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iPhone art. If you look closely in the lower left hand corner you will see the paper holes. I had taken a picture of some smears on my piece of paper and then doodled around with the iPad pencil. Sometimes I write a poem to go with my paintings.  (See Adrift Haiku below story)

Have you seen Adrift?

My daughter and I watched the movie Adrift last night on Amazon Prime.  If you haven’t seen it yet I promise I won’t spoil the story.

We sat together on the couch watching it and nearly hit each other over the grief when they showed the thing … that happened, the thing that was revealed was so surprising.  It’s a true story.

What is it called when the author knows the thing that happens and keeps it a secret?  It makes me kinda mad, like they were keeping a secret and holding it back from you to punch you in the face with it for effect.  It was strangely satisfying though because I think it made us feel a little like the character felt when it happened.

What happens in the movie (except the thing I can’t tell you that happened), is no surprise.  And, that there would be a rescue was no surprise since it is based on a true story.

The way the director weaves in the days prior, during, and after the storm of a couple who fall in love not long before they set sail to the time of a great storm that changes their course, leaves us all adrift with them.  We were on that sailboat… what a cinematic accomplishment.  And, we always kept in the back of our mind that there of course would be a rescue.

But, the surprise:  it cut deep.

See the movie and tell me what you think.

Adrift Haiku

Adrift is not lost

A storm can n’er be conquered

But peace can be found.

~Julie Robinson

I couldn’t help comparing Adrift to being a caregiver to my spouse who has dementia.  Not everything can be equally compared.  But sometimes I am Adrift.

 

 

 

 

 

 

Close up on a painting I’m working on to show details. When my iPhone wasn’t working, I noticed there was detail needed in this painting I’ve been working on for the past two days.

IPhone Addiction… how to know?

This all happened to me yesterday so I diagnose myself: addicted

I got to thinking … maybe it isn’t the iPhone, per se, ,,,but the

I n f o r m a t i o n.

IPHONE ADDICTION?

Here is a list of my own life events and my own reactions to a day without my iphone.

This wonderful technology I haven’t had that long in the scheme of my life… It was born in 2001. YouTube 2006, WordPress 2003, Siri 2011. I use it to find the word of the day, the verse of the day, and look up words … I love etymology! Breaking news, traveling the Google Earth to find that place they are talking about on the news, writing my blog, and poetry, and reading, keeping up my blog readers, checking arrival of Amazon prime orders, YouTube for learning about anything and everything, and using Siri for text, reminders, putting things on my calendar. The iPhone has reached in and gripped my entire life. And when I didn’t have it, I felt at a loss. I think I might feel that the iPhone is my friend. Granted, it wasn’t just the iphone, but my internet and cellular were also out at my house. So, a triple whammy!

I was locked out of my phone first thing in the morning. Because, of course, what is the first thing I do every morning? I simply didn’t enter the passcode correctly that I had just set up less than a day ago so got locked out.

1. I was frantic about it beyond normal and couldn’t eat because I was trying to solve the problem.

2. Spent all day watching YouTube videos to figure out how to reset my phone and trying all of the things they said to do. None of those “hard reset” hacks worked.

3. Spent hours and energy into iTunes (which by the way could be more helpful).

4. Bought a brand new phone instead of waiting to go to the apple store where I was told they could restore my phone.

5. When I got home with my new phone there was an internet outage in my area until the next morning so I ate a cupcake and went to bed with my book, The Distant Mirror, The Calamitous 14th Century, a difficult read that I usually read with Wikipedia at the ready. No Wikipedia. So, I couldn’t really even read my book.

6. Upset that I couldn’t answer comments on my blog.

7. Couldn’t set up my new iPhone because I couldn’t go on the internet or the cellular service. And, just like a person whose power goes out who keeps trying to flick on the light switch, that’s what I kept on doing with my phone. It was on… I could see the apps, but I couldn’t actually get in. I kept going to the weather app and the news app… For some reason, I wasn’t able to use the cellular data for internet either. It was tough for an information junkie.

8. Woke the next morning and my heart skipped a beat when I saw the internet on so I could set up my new phone.

I was refreshed because I got a good night’s sleep … with no YouTube to distract me and I thought about trying to fight the iPhone addiction. So, I looked up, on the iPhone, “how to fight iPhone addiction”. Of course.

