setting an iPhone watering reminder

2. Am I angry? Or do I cry a lot? No

3. Do I get breaks? Yes. I take my husband to adult daycare a few times a week.

4. Do I maintain friendships? The best I can. I run a weekly bible study out of my home. We are a crazy mix of Catholics and Baptists. Today we joked that we are the Batholics. As well, am starting back up with a ladies bible study at our church.

5. Do I have outside interests besides caregiving? Yes. I paint and, of course, blog, and am writing a book. And I read. I have a wide range of reading interests. And I oversee my daughter who’s homeschooling 11th grade.

6. Do I feel depressed or discouraged? Earlier on It was harder for me. I was ready for it to be over and not knowing how long used to just “eat my lunch”. But as time has passed I have gotten more peace about it.

I pray. And I memorize scripture.

7. Do I overeat or use alcohol/drugs to cope. Well no on the 2 latters. But the overeating I was guilty of. Right now I’m on day 5 of no sweets because I was overeating them. I should try overeating broccoli sometime.

These are the criteria in my mind for whether I’m over stressed. You might do your own inventory and with your own criteria. I suggest you do, especially after you check out the scary reports on what caregiver stress can do to a person.

Now I will sip the cranberry tea I just brewed and light me a pumpkin candle. Fall… come quick!