I am not a doctor. I am providing information based on experiences that my mom has with natural remedies. The purpose of this blog is to help folks to educate themselves. Use this information with your own discernment.

21 May 2011

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.


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.


  1. Praying that a bed opens up soon my friend! You do deserve freedom! When it gets to a point we have done all we can do! My friend passed a couple years ago from alzheimers. I visited her at the home days before she passed. She had lost her abilitly to eat. She would eat for me but I didn't know if I was doing her any favors.

    I am sure my dad has some type of dementia but can do nothing about it as they live in Texas. Plus he has other health problems and takes too many drugs...pain pills etc. I can't get my parents to address this situation but when a dresser looks like stairs (plus tons more incidents too many to list)there is a problem. I am here in Washington and they won't move here. What can you do...not a thing! Well, enough of my problems but I do understand you have your hands more than full.I will pray for you mom to get a bed soon. Heartbreaking but I really do understand!You are such a good daughter! Hugs, Karen

  2. No one deserves to have to go through this kind of experience. The really awful part of it, is that it will have only one conclusion. The only variable is the amount of time that there is until that ultimate end.

    Actually, there is another variable, whether the caregiver survives with her own sanity and health intact.

    What a sucky situation you have going on. Find courage where you can. Know you have lots of support out here in Blogland. That doesn't really do anything to help either of you, I know. But if good thoughts, caring wishes, and prayers do any good at all, you know you have them in abundance from those of us out here seeing you and your mom going through this nightmare.



  3. Thank you Karen and Mellodee for your kind words, thoughts and prayers.

    It does suck and the ending will be happy and sad. I'm looking forward to my mom's death day. I will celebrate... I've cried enough tears during the time that I have cared for her.

    Lewy Bodies Dementia is the worst disease that I've ever had to witness.

    My mission now is to take actions to hold it off in myself. The last thing that I want in life is to end this lifetime like my mom.

    We are getting long term care insurance. I feel that we will have a better chance of having quality care in our old age. I can't depend on my family. I'm glad I found out now and not when it's too late and I need them to help me.

    I have learned that in life, there are no guarantees so we have to make the best of everything.

    Thank you everyone who is praying or sending me good thoughts. I think they are helping... just knowing that you are all out there helps me a lot. Thank you from the bottom of my heart.