Visiting a Colorful Muddy Road, Acrylic on Canvas

My husband was cranky so when I mentioned his going to the adult day care he told me in a tone that I knew was going to be a “brick wall” conversation… that I needed to be the one to go.

Sometimes I run through phrases in my head that fortunately I don’t speak. All those years of my mom’s teaching me (and my big teenager mouth) to let those thoughts rattle around awhile before deciding to let them shoot out the chute… pays off time and again.

So I told him he’d maybe feel better if he lay down awhile. The sound of my voice was so soothing I surprised myself. Thanks mom! I know it was hard work raising me.

So today we stayed home and I made chicken flautas. Everyone’s favorite. Here’s the recipe. I don’t do exact amounts but I will try to here. I’ve been cooking these up for perhaps 20 years and the amounts don’t have to be exact. Trick is to use leftover chicken and soften the tortillas before you stuff them or they will crack.

I’ve had these in a restaurant… but always deep fried. Never like mine… so GOOD!

Julie’s Chicken Flautas

1 cup of cooked chicken, shredded or diced up small

1/2 cup grated cheddar cheese

1/2 can green chilis

1 tsp cumin

8 flour tortillas, warmed

Roll up cooked chicken, grated cheese, green chilies and cumin in each flour tortilla. Seal each one good and tight with a wooden toothpick. They resemble little flutes – where they get their name flautas, Spanish for flute. Brown then them in a little oil in a skillet. Serve over shredded lettuce and diced tomatoes and top with sour cream and salsa. They are a pretty presentation. Sometimes I sprinkle a little cheddar cheese on top to make them appear so extra tasty. Don’t forget to remove the wooden toothpick before serving.

So, I decided as I was serving the delicious meal that sometimes it is better to stay home and invite people over. I invited my parents, who I was intending to meet out for lunch, and asked them to bring cupcakes from our favorite cupcake shop: The Sweeter Side of Rails. We like the tuxedo and the peanut butter cup. That made it all the more sweet.

And after they left, I painted over the above painting which I had painted last year when I was doing clouds differently than I am doing now. And what did I do, of course you know if you’ve been reading my blog….

…but add a very wet reflecty muddy road that is in itself a weird kind of respite for me..

If Clouds Could Talk, Acrylic on Canvas … with poem at the end of this post.

We went for the Psych evaluation.

First off, the psychologist had at least 4″ high purple shag wall to wall carpeting in her office. I haven’t ever seen anything like it and I’m a child of the 70’s.

And her office was in an old building that didn’t have a “trust factor” for me.

As in the above painting of mine, clouds talk, and apparently, psychologists performing a psych eval do too. After the evaluation the psychologist gave her opinion that my husband probably wouldn’t get the disability because she didn’t think dementia is caused by PTSD and that he didn’t have any PTSD symptoms.

But the paperwork from the VA had said the psychologist evaluator only does the evaluation and won’t give an answer. I thought it a bit strange she’d give an opinion.

In my own reading on the matter I’ve learned that it does happen that a person can have a very stressful event happen such as my husband did in Vietnam that can cause dementia later in life.

Well, I am not worried about any of it. And I remind myself that I’m just carrying through on the application for disability that the VFW near us had helped my husband apply for a few years ago after he was no longer able to work, but had not as yet been diagnosed with dementia.

A little tiny bit of history on him case you were wondering…

He was a practicing attorney until 2012 when he wasn’t able any longer to concentrate or to properly function in his job.

Then in 2014 after he had been going to visit with the veterans at our local VFW, they helped him apply.

Then in 2015 he finally got a diagnosis of dementia.

Then… a few weeks ago (9/2018) I was looking for something in the file cabinet and I came across the PTSD disability application which he had filed. So I took it up to the VFW and they refiled it with the information they had said they were lacking. In about a week the psych eval had been ordered by the VA.

I don’t know how any of it will go. But that purple shag carpeting was very very strange. Just about as strange as clouds communicating.

If Clouds Could Talk

If clouds could talk

in puffed up words

Or heavy purple phrases

Misty morning melodies

To tornado laden crazies

They’d loftily quote

Or drastically deluge

If clouds could talk.

