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?

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.

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.

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.

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!

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.