6B64D5A7-C53B-4DEE-A28E-D330833A1606
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.

6ABFFE4D-DFDB-4FC4-AF4C-B8C5558FAE3C
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

T

A

C

K

S

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.