This is September 1; first day of World Dementia Awareness Month in 2015.  My husband took this photo three months before Grammy died with dementia.  She rallied terrifically during those last hours of our last Thanksgiving visit, and was waving good-bye as we walked thru the snow and out the gate to leave.  Reaching out to us … altho she did not remember who were.  She remembered that we were important to her.

Lately have seen the “Alzheimers Poem” posted frequently, and think it largely helpful (posted at http://www.virgin.com/richard-branson/remember-me  and written by “Barbara”, who had dementia and was partner to Richard Branson’s “Uncle Charlie”) … but I do have a caveat to add, in regards to my experiences with Grammy and dementia.

ALZHEIMER’S POEM

Do not ask me to remember,

or try to make me understand,

Let me rest and know you’re with me,

Kiss my cheek and hold my hand,

I’m confused beyond your concept,

I am sad and sick and lost,

All I know is that I need you to be with me at all cost,

Do not lose your patience with me,

Do not scold or shun my cry,

I can’t help the way I’m living,

Can’t be different though I try,

Just remember that I need you,

That the best of me is gone,

Please don’t fail to stand beside me,

Love me till my life is done.

*     *     *     *     *

Appreciate many parts of the appeal above … but I am saddened that Barbara felt “the best of me is gone”.

Altho my grandmother probably felt the “best” of her SELF was gone, I do not feel that the “best” of my grandmother was gone in her later stages.  Far from it!

The ability to think thru her responses to life – to make choices that reflected memory and consideration for the unique circumstances of the history and context of her listeners, was gone.  She knew these people were important to her – she knew we loved her and she knew that she loved us, but could not remember who we were individually.  Her context for those around her was gone.

Her context for who she was and what she wanted … was gone.

The ability to delay gratification was gone.

Those things are almost always gone in later stages of dementia.

But her visceral response to life was NOT gone.

That last Thanksgiving, Grammy was sure that “Bindy” (my childhood nickname) was a little toddler out in the snow. She was determined that we needed to bring “Bindy” indoors next to the stove to get warm. LOL She did not recognize me, yet was definitely thinking of me and loving me in her usual helpful manner that was at her core – the essence that made Grammy who she was. (( big smile ))

She may not have remembered who I was, but she was very upset that I rejected her gift of back rub (which often creates pain with my fibromyalgia symptoms).  She wanted to hold hands — almost all the time.  She knew we were important to her and she wanted to be touching us.  She was constantly trying to give and do for folks, even if the context was often “inappropriate”– because the context was missing for her.  Her enthusiasm for life was a gift to all of us, until the last day of that life.

Having my grandmother as a Dementia Mentor (even if only in my memory), has been a tremendous source of hope and example.  In my final days I hope the same can be said of me.

Related entries:

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https://truthfulkindness.com/2015/06/23/impact-example-respond/

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https://truthfulkindness.com/2015/06/07/self-identity-am-i-still-me/

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https://truthfulkindness.com/2015/02/24/dementia-change-priority-pathways/

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https://truthfulkindness.com/2015/02/02/harrys-lantern-dementia-trail/

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https://truthfulkindness.com/2014/12/07/pwd-leadership-2014-in-my-own-life/

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https://truthfulkindness.com/2014/11/07/hold-hand-anchor-me/

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