Michael’s Morning Star

Old tunes played on a keyboard with singing

By a man who knows how to do it, bringing

Clapping and smiles under hill country trees

Serving hope love and kidding

A big family are these.

Tired from activity

And the big Texas lunch

Of brats beans and burgers

Swigging beer with no liquor ‘cause happy is quicker

And joy found in more ways than munch

It’s now nap time so staff

Spring to usual day to day tasks

Of wheeling and walking and tending to those

Whose minds may have faltered but not their hearts,

Peace there’s found in these here parts.

All back home the pictures we share

With far away family feeling part of it there

‘Cause seeing the smiles, happy we look

Can’t argue with a good photo took

At Michael’s Morning Star Memory Care

~Julie Robinson

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

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.

All Colors Brightly Gleaming

It brightens a color

But, color, it’s not

When it’s cold it’s ice

When it’s angry it’s hot.

It once was a poison,

‘‘Twas all the rage

Of painted up faces

In the Victorian age.

An empty blank canvas,

Peace flags flying grace,

The hope of a Bride,

In Cotton and lace.

Full moon rising

And carved concrete fountains,

Pillowy clouds puffing

Up snow capped mountains.

From rocks finely made,

To glittering beaches stored,

All high and foamy cresting waves

Must crash their lives against your shore.

“What? Radiance in the making!

Why must you come to such an end?”

“Because”, says he, “I get mixed up

When I get brushed on, my friend.”

White

~Julie Robinson

I just love this month long poetry writing challenge. I’m stuck on colors right now… I think I may do brown tomorrow.

The poetry writing has come at a good time for me. I’ve been sick with a bad cold and it’s got my poetry lights turned on. And it’s giving me something to think of as I go about my usual day of caregiving.

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For awhile I was churning out little clay animals, mostly owls, but I decided to make a turtle here and I snapped it’s picture as he looked like he was trying to climb out.

Feeling Stuck

I got a bead stuck up my nose… in all honesty, I stuck a bead up my nose when I was about eight years old and had to go to the doctor to get it out.  When you get anything stuck anywhere there is a franticness that sets in.  The bead gets dug even deeper, the kid with the elbow between the chair slats wedges even tighter (one of my kids).

When my grandson came to visit a few years ago he got his finger stuck in my pantry door.  Anything stuck makes me feel so frantic on the inside and his wailing really made made it worse.  I highlight those stuck moments in my mind along with other painful moments like falling off my skateboard.  I thought I could go faster if I ran and jumped on it.  I went up in the air and landed on the concrete where I felt like I kept landing… it was a strange sensation… and I remember laying there looking up at the sky and plumeria trees (we lived in Hawaii) and boy do I remember having to go to school the next day and sit.

What do you do in ongoing life stucky-ness?   Being a 24/7 caregiver for a person with any illness with no end is stuck time that drags on.

We are stuck in my husband’s dementia.

Usually I deal with it better.

Today I am not feeling well.

I feel like I’m coming down with a cold which is making me feel aggravated with his telling and repeating all his weird delusional tales he makes up.

Stuck in dementia… trying to at least emotionally climb out like the painted turtle above.

 

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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.

 

 

 

 

 

 

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..

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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.