Our Local Paper Coloring Book Section for Christmas

Visiting My Husband on Day 29 of 210 of no sweets

Bringing a coloring book is my favorite way to visit my husband in assisted living. He doesn’t color too much in the books anymore but he sits and looks through them and seems to like that I’m coloring. There are upon occasion others who will come around interested as we sit at the dining room table so I will tear pages out and hand out colors and encourage them to join in. Pretty good and relaxing way to wile away assisted living visits, otherwise I just don’t know what to do. I see other spouses come visit and they just sit and hold hands. I either color or if it’s a nice day I suggest we walk on the sidewalk out back. He always says yes to that.

Today though the visit was strange. I was there at the table and he sat for a little while looking through the color book and then he got up to go watch television. Usually he wants to stay right with me.

The workers there asked if I’d help with the Christmas decorations, painting Christmas trees for each resident on construction paper which I of course enjoyed doing. When I left, the nurses were hanging greenery and lights. They decorate for each season, successfully creating a homey feel. My husband was engrossed in Gunsmoke, so I gladly slipped out.

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

I went yesterday to visit my husband at his assisted living, Morning Star Memory Care. The story is in the poem below.

With a little Google sleuthing, Heather, the young caregiving attendant found that Adeline died two years ago.

Here’s the picture of the book and what fell out of it….

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A Book of Prayer by Helen Steiner Rice, a book found at Morning Star Memory Care, Fredericksburg, Texas

For the Giver of Books

A Book of Prayer

By Helen Steiner Rice

Was found on the bookshelf

By a visiting wife

Trying to find him

Some relief

Her husband’s dementia

was causing her grief

But opening it up

Its stiff spine told its story

This book never read

Was like a book with no glory

Like a doll never played with,

Dressed fancy on shelf,

Collectible car fifty years still in blister

Or a heart never loved

This written word, its pages not turned,

And heartbeat never heard.

Oh Miss Helen, your book!

She’d now take a look

Then out of the middle

Tumbled postcard, old photo

Of a lady who’d received it

As a gift long ago

Quickly flipped back to the title page

Where the giver had inscribed

“To Adeline, in Memory of Paul, 1995”

The penmanship fancy, quite alive

She’d wonder, pausing the read

To study that photo, who was she

This Adeline whose gift

Has finally now been received

Leaving the book but thanking the Giver

Of life and hope and happenings

This book on prayer, that God is there

Found timely just like everything

~Julie Robinson

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.

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

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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.

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.

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.