|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.