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.

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.

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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.

“Sketching” in acrylics. The Path

I was in the mood to do what I call acrylic sketching today (above landscape). I’ve been painting in my sketch book recently. And, I can’t wait to get back to painting on canvas. The paint goes on so differently on the paper. I love the paint on the canvas because there is some give to it as you paint. Why is that important to me? I don’t know, but I do like the feel.

I plan to do a painting soon on canvas of a hill country pathway like one that would’ve been painted in the 18th century, and I plan to frame it in an old timey ornate gold frame, the kind can only be gotten (affordably) at a thrift store these days.

Music and Dementia

As I was cleaning up from the day’s painting my daughter, who had been playing her precise classical pieces and jazzed up versions of her other songs, sat and improvised on the piano The House of the Rising Sun and my husband began belting with more feeling than most people sing… the lyrics: “There is a house in New Orleans…”

There are more interesting changes in my husband’s dementia than the delusions, hallucinations, forgetting and wandering and weird behavior.

Sometimes there are good things.

My husband never before cared much about music. He certainly never sang except for in church. And then I would have to strain to hear the proper tune to sing because he was so off.

He has developed a whole new kind of a talent now for singing. Knows all the words to all the songs though he doesn’t know the president, how old his daughter is, the city he’s in or what he ate for lunch.

And he’s quite on pitch now. Do you think that the difference in his musical ability is because now he doesn’t hold back?

We have music in our home all the time.

And when not at home, we sing CD’s … from old time gospel to John Denver to Queen.

“We are the champions, my friends….”

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.

What I’m working on. Painting and Praying.

A DRAMA OF DEMENTIA DRUGS

Drugs… past use

Dementia drugs have been unsuccessful in the past in treating my husband’s intermittent revved up delusional antics that can lead him to racing out the door on a mission, with me having to chase him down.

In fact about 2 years ago the drugs in his system, all prescribed dosages, interacted and sent him to the trauma center by helicopter.

So the trauma doctor took him off of all those drugs and instructed us to contact his doctor to see what drugs might work better.

Better than drugs?

By the time we could get in to the doctor and because the drug she wanted to try him on was not covered under his Medicare plan, I decided instead I would try to manage him drug free with redirect, a bottle of water, a cookie, my calm voice, a smile.

But dementia is progressive…

But dementia being progressive, worse over time, stopped at times listening to me. So I took him back to his neurologist who prescribed a very low dose mood stabilizer that I wouldn’t have to give all the time. Only if he began showing signs of what I refer to as “brick wall”, impervious to my behavioral interventions and usual winning ways with him.

I could sometimes give him a pill.

I have to say it is a strange thing as a wife not to be able to influence any longer the one person you used to be able to win over.

Why didn’t I just give him a pill?

I almost gave him one of those pills today because he could not settle himself down. He began being afraid it was going to flood because our local paper had flood watch as the headline story. He would not drop the subject. Would not be redirected. And of course there is never any ability to reason with him.

We just had a hard dementia day. All day.

I should have medicated him.

The F fell off my letter board and the reflection in the Bath and Body candle lid picked up the word.

Is it Fall yet?????? (Scroll down for poem at the end)

Fall isn’t necessarily my favorite time of year. I just like the season called Summer’s Over. And the beginning of that season is September 2. In my opinion, The best description for Fall was written by Nora Ephron, God rest her soul, and includes freshly sharpened pencils. (You’ve Got Mail)

I love the sense of expectation Fall ushers in where summer still tries to keep us in its doldrums.

When I was a kid we got brand new school clothes in the Fall that I wore to school even though I roasted. Anyone remember cowl necks.

This morning I was so glad to get pictures by text of my oldest daughter’s new Fall wreath she made which looked like something you’d see in a magazine. So I figured it was high time to replace mine from last Spring that had Easter eggs all over it.

So now I have a new Fall wreath on my front door. I bought mine from Walmart but who will ever know?

BRING BACK AUTUMN

Where did Autumn go?

Seems the word is rarely used.

Too quaint and dry and dusty,

Making Fall so overbruised.

Happy Fall? Really…

Let’s put our minds to higher thoughts

Of harvest, pilgrims, and Thanksgiving,

Around the table, olds and tots.

Bring back Autumn

‘Cause Fall… good grief!

It’s solely relating to a leaf.

~Julie Robinson

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Redirecting From the Rabbit Hole

I picture, at the entrance to the proverbial rabbit hole of wayward thoughts, desires, and actions, the place good people fall, a stern rabbit holding a sign:

TURN AROUND.

I can easily find myself ignoring those warning signs in the matter of my own creative passion. I’m a creative junkie. How can that be a problem? Isn’t creative expression a good thing? Not when it is out of order. And I need to keep order and boundaries for my home since I am also in the business of redirecting others, a homeschooling teenager and a severely demented husband.

You know though there is a lie I sometimes fall prey to that leads me bunny trailing.

“You’ve got a lot on your shoulders.  Go easy on yourself.”

That leads me to the rabbit hole, a world where my thoughts and desires are scattered in too many directions that I end up not actually accomplishing anything of real value in my painting and my writing.

My valuable creative personal resources hop off to everything else …

I think it important I should divulge the list of the attention stealers for me: (and, of course, there’s nothing wrong with doing any of these things).

CREATIVE ATTENTION STEALERS

Paper mache, clay, watercolor, charcoal, crayons, markers, pastels, oil pastels, embroidery, crochet, knitting, sewing, writing poetry, writing many comic strips about my yorkie, making little stuffed baby sock creatures, creating greeting cards with die cut shapes from aluminum cans and cardboard and whatever I figured out could go through the die cutter, creating stories and handmade and painted books for my grandchildren, painting elaborate T-shirts for my grandchildren. And rearranging and painting and redecorating my home and cleaning out and redoing all areas of the house, and making new recipes and special meals, and baking all kinds of treats and (trying to) make gingerbread houses. Then there’s my new fascination for reading and studying the 14th century. Now I’m not at all saying I have to give it all up but I’m just trying to prove a point…

I am a creative junkie.  (Safe to say?)

My creativity rabbit holes.  So… I am now trying to harness that creative energy and put it into what I have decided is most important for me to be doing.

I have to decide if the thing I am beginning to put my mind to figuring out, the thing I am just beginning to set my heart on, is something I need to spend my creative God given resources on right now or is it a rabbit hole that makes me lose the best parts of myself…. my heart and my mind.

So, what do I plan to do next.