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.

03 March 2010

The Brightside of Lewy Bodies

Lewy Bodies Dementia is a horrible disease of the brain.  It is an illness that destroys ones ability to reason, with hallucinations of people and animals becoming more prevalent as the plaques grow.  Life, eventually is suffocated, simple things like remembering how to swallow food being the beginning to the end.   I'm learning that it's important to hold onto the good days because these will be the memories that I'll want to remember long after my mom has passed.

Lewy Bodies is a challenging disease to live with because it's not just my mom who has the issues, it's our entire family.  All of us are affected in one way or another.  Like plucking a string on a guitar, the effects of dementia sends a crazy vibration across all invisible and tangible barriers, no one is exempt from feeling the pain.  It sucks.  It sucks for everyone.

Now, we could sit and wallow in the pity pool, hiding and missing all the funny moments or we could look for the humor.  The humorous times that make us laugh and lift us up out of the sadness that can be pervasive like a swarm of termites.

My mom, she's been cracking me up.  For the last 2 days my dad has been visiting my mom; he passed in 1979.  He doesn't talk to her, he is just with her. 

Yesterday morning my mom got up excited.   "Susie!  Daddy was here.  I went into the bathroom and my feet were cold.  I didn't have socks on.  Then, I went back to bed, daddy was there and he put these socks on my feet.  He is so handsome."  My mom was giddy like a girl who is sweet on a boy in her class.  She giggled every time she talked about my dad.

All day she talked about my dad. 

"I wonder if he's home waiting for me?"  She said as we drove to her doctor appointment yesterday.  "Do you think he'll wait for us?  Hey, maybe he'll clean the house like he did the other night.  You know, he cleaned my room.  Made the bed.  He even cleaned the bathroom!  Oh, he is such a handsome man, I can't wait to see him later.  Do you think he'll come back Susie?  I hope he comes back.  I love seeing him.  You have no idea what it's like to see him after him being gone so long.  Do you think he'll stay for dinner?"

Is my dad really visiting?  I don't know.   This morning my mom was in bed sleeping, she was hugging her pillow like it was my dad.  She woke up and said, "Do you see him?  He's right here sleeping.  Be quiet, I don't want to wake him up, he'll leave if he wakes up.  Oh, he's so warm.  I love him."

My dad visiting is helping my mom to be happy.  She feels that he's near and part of her believes he's alive and goes off to work.  She always wants me to cook for him.  I tell her that he eats special angel food like my brother Ed.  That seems to make sense to her, so I use it as an explanation over and over again.

One day, I'm sure my dad will come for my mom and they can rest in peace eating angel food.  The brightside of Lewy Bodies is it brings loved ones back from the dead.


  1. I remember when my mother in law was living with us, she was diagnosed with dementia although they never were exactly sure what kind.
    After all my research I truly believe it was Lewy Body, the same thing my husband has.
    Anyway, Once she came to me in the kitchen and whispered to me and motioned for me to follow.
    I did.
    She pointed into the living room, peeked around the corner then in a whispered voice asked me if I saw that.
    I looked around the corner but saw nothing.
    I asked her what it was and she said 'him".
    I looked again and saw nothing and nobody.
    She got miffed at me and said, still hushed, "That naked man right there on the floor".
    Of course my eyes widened and I HAD to look again just to be sure ;-)

  2. Kathy, that's a great story! I would have looked again too. The hallucinations and the things the demented mind says can often be very funny.

    I found that if I go along with her hallucinations and talk to them, she remains calm. Before now the strange people hallucinations scared her - now I'm glad it's my dad that she sees and is excited to see him.