Oh! #Octpowrimo, 25 days into the month of poetry.

Oh! The creative push to write a daily poem for Octpowrimo month has helped me write descriptive scenes in my fiction writing giving it better rhythm but not rhyme goodness me but that is a current problem! Anyone else?

Between fiction writing and oil painting and cleaning out my garage, I find myself “painting” poetic scenes in my mind.

And like a painting I have here still on my easel even before I add additional brushstrokes, I have done them in my mind first, same with the written work that needs additional keystrokes.

So, if that wasn’t enough stroking for one post… here is my poem for day 25: Strokes

Daily Strokes

Stroking a kitten’s like stoking a fire

Petting revs her purr motor higher

Arched high she springs to action

her claws get some friction, her fur some rough lickin’

Pouncing off she finds work of all kinds of hard play

And then there’s window sentry light sleeping where she’s keeping

A watch for her stroker, her purrfect re-stoker

To lay lap curled contently consumed by the fire of the day.

~Julie Robinson

Gilded

There it sits

The golden frame

Setting the painting

O’er fireplace hangs

Stormy seas bringing

A ship on the green

Waves swelling, telling

High venture at sea

Ornamental,

Brilliance beaming

Oil captured, artist dreaming

Come, move in closer now to see

What is happening

In that moment

Stormy day atop the wave

Rocking, rolling, treasure toting

Tell me, ship, you coming, going

Got time for a visit pay

Better, navigate my wall untamed

In the artist’s gilded frame

~Julie Robinson

Sometimes I like to imagine that something I have created on canvas is real. I have painted many ocean and beach scenes but this is my first attempt at a sailing vessel. I have the painting sitting on the floor trying to figure out a grouping with some other paintings. It’s actually an acrylic painting though it worked better in the poem to have it be an oil. And I have no fireplace, but I am considering building myself a faux fireplace with candles just so that I can hang it above the mantel.

My good friend Caroline Dechert so sweetly framed it in that beautiful frame and put it in a local art show for me during a time when it was difficult to get out and do things due to caregiving.

That frame is as fancy as friendship. Caroline called me and checked up on me and came to my house to paint with me. She has been one of my biggest art supporters. Friendship is golden.

I think this painting should be named: “Gilded”.

I put my husband in memory care last week and I left there feeling a little sad for him because of who I know he used to be. I saw a spark of his old personality and that made me consider the past 6 years I have been taking care of him in relation also to how long I’ve been raising children and it all made me feel grateful for the chance to take care of and love the people I have in my life.

They No Longer Living Here

It takes a lifetime raising children

Infant babe to driving teens

All the feeding, and the bleeding

Knees and hearts and hopes and dreams

It takes a lifeline helping old ones

through stages in senility

Never sure just how to do it

Stumbling through the years it seems

Raising caring loving praying

Over those you know are growing

Difficulties they are knowing

On them all your heart bestowing

The lives you touch when helping those

Who need a lift to help them through

Doesn’t matter young or old

It only matters that you do

But in the end you’re left a room

At the table, empty chair

The nest swept clean; so what’s it mean

That they’re no longer living there

~Julie Robinson

The Moment of Know

Twas the moment of know

The curtains they blow

The window pushed high

The caregiver low

Out of his mind

He went real slow

Now he wants to go “home”

It’s ringing, the phone

Can you come get your husband,

Did you know he’s not there,

No, I’ve been asleep,

I sleepily stare.

Dark is the town

Out driving am I

At a time that I never

Out of my mind.

~Julie Robinson

This is a true story except I’m not, I hope, out of my mind. Couldn’t get this in the poem but I hardly ever go anywhere at night and it was very mysterious indeed.

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

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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

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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.

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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.