The Challenging Day

A sleepy mom, waiting for her ride to Day Care

God love my sister Ann, she bought me a Llewelyn Calendar for Christmas this year.  It's an awesome Astrological Calendar; I haven't had one in a few years.


Subconsciously, I've been avoiding getting one because the calendar identifies both challenging and rewarding days for each sign of the Zodiac.  

Do I really want to know?

The calendar has driven me a little nuts in the past.  I used to become obsessed with it.  Knowing when my "challenging" days are coming or if I'm in the midst of a challenging day, does something to my psyche.  


I begin to brace myself for a challenge.  Caring for my mom, every day has challenges, some days more challenging than the next.  


"Oh man... do I really want to know my tougher days?"  I ask myself.


Yesterday, I don't know what made me check the calendar, but I did.  Today is one of my challenging days; this month, according to the calendar, I have 5 freaking challenging days!  I hate it when the month brings more than 2 challenging days but FIVE?  

I brace myself.

I woke up this morning, mustering up all the optimism that I could.  I even jumped out of bed stating to the Universe, "Today is a GREAT day!"  I felt pretty good, was I convincing enough?


I woke up a little late this morning, only 15 minutes later than usual.  My mom, she was sound asleep, not in the mood to wake up.  Getting her up was challenging.  


I asked myself, "Hmmm, was this my challenge for the day?"


She didn't wake up in the middle of the night and remove her diaper.  Bonus!  No poop or pee to be cleaned up, how challenging could this day be?  


"Don't taunt the Universe Sue!"  I heard my inner voice scream.    Have I overcome the shadow of the challenging day hanging over my head, clouding my mind with apprehensions; what will today bring, I thought.


Suddenly, like a light switch turning off, mom forgot how to swallow her small supplements.  She had no idea what I was asking her to do.  She would reply to me in one word answers as though she understood, "Ok."  or "Sure."  Next? Nothing, she'd sit there and stare off into space.  


It's beyond freaky when she goes to Lewy Land.  No matter how many times I've witnessed it, it never seems to get any easier.  

Lewy Land sucks.

The clock was ticking, the time was moving closer to 7AM when Martha is scheduled to take her off to "school."  My anxiety began to bubble as my mom wasn't able to follow my simple instructions.  


Sweat beads began forming on my forehead; worried that my mom wouldn't be able to handle leaving the house today.  She NEEDED to go today, I couldn't handle a full day with her at home.  After all, according to the calendar, it is a challenging day for all Leo's!


I remained as calm as I could, deep breathing helped.  I was able to coax her to take recommended daily supplements.  She appeared to awaken as she ate her oatmeal.  I made and packed snacks while she had her breakfast.  


"I haven't had a sip of coffee yet!"  I thought to myself in horror... a challenge.  I was running on empty; I too was sleepy this morning.  

I needed caffeine. 

"Dressing... was this going to be challenging?"  I found myself thinking a negative thought.  I screamed silently, with my inner voice chattering "Stop!  Happy thoughts, happy thoughts... visualize warm sunny beaches in Hawaii... happy thoughts!" 


I asked God to help.  "Please God, let this dressing go well, we only have 20 minutes before Martha arrives."


My greatest fear is that mom will soil herself and need to be changed at the exact time that her ride arrives?  Again, I forced myself to change my thoughts and I began to recall the vacations that I've had over the years; fond memories that are helping me get through the daily ass wipe for my mom.

God help me.

Dressed, coat on and waiting at the door for Martha, my mom breaks the silence, "Uh oh.  I got to go."


"Now?!  Are you kidding?"  I replied with a stressed out tone.  


"Here's the challenge!"  I thought.  My worst nightmare, a vision that I've had repeatedly over the last few months; my thought became reality.  Mom has to poop, Martha was about to pull into the driveway any second and the bathroom is upstairs.  

Please dear God, PLEASE let us make it to the bathroom!

I left the door open, my mom's coat on the chair with her lunch bag in view through the glass storm door.  Rushing in a panic, I nearly carried my mom up the stairs and to the toilet.  Cleaning her and changing her pants was not something that I wanted to do just as her ride was arriving.  "Oh, God!  Please help me!"  I cried inside, holding back my tears.  I know from experience that my tears make matters much worse.


My pleas to the Heavens were answered;  she made it to the toilet!  Ah... now that wasn't so challenging.  However I chose not to taunt the forces of the Universe and showed gratitude for the blessing that my mom's business landed in the appropriate location... the toilet. 

"Thank you God!"

Learning from past experience, I put on rubber gloves, wiped my mom's fanny and pulled up her pants.  Nothing worse than having a feces mess to clean when her ride is waiting.  I've done this once and hope to never have to do it again.  The thought makes me shudder in fear.


Although my calendar told me that today is a challenging day, we made it through the morning without anything nasty to be cleaned.  My mom is out of the house and I have the day to get things done for myself.  

"Hello, Universe?  I'm grateful for the morning we had, it wasn't as bad as it could have been.  Thank you."  Sue

One thing that I have to remind myself about the Lewellyn Calendar, challenging days are only as challenging as I chose to make them.  I need to use the calendar as a tool to raise my awareness; lay low and not take things so seriously, especially stuff that I read.  


Like everything, the challenges will pass and the skies will bring better days.  There is no good reason to hang on to the challenges, they don't serve my higher purpose to achieve happiness.

My God wants me to be happy all the time.

Today, I choose to expect the best and the best will come.  It's up to me to rule the stars and not have the stars rule me.  


A popular Astrologer from my teen years (loved his reports,) the Cosmic Muffin, used to say at the end of his daily Astrological forecast, "It's a wise man who rules the stars, but it's a fool who's ruled by them."  Words that definitely ring true for me today.  I choose to be the wise woman today and rule the stars.  

