This is dementia. It's not just a memory problem.
What you read in this blog is purely my own personal experience in dealing with Lewy Body Dementia every day.

This is not meant to offer any medical or legal advise.
I have no professional training in care giving or experiences in formal writing.
I'm just a woman that loves her husband deeply and wants to provide him with the best quality of life he can and chooses to have.
My prayer though this is "Lord, What am I learning from this; how can I use it help someone else and to glorify You?"
If just one person finds comfort in this public blog. I will feel like it was a success.

Saturday, June 18, 2011

Stand up, dust off, get back on the Lewy Body Dementia train

SOoooo, how do you handle a ghost in the bed?

I don't know either so I just left it there.

When I was a little girl I lived in NY state.
The winters are cold and snowy.
Ice skating is popular.

In winter our long and rutted out driveway had ice in the dips.
To an 8 yr old this was prime ice skating property.
Bundled up and wearing my skates I spent some happy moments driveway skating.
Then the unexpected happened.
I slid and fell.
I fell hard.
I cried a lot.
Sitting on the ice, cold and hurt I couldn't imagine anything hurting more.
I couldn't get up.
Then my Daddy came outside.
He checked me over to see if I was okay then he picked me up and carried me into the house.
He helped me get my skates and coat off. He placed me on the couch with a blanket and brought me hot chocolate that he had made.
That feeling of safety and comfort still remains with me.
That was 40 yrs ago.

After our big fiasco the other night I spent a day decompressing.
The pressure was all coming from myself and that had to change.
I cried a lot, I was hurt and I couldn't think of anything that could hurt more.
I prayed for comfort but I couldn't get up.
Then my Father in Heaven heard my cries.
My support team came running,
err typing,
prayer warriors, well wishers, encouragers, family, friends, my list is long for emotional support and I am so blessed to have them/YOU all.
You picked me up, helped me remove the constricting feelings of guilt and wrapped me in your love and offered me emotional hot chocolate.
Thank you for caring.
Thank you for reminding me to be gentle with myself.
I am.

Yesterday Hubby slept all day.
Today he was having a good day.
He recalled with ease several things and incidents of long ago.
Communication has been good too.
He willingly participated in a family gathering when his daughter came to visit us.
We hadn't seen her for quite a long time and it was good to catch up.

Today is an easy day. That is not to say it doesn't come with it's challenges and odd questions or proclamations but I deal with each thing as it comes with my own self awareness for reaction.

I will try, try being the word of the day, to react to upsetting words in a different way.
I think 3 yr old grandson taught me this lesson.
When 3 yr old is upset because he can't have more candy he pouts, he whines, he cries and pleads to have his way. Most of the time I ignore him and tell him if he chooses to behave that way he needs to do it in another room away from me. Other times it means he is ready for a nap and this upsets him more and he declares that he hates me.
I know 3 yr old does not hate me.
His words do not bother me. He's 3.
I just remind him it is his right to feel that way and there are no laws against it but I still love him anyway.
My heart doesn't ache when this happens, my anger doesn't flare.
It is what it is and it doesn't last long before I am reinstated back to the "Happy" that 3 yr old loves "big".

This will need to be the attitude I develop with Hubby.
It wont be as easy looking into the angry face of a grown man.

Will I succeed?
Probably not all the time.
I'm not superwoman.
Thinking I can handle all things all the time is a false idea.
The best I can do, is the best I can do.

I'll fall apart and fall down.
I'm not perfect.
I'll make mistakes.
I will use and have regrets for harsh words.
I will forgive myself and continue to love.
Oh my goodness...
I'm human with human feelings.
And you know what?
It's okay to be human.


  1. Yes, it is GREAT to be human because we experience love!

  2. Our father sent his son to earth to be human. He knows how difficult it is. He is always there to pick us up, Kathy. We just have to cry out to him, as you said you have done. :) He loves you and he is always there for you!! ♥


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