What is worse than Alzheimer’s, Parkinson’s Disease or many forms of cancer?

Welcome to my blog.  I am launching this blog on November 12, 2018, which would have been my Dad’s 92nd birthday, and the day we celebrate Veteran’s Day.

This is a sad story of my dance with Lewy Body dementia (“Lewy”).   This is also a father-daughter story of my dad and me, before and after Lewy came to live with us.

dadandme
My dad, Lee and me – 2005

Stay with me, you will read the story of the young Lee, growing up in the Depression years.  He became a self-made business owner, the father of four daughters.  You will read how my dad and me carefully danced around each other for many years, but especially in the years dementia stole his mind and body.

The story, however, is not always sad.

There are moments of humor and hope.

Precious memories.

The promise of seeing Dad again in a place where there is no Lewy and no tears of sorrow. (See “Unclouded Day” sung by Willie Nelson on the Menu.)

It is the story of grace.

Memoir

This story is my memoir, my truth revealed to you.  Perhaps you will feel my raw emotions.   I’ll be honest with you, even when you question my decisions or motives.

Some names have been changed.   The story is at times sequential, at times topical.   I believe my father, the great story-teller, would approve of me telling our story.

Maybe you won’t agree Lewy Body is worse than other diseases.   Maybe you’re right, but for me, Lewy still haunts me.

This blog is for you

This blog is for the caregiver – past, present and future.  Please share it with others that need hope, encouragement and truth.

There will be nuggets of advice.   What worked for us? What didn’t work?  What mistakes do I live with to this day?   If I could see the future, what would I have done differently?

Resources:   The Resources page on the menu will have places you can go for help  on coping with Alzheimer’s, vascular dementia, frontotemporal dementia, Lewy Body disease, Parkinson’s and more.  I will also talk about resources in my blog.

Call to Action:  When you see “Call to Action” it means: Do not hesitate!

I want you to remember the dance is not always with your loved one; it is a dance around the disease.  At times it is a slow dance, at times it is a tap dance.  I mis-stepped, you will mis-step.

Albert Einstein is attributed to saying, “We dance for laughter, we dance for tears, we dance for madness, we dance for fears, we dance for hopes, we dance for screams, we are the dancers, we create the dreams.”

This is the dance with Lewy.

Comments

9 comments on “What is worse than Alzheimer’s, Parkinson’s Disease or many forms of cancer?”
  1. Sue Flesch says:

    So happy and proud you are doing this Nancy! Can’t wait to read it…..and share. I already have several people in mind.

    Like

    1. Nancy P says:

      Thank you Sue. Your encouragement to write helped me geet to this point.

      Like

  2. Mary Frey says:

    Hi Nancy, Congratulations on this accomplishment! I know you have put a lot of time and emotion and love into this work. I look forward to reading your story.

    Like

    1. Nancy P says:

      Thank you Mary, your encouragement means a lot to me.

      Like

  3. Marla Hartson says:

    Nancy, thank you for starting this blog. Your advice, love and help has already been such a blessing to me and Mom. I also look forward to reading your story.

    Like

    1. Nancy P says:

      It’s tough to write, even though it’s been nearly 7 years since Dad died. As I’m writing I think of your family.

      Like

  4. Debbie Johnson says:

    What I’ve read so far is brave, bold, and beautiful. I’m anxious to follow along with hope for nurses at the bedside.

    Loved the picture of you and your Dad!

    Like

    1. ruthseed says:

      Thanks Deb. I hope it can be utilized by many.

      Like

      1. ruthseed says:

        Deb, that was me, Nancy, using a test email!

        Like

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