Patience Is A Virtue

Waiting for the van

Just when I adjust and settle in to new behaviors that come with Lewy Bodies Dementia, the proverbial rug is pulled from under me.  The stress caused by the uncertainty of this horrible illness is beyond overwhelming.

Dementia feels like it's contagious at times.

Am I NUTS?

When will this nightmare stop?

We deserve to live a better life.  We deserve to have happiness and fun.  We deserve peace.   My problem these days is how do Brian and I get from where we are right now to the freedom land?

Mom's declining more and at a faster pace.  She could not eat last night.  She was agitated.  Nothing worked to calm her, not even the homeopathic remedy, Hyoscamous... this always worked in the past.

2:39 AM... I woke up.  I didn't hear anything but I had a feeling.  Opened the door... night gown on the floor.  "Oh NO!"  I thought it was my mother.  It was just her night gown.  Mom, was laying at the foot of her bed, naked and curled up in the fetal position, shivering.  All I could ask myself is, how long has she been laying here like this?

The day program called me twice this week.  "Sue?  Mum's having a bit of trouble.  Can we send her home early?"  A call that I received on Monday which created a pool of tears large enough to fill an ocean.

Only one good day this week; Tuesday.

Yesterday, I was exhausted from the episode with my hand wound.  I laid down for a nap while my mom was gone and being looked after by a team of professionals.  Just as I was drifting off into a deep sleep, the phone rang...

"Hello, Sue?  This is Denise.  I was thinking, your mum is having difficulty more and more often... maybe we should cut down her hours.  I'm calling transportation to see if we can arrange it to start next week."  A message that took a few minutes to register.  Was I still dreaming is all that I could think initially.

I have always known this day was coming, where the Day Program wouldn't be able to care for my mom.  It's not a dementia specific Day Program.  The dementia program that she had attended initially was a lock down type places which my mother hated.  The program that she attends currently, is awesome with outstanding aides and nurses that my mother has grown to love... they are not trained in dementia.

We need a bed to open NOW, Universe... do you hear me?

Patience has never been my virtue.

Patience and Perserverance = Success

My mom has been off gluten for over a week and hasn't had any hallucinations. Her blood pressure is gradually coming down and its way easier to manage her diabetes. She doesn't need much fenugreek or Camu Camu to maintain her sugar.

All along I had a suspicion that gluten was trouble because every time she ate some, her readings went high and she hallucinated.

I did have a bright idea that if I added fenugreek seed powder to the breads and cookies that I could make the simple carbs low glycemic. While it did help to keep my mom's blood sugar from spiking when she ate my homemade breads and pasta made with wheat, barley or rye flour, it didn't stop the hallucinations. It made them worse!

Documenting how my mom behaved after eating certain foods triggered a thought in our Naturopath Doctor. He mentioned Gluten Associated Dementia. I did research and found an article by the Mayo Clinic http://www.sciencedaily.com/releases/2006/10/061010022602.htm .

Now the article states that it's a "potential" link between Celiac Disease and Cognitive Function, but let me tell you, it's more than a potential, it's true... stop consuming gluten and you will feel better. My mom stopped gluten and now she's just a regular mom who has the ability to push my buttons to annoy me for her own enjoyment... just like the good old days.

I've been experimenting with gluten free recipes. Last night I made Coconut, raisin and spice cookies... gluten free. My God you would NOT believe how yummy these little treats are. My mom ate 2 with breakfast; we'll check her blood sugar 2 hours after her eating the cookies.

Life is getting back to “normal” where my mom reminds me at least once a week that she's still my mother. Gluten or no gluten, she still has the innate ability to make me a little nutty at times, not because she's seeing people or things that are not there but because she's my mother. Thank God she’s here to annoy me!

You know, I really do enjoy her more now. I feel as though I have a second life with my mom. I am fortunate and wicked happy for everyone, especially my mom and my family. Everyone has the opportunity to know Ma (or Gram) and enjoy the moments where she makes you laugh or bugs the living snot out of you! Amen.

The lesson I've learned again is that through my patience (believe me, practicing patience was a tough one for me) and perseverance, no matter how bad something was (or is, depending on the day,) if we stop, breath and wait a minute, change happens and everything gets better.

My dad taught me at a young age when I was bothered about something to stop, breath and relax because everything always changes, nothing ever stays the same. His advice was to wait it out. Great advice that I've used through out my life.

I believe life is like a big wave and the key is to ride the wave for as long as you can while enjoying the adventure. The longer you can ride the wave, the more fun it is and it will be much easier to catch the next wave for another ride of a lifetime.