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Tuesday, June 25, 2013

God granted us memory so that we might have roses in December, The hidden gifts of Alzheimer's


 "God granted us memory so that we might have roses in December."
J. M. Barrie

I was privileged to have had the opportunity to attend a Caregiver Conference on Alzheimer's offered by the by Lehigh Valley Aging & Adult Services in Bethlehem, PA. What I gained from the conference was not only a much better understanding of the physiological aspects of the disease but wonderful resources to file away for information and comfort should the need arise.

"The mere mention of the word "Alzhiemer's" evokes feelings of fear, sadness, and pain. And no wonder. Alzheimer's is a long heartbreaking journey into dementia. My husband and I have taken this journey together. But I have learned that, while we do not have control over the disease, we do have a choice to experience joy in spite of illness."
Marilynn Garzione

"Released to the Angels" 
Released to the Angels is a collection of reflections, memories, lost dreams and renewed hope.
The commitment between Marilynn and her husband brings us a love story that will leave you with a renewed strength to face the journey alongside your own loved one.
Be it a parent, spouse, sibling, child, or dear friend, as this cruel disease continues to steal what is held so dear, you will discover the importance of perspective and acceptance. You will realize the fine line between helping and dependency, the fine line between anger and fear, and the fine line between a loss and a gift.


               
 To companion our fellow human beings means to witness and learn as opposed to playing the “scientific expert.”

Dr. Alan Wolfelt is a bereavement counselor. His work helps us realize that to walk alongside someone facing a losing battle with a disease that will eventually try to steal their very soul, we are not only caregivers, but companions. We are in this journey together as we experience grief and loss  before the natural grief of death takes place. We must let each other go bit by agonizing bit long before the physical body takes its final breath. We must cherish whatever light peeks around the cracked doors within the mind, light that diminishes as those doors slowly close. We must take the time to slow down the pace to get through one day at a time. Take the opportunity to really look into our loved one's eyes and appreciate the sparkle and shimmer of recognition and connection. 
 
  • Companioning is about honoring the spirit; it is not about focusing on intellect.
  • Companioning is about curiosity; it is not about expertise.
  • Companioning is about learning from others, it is not about teaching.
  • Companioning is about walking alongside; it is not about leading or being led.
  • Companioning is about being still; it is not about frantic movement forward.
  • Companioning is about discovering the gifts of sacred silence it is not about a filling every painful moment with talk.
  • Companioning is about discovering the gifts of sacred silence; it is not about filling every painful moment with talk.
  • Companioning is about listening with the heart. It is not about analyzing with the head.
  • Companioning is about