~Julie Robinson

This current painting of mine has no storm in it. I have been painting out of my own feelings instead of looking at a picture. Sometime the strokes of paint look like something. Those little sheep had been some rocks. Sometimes it is whatever occurs to me at the time. I have painted plenty that have turned into a storm when I add to it another day… So better hold on to your sheepskins you little sweet sheep.

TODAY WE GO FOR MY HUSBAND’S PSCYH EVAL

Because of the disability application, as a matter of course, the VA orders a psychological evaluation of the person to see if PTSD is the cause of their symptoms. In tomorrow’s post I will say how that goes. I don’t really know what to expect.

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Colorful Puddles After a Rainstorm, Acrylic on Canvas

Besides the sweet smell in Texas when “It’s fixin’ to rain”, one of my favorite things is puddles after a good rainstorm with reflections of a now bright sky. I love to put those last touches of bright red in the fresh puddle that make the road rise up.

I express this feel of a scene often in my paintings because it says “Look up, the torrent is over and it’s a brand new brightness.”

Being a caregiver has been a bit like that rainstorm.  But, it has been helpful for me to find acceptance in who I am now. I don’t have a husband who is there for me to love and care for me.  Instead I’m left with a man who sometimes packs up because it’s time for him to go home.

But “The position has been filled”… as was succinctly stated to the dog standing outside the door in Mary Poppins.

…Filled by the One who makes a storm, knows fully about the puddles, the colorful brightness, and how to fill my artist’s heart with joy.

img_4216-1“Every Little Thing’s Gonna Be Owlright” is a canvas bag I painted. Such a cutie!!

Dementia is progressive.  It does not get better.  There is no cure. And we who care for someone with dementia are at risk ourselves due to the ongoing stress of it all.

That brings me to a question I saw posed online, I think it was a writing prompt.

Wife, or Caregiver?

I think the question could be expanded to…

Husband, or Caregiver,

Daughter, Son, Granddaughter… or caregiver... and on and on.

I will speak to the spouse/caregiver because it is what I know and live.

An answer to the question is found where the lines got blurred between my husband as spouse and me as fully caregiver.

I am so glad to be able to share this information because I believe it is so helpful for the mental health of the caregiver.  And, for those of you who read my blog, you know I am an artist so forgive me, a non scientist, as I get “all scientific” with my seven stages…

First I ought to say… My considering myself to be a caregiver and no longer a wife happened incrementally over the course of several years.  Here are the stages we have been and are still going through:

The seven stages of my becoming a caregiver.

Stage Zero:  (All spouses take care of each other throughout their marriage – sometimes one spouse needs more care… and it can’t ever be seen as equal as the spousal role is to love the other – so this stage is a reminder of that…)

Stage One.  Unnoticible to those outside the husband/wife relationship:  husband has small changes in his personality, husband apologizes, difficult time is covered over by husband/wife relationship. (+/- 1 years)

Stage Two.  Wife confronts husband on his now more apparent personal changes, gets angry pushback.  The relationship suffers. (+/- 1 years)

Stage Three.  Husband is unable to concentrate on work and otherwise is acting in outlandish and inappropriate ways in his business, but, thankfully, wife is able to talk him into retiring.   Still, he is able to hold a conversation, be excited about politics, and he still reads.  He still drives.  The family still plays games together and he can fully participate.  Wife is able to talk her husband into retiring and moving out of state. (+/- 1 years)

Stage Four.  Husband is acting in inappropriate ways socially and wife talks him into letting her come along to his next doctor’s appointment where he is diagnosed with mild cognitive impairment.  Husband no longer reads yet spends all of his waking hours watching cable news.  (+/- 1 years)

Stage Five.  Husband gets confused with bill paying and has trouble concentrating, begins to have problems working his television.  Wife takes over all finances. (+/- 1 year)

Stage Six.  Wife has husband evaluated for driving the automobile.  He loses his license. Husband begins believing he is running a business and also begins thinking “he needs to go home” and will pack his bags.  Wife sees that the business ideas are being stoked by his constant web surfing so wife takes away all electronic devices.  Wife is able to verbally talk him out of leaving.  Husband is unable to stay home alone.  (+/- 6  months)

Stage Seven.  Wife has now crossed over into full caregiver because husband has become incapable of understanding most things.  Wife is able to manage his television viewing habits so as to have him watch for the most part, good movies and reruns of shows like I Love Lucy.  Husband is now completely unable to play a family game.  Husband has times of psychotic type behavior where he, in agitation, tries to escape.  Will walk down the street and not want to come back.  Wife has needed to call the police to come help with this problem.  Husband does not wash himself even if he is in the shower and will put on the same dirty clothes afterward.  Husband sleeps in his clothing.  Husband cannot at times find the bathroom though there is a label on the door.  Cannot find where his bedroom is.  Husband will want to eat though he just ate a full meal.  (3 years… and counting).