I Want to Go Home

Care Giving has challenges and one day when you least expect it your loved one will inevitably demand, "I WANT TO GO HOME!"

It is unnerving the first time you hear those words come out of your wards mouth, especially when they are already at home.

Confusion and disorientation take over, logic and reason are out the window.  Arguing about reality leads to conversations that end in a stalemate; frustration and anger often take the front seat in the mind of the carer.  To the demented mind, what they believe is true is true, period.  End of topic.

I have learned this phrase to mean that she's scared.  Hugs work really well.  Reassurance that everything is going to be OK and words of encouragement that she's safe and secure helps ease her fear.

Mom would run out the door and head down the street looking for "home" so often that I stopped sleeping soundly.  I always had one ear open, listening for foot steps and doors closing.

The first time she took off, she was mad at me because I wouldn't take her home... she was already home and no matter how many times I told her, "you're home!"  she wouldn't believe me.  Eyes off her for only 10 minutes; backyard gate wide open and mom off on a mission to find a home that doesn't exist.

Instead of arguing with her, I now say to her, "Oh?  You want to go home?  Come this way, I'll take you there, follow me."  I take her to her bedroom and show her all of her things.  She looks at me in amazement and says, "Wow!  How did you do that?  Thank you dear."

Sometimes I say to her, "It's right down the hall over there, Josephine Way, follow it all the way to the end and you will be home."  That often works depending on how confused she is at the moment.

Thinking that I needed some sort of prop to give her a sense of control, I had a key to the house made for her.  She wears the key round her neck on a pretty chain, it is a piece of jewelry to her.

Occasionally she is argumentative about being home.  During these times, I take her to the front door, she takes her key from around her neck and puts it into the lock.  When it fits, she will say something like, "Gee, that's nice."  "I'm glad I'm home."  "Ohhhh, how'd you do that?"

My mom NEVER takes her key necklace off, not even to shower or sleep.  The key has become her security.  She feels safe with her key, rarely do I hear her tell me that she wants to go home.

Since my mom has been wearing her key necklace, she doesn't wander away from home.  More importantly, she doesn't wake up in the middle of the night in a panic, dressing herself, packing a bag and heading out the door to look for "home."

The key.  Who knew that a tiny piece of metal could help answer the question, "I want to go home."

I Love Summer

Yesterday was a fun day out in the backyard.  My mom was excited to go in the pool and put on her bathing suit  when she got dressed in the morning.  She came out of her room in her new bathing suit, water shoes and topped off with a straw hat.

"OK, I'm ready to go swimming!"  She exclaimed as she came in to the kitchen.

My mom sat out on the patio and waited for me to open up the pool while she had headphones in her ears, listening to her favorite music.  I planted seeds in my garden.  A perfect summer day.  I love summer!

The sun was hot.  I told my mom that I would open the pool and then clean out the pine needles so that she could go in.  She didn't hear me.  I thought she did hear me, but oh was I wrong.

I was in the pool cleaning the pine needles and my mom started to yell at me from where she was sitting on the deck.  She was mad because I was in the pool and she wasn't.  I didn't tell her that I was going in.  She got up from her chair, said something and stomped up the stairs to go inside.

Oh boy.  Here we go again.

I finished my task, no sense getting out of the pool until I was done.  Walking in to my mom's room, she had her door shut.  She never shuts her door unless she's mad.  I knocked and went in.  She was laying in bed, in her bathing suit... mad.  Really mad.

"You do it to me all the time!"  She hollered.  "You always do things to screw me up."

At this point, I was confused.  I had no idea what I had done to piss her off.  One minute she was happy and the next she was on a war path... with me!

Calmly I spoke to her, like you'd talk to a 6 year old who was having a temper tantrum.  "Awww, come on Ma.  I wasn't doing anything to piss you off.  I was cleaning out the pool so that you wouldn't have dead bugs and pine needles.  You know how much you hate the floating things in the pool, right?  Come on, come in the pool.  I cleaned it just for you."

My mom wanted to go in the pool badly but not before she attempted to make me cry.  I didn't cry.  She got out of bed.

"Here, let me help you put on your water shoes."  I said to her.

"No, no, let me do it myself!"  She replied back.

She tried to put on her shoes but had a little trouble, so I held the shoe open which made it easier for her to slip it on.  Back we went to the patio and to the pool.

Climbing up the ladder my mom said, "No, no, let me do it myself!"

She did.  She got into the pool like she's been doing it every day of her life.  My mom smiled and laughed.  She kicked her legs and held onto floating toys that would get away from her, dunking her into the water a little.  She came up laughing as she said, "Oh, my hair!  It's going to get ruined."

The pool calmed my mom, it made her forget why she was so mad in the first place.  It was a misunderstanding, Ma couldn't hear me because she had her music playing in her ears.  I need to make sure that I explain everything to her.

I found a really great document for Care Givers on the Lewy Bodies Dementia Association website, it helped me to navigate the upset from yesterday with ease.  Here's the paragraph from their website where you can download the article on Dementia Care.

To get started, read this article on Dementia Care by Tanis J. Ferman, Ph.D, et al (July 2005) which provides caregiver tips on communicating, routines, wandering, aggression, exercise, sleep, moving day, scheduling home help, caregiver stress, and support groups.

Our day was great.  I gardened.  I went in the pool.  Everyone was happy, even the cats.  The cats played with ice in their drinking dish, chased bugs and even caught a chipmunk.  The cats played with the little rodent, making sure not to injure it.  Our cats have learned that dead rodents are no fun, they prefer to keep them alive and play chase.

I love Summer.