So, for me it was not wife OR caregiver.  It is wife has BECOME caregiver.

It is not just a war of words, though. Tomorrow I plan to discuss how defining myself as caregiver has helped me.

Is every little thing gonna be owlright? What do you think?

Me… and my ideas… and showing off my haircut. FYI in case anyone out there wonders… My hair went totally white and so I just… go with it. And now on to…

Respite Care Reform

Please read yesterday’s post where I describe respite care.

(Don’t get me wrong… I love the place and the people where I take my husband). But if I were asked…

I have been taking my husband to adult day care for a couple of years now, and I have some ideas for improvement…

What if there was/were

  1.  curb service drop in/pick up so that the person using a walker would not ever have to walk across a parking lot and the caregiver would not need to get out of the car. My husband is physically able but I see many that are not.
  2. a full service salon for haircut and nails during the times they are in care?  It isn’t easy for caregivers to do this.
  3. beds for nap time because having a rested person to pick up would be nice. For my husband the respite care is busy busy. Too busy.
  4. daily, all day care for working people.  Maybe employers would allow their employees a little allowance to assist with the expense of this.  Or, maybe there could be some tax remedy to allow people to afford it.  Our day care is five hours, three times a week which I am thankful for but it doesn’t allow me enough time to work.
  5. a calm schedule with activities for people who want to participate and movies or television for those who like to sit and watch.  It would be nice to keep the person from being worn out from the day.

Sometimes we people who give care forget about our own needs, independent from the ones who depend solely on our energy, our kindness, our patience. Respite allows us to recharge those finite resources. If you aren’t already seeking respite… go out there and find it.

I think I have mentioned that I have

S

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and walls of my paintings at my house. Granted, many are because I’ve been learning, practicing and developing my personal style over the past six years that I have been a caregiver.

And trying to stay sane.

And, sanity… brings me to how much I appreciate RESPITE CARE.

Before I begin to discuss respite care I feel for most people not close to the dementia world I should begin with giving my best definition:

Respite: a short break from engagement in something, anything really, that is especially difficult.

Remember respite during primary school days?

School recess is a respite we most of us can relate to. It was where we once so easily threw off the frustration of the strict classroom and climbed to the top of the monkey bars to hang by our knees.

Remember being a new parent? (Or business owner… I think anything that is truly your “baby” would compare to the feeling…). As a new parent I remember feeling at a loss when I went out without my baby for the first time.

It was a similar experience when I took my husband to the adult day care. I sat in my car with no plan. Now what? Who am I even?

A couple years down the road I now know what to do.

Respite care is never long enough. If I choose to paint I lose track of time which is why I don’t usually paint. I don’t mind at all painting when he’s home. So even if I have a compelling artistic venture I choose not to paint during my respite time. Instead I…

  • run errands
  • have coffee or lunch out with friends
  • make a great grocery list and shop carefully for as long as I want
  • do a household task that’s hard to be in the middle of with him here
  • pay bills
  • make important phone calls
  • study my bible and memorize scripture
  • read a book
  • clean out a closet, a drawer
  • make plans, lists for things I need to do but am putting off… like tackle the garage. (The garage is last on my list (always). Does anyone else have the problem that the garage feels… foreign and full of spiders. I need to take the space over and make it work. Well I will be inducing a little self therapy on that very soon… like next Spring… I kid, really.)

Respite ought to leave a person refreshed. Cleaning out the garage during my respite time might do that in the end.

Tomorrow I will discuss a few small Respite Care Reform ideas I have that would help me. And, since respite is for me, the caregiver, I don’t mind divulging my ideas.

And, look for a future post with the great garage clean out. I think.

I Love You More Than Cupcakes…

… A writing prompt from my kitchen.

Have you had a store bought cupcake recently?  Not a homemade or from a grocery store bakery.

No, a cupcake from one of those cupcake shops that have arisen in strip malls in the past few years.  Our town has one with cupcakes and gelato.

A little comparison: Yesteryear’s cupcake was 2” cake and 1/4 “ frosting. Today’s are basically buttercream frosting and filling encased in a little cake … to hold it together.

i love ‘em. My favorite? Peanut butter cup.

I will never be able to go back.

DEMENTIA SWEET CRAVINGS

One of the side effects of dementia is a new sweet tooth. And it’s my husband with the dementia.

My husband, before dementia, didn’t especially like sweets.  If we ever had something he’d just want one little bite.  I’ve always wanted anything that was dripping in childish amounts of  sweet. My husband, now that he has dementia… is more like that child.  He will eat handfuls of candy and will want a large chocolate milkshake with his cheeseburger.  When getting cookies, he asks for several.

I’m trying to think of the earthly things I love more than a good cupcake.

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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!

Melting Roses, Acrylic on canvas

The High Cost of Dementia Care:  The Process of Applying for Veteran’s Disability Benefits Part 1 of (Many?)

For “memory care” in our area the price tag is about $4,500.00 per month.

So, I am having to start thinking about how I’m going to be able to pay for the care my husband will be needing.

As I am finishing up this post, he walked out the door and I went to get him. He said he was planning to visit people. Good thing he was good about getting in the car. He isn’t always. It helped that our daughter ran down the street after him and I think I unnerved him with a big flirty smile “Hey, wanna ride?” Side note: a smile wins!

Being a Vietnam veteran, my husband began applying for disability after he began meeting with the veterans at our local VFW several years ago. It was before he was diagnosed with dementia.

So, he applied for it but because he was already mentally unable, he did not follow through with the complicated process.  I didn’t know what he was up to with all of it, he was busy busy with many things.

He was still driving.  He’d drive himself to the courthouse and ask to talk to the judges.  He was a retired lawyer, so he was used to being able to do such things.  You know, he even got himself appointed to the town council.  (I had to help him get out of that gracefully). If you didn’t know him well or didn’t spend too much time with him you’d perhaps think he was ok at that time.

After I finally took over the management of our family’s finances, I gathered up all his messy papers he had crammed in a cabinet and because they looked too important to toss I put them in a file.

I pulled it all out last week when I was looking for something else.  It was an application for disability.

We resubmitted the old application paperwork even though it was on an old form. The very kind man at our local VFW helping me said that he thought they might want to have it on the newer form but thought he’d give it a try.

While I was in there in my hour long meeting with the man, a line of veterans had been forming outside the door. One of them wished me “good luck” which I kinda think means it’s not going to be easy.

I was given a greater understanding of some of the magnitude of the Vietnam war after researching the disability application process. I found a very very … very long lists of our ships that were in Vietnam. And my husband was on one of them.

It is both humbling and surreal that I am following this process through that he had begun.

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A Book Break from Caregiving

We caregivers don’t always get a break. We caregivers don’t always take care of ourselves, neglecting our physical, intellectual, or spiritual needs. We have put ourselves last and then we are too tired to take the steps to care for ourselves. Our life pursuits are put on hold to take care of our people.  Well, I’ve been at motherhood and caregiving long enough that I thought it was high time I began a little self improvement.

So, this summer I decided I ought to read more.  So I set about the task. Here’s what I’ve accomplished:

  • Pride and Prejudice by Jane Austen (simply because it is the book that Meg Ryan’s character’s favorite in “You’ve Got Mail”, one of my favorite movies). I liked the book but am not compelled to read any more by this author.
  • Ghost Boy by Martin Pistorious.  I chose this one because it is a true story of a boy who got very ill and couldn’t move and ended up having a caregiver in his day care find out that he actually could communicate and he used one of those same computer devices Steven Hawking used and even got a job working in the computer field.  He went on to marry in this amazing personal triumph story.  I was excited to find out that he and his wife are expecting their first child.
  • Of Mice and Men by John Steinbeck because I was looking for a classic and felt I needed to repent fore of reading the Cliff’s Notes in high school.  If I would have realized it was such a short and easy read I would have just read it.  Well, we always knew that cheaters never win.  Just one more example.
  • A Distant Mirror, The Calamitous 14th Century by Barbara Tuchman.  I picked this book because I had tried to read it about twenty years ago and couldn’t get through the first chapter and gave up.  It is a very hard read but boy is it interesting.  I highly recommend it and it does help that I have Wikipedia in my pocket for looking up all kinds of stuff.  It’s taking a while to get through it, but it is a book because the author expects the reader to know more than about history than I do. I read it very slowly. It is to be savored even though it is about that very grueling time.

How do I have the time? I’ve got no break from caregiving, really, I just read anyhow.  And if my husband sits with me I give him a book to read too.  He likes to go through a book even though he doesn’t understand what he’s reading any longer. He’s just glad to be able to sit near me and “read”.  And, on the break from art… it doesn’t mean I don’t art at all.  I will just balance it out with a little reading. And, of course, I made my own art bookmark.  Isn’t it pretty?  I use it to place under the text to help my eyes track.

I’m also reading books in the Bible.  I’ve read all but Revelation in the New Testament and, along with my bible study group, we have read through Genesis and are into Exodus the part right after the plagues and where they have taken a detour in the desert.

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This painting was a quick study of the use of cadmium red, cadmium yellow medium, ultramarine blue, and titanium white.  The blue and red mix almost look black, a deep purple for sure. I like the glow that the yellow makes. I wanted to create movement in my strokes of the crashing wave and the clouds, and the birds. I put on big chunks of unmixed paint and moved it around in the messy waves. I was going for messy and free.

Dementia and Art

Creative expression through painting and writing is good for me, the caregiver. But, my husband isn’t interested. Dementia made him lose his interest in everything but me and his TV.

I’ve read articles that recommend encouraging a person with dementia to participate. But, my husband doesn’t want any part in it. What he does like is to sit across from me while I am painting. Once in awhile he gets up and walks around to see what I’m painting before he leaves to go watch his television.

At our house we art all the time. I like to work in clay, paper mache, ink, watercolor, shaving cream with food dye or acrylic paint… I’ve dipped greeting cards and t-shirts in the shaving cream paint. I make T-shirt’s and books for my grandchildren with “lift the flap” that I cut out and paste in and of course I put my original paintings in them. Once I made a book for my grandson by staging pictures with a tiny stuffed matchbook mouse and took pictures, sent to Walgreens for printing (and they are done in an hour… yay) to put in a little photo album where I hand wrote the story.

My Workday: Yes, I am working here.

My daughter starts her homeschool day at 8:00 am and I try to maintain order in myself as much as possible because I don’t want us to fall into chaos here. So we get up and get dressed – no caregiver pajamas allowed here. And, then I start “work” as well.

I begin by writing my blog, or better yet, edit it if I have written it the night before. Then I go on WordPress to reach out to others that are doing the caregiving as well. I haven’t yet found anyone doing caregiving and homeschooling all at once, but I can’t be the only one.

While she is homeschooling, I feel that if I keep myself occupied on these things I think of as my work then I can build my career as an artist and a writer even though I’ve been unable to work these past six years when I was forced to retire as paralegal. So, when she is doing her classes, and in between grading her assignments, I write, paint, plan meals, cook, clean, laundry, and of course, practice the fine art of caregiving.

And, of course, I’ve mentioned before that I am beginning work on a Patreon account as well as learning how to make videos of me painting. Today I made a video of my painting the above ocean scene and had technical difficulties that I have a plan to solve for next time.

I’m glad to have my teenage daughter still at home because she joins in with me on projects. It would be a lonely existence here without her bright presence.

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The Blank Canvas

I have been keeping myself from painting any new paintings.

For the past several years in “forced retirement” taking care of my husband who has early onset dementia, I have been on a self quest to learn to paint which has led to a collection of stacks of paintings ranging from beautiful… finished, mostly finished, and ugly as sin acrylic and oil paintings.  So, I’ve been taking all of those old paintings and scraping off the old paint and repainting.

But, I’ve been missing the hope and possibility in the fresh start to a brand new blank canvas begun painting.  I’ve been imagining myself painting on this fresh white canvas this morning.   I will, as I always do, study lots of pictures and look around at real life shape and shadows and I will explore the color temperature in everything.  And I hope to get right on the canvas what starts appearing in my heart and mind.  Over the years I have had the opportunity of time to be able to explore who I am as an artist, and to learn from others, but mostly to learn from the experience of doing it.  That makes me excited to start a new painting on a brand new blank white canvas today.

I won’t only be painting, but also videotaping it for my new Patreon account to show my creative process.

I love the white canvas.  I start imagining how the brush, fully loaded with color, will glide and dobble and scrumble and what the mist of water might do and the accidental blemishes where colors collide that end up being part of the beauty.  Many artists begin with painting a “ground” of a yellowish paint all over their canvas.  But, I like to begin with the white.

I am inspired to create where there are possibilities:

A blank canvas, a blank page,

January 1,  a shiny kitchen sink,

A freshly sharpened pencil,

All school Supplies but especially the crayons and the box of watercolor paint,

My IPad Pro,

Sunrises,

Sunsets,

and God’s Hill Country of Texas.

 

 

 

glows, reflections, and shadows

Art Study:  Caregiver Reflections

I am sitting here drinking two drinks. Somehow I made it through the day without drinking much water so I’m making up for it now. So I’m downing the ice cold water and sipping the hot tea. It’s like fire and ice.

I can’t help but notice how cool the amber tea glows in the table. That cup is double walled and keeps the drink hot a long time. Then there’s the lights in the base of all three. The shadows are a grayish translucent, sorta almost purple. I am considering how that would be painted.

If got paid by the hour for my art I’d count this tea time in for sure…like the old lawyer time billing joke:

”I saw you on the street. Thought about your case. Turns out it wasn’t really you. Time:  two tenths of an hour”

This is precious time. The house is quiet.

Dusty Path, Acrylic on Paper 9×16

Pathway Painting

In the scene I am currently painting… the rain clouds just left and the side of the road has become a temporary stream. Originally I painted this with grass in the foreground, then I just had to make water appear there which is what happens right now in all of my landscape pathways. I think it is a reminder that though I might be traveling on a seemingly unendingly difficult path, refreshment is provided.

My method is to paint and put aside the painting… I’ve done that for the past several years… it may not be a good method, because that way I have stacks of paintings – mostly finished, some signed, but they are going nowhere.

It’s okay, though, I catch myself a little break. I like this pathway painting, the subject matter was out of my morning thoughts. And, I am happy to put it in the pile of all of the others.

Psalm 16:11

Caregiving Vignettes “Reading with Dementia”

My husband’s Alzheimer’s and bvFTD dementia doesn’t keep him from reading, but it does keep him from understanding. He will pour over the morning paper. This morning, being Sunday, we are reading yesterday’s paper, with no complaint from him, since he cannot remember reading it yesterday. He maintains the posture and the seemingly interested voracious reader he once was when he would read encyclopedic books of world history… for fun.

His former self, smart guy, lawyer, he’d stay up late at night reading, reading… I used to put my knuckle in one ear and push my other hard into the pillow with the sheet over my head so I could block out the book light and sound of the pages swishing across the front of his chest.

So now he reads really just anything. He can still read out loud and you’d think he knew what he could comprehend because he can read it. Yesterday he was reading a local phone book that came in the mail. The pages he was reading was full of names and phone numbers. But, if you didn’t know what it was you might think it was a law book.

The “reading” keeps him mesmerized. He loves the pictures of little children and babies our local small town paper always highlights. He usually shows them to me with a sloppy grin on his face. In his previous life he wasn’t so interested in the sweet things. Pretty soon he will get up and ask me to help him turn his television on.

In the above image foreground sits my portable table easel and it speaks for itself.

Today I plan to launch my Patreon account where I will show my current paintings, poems, and short stories. Because in the midst of the dementia care, I art.

Caregiving Vignettes: “Playing Games with Dementia”

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This is the bottom of one of my clay owls. I think serendipitous moments are my fave

Caregiving Vignettes:  “Playing Games with Dementia”

We include my husband with board games though he can’t actually play. Since games are supposed to be fun family time, our way of playing does indeed fill that need.  He makes up all his own rules and we just let him. We have fits of giggles.

I sold the above clay owl for eight dollars at a local market. Sometimes I wonder why even bother with the art… how long it took me to form and paint and finish the little guy. But he was a moment of serendipity.

We played a game of scrabble where my husband played his words sideways and he didn’t mind that we kept removing his letters so we could play all our high scoring words .  We are serious scrabble players  and have many hours logged of family time in scrabbledom over the years.

These are moments of serendipity and craziness.  But when I consider my poor husband’s brain that seems so scrambled now… these times also bittersweet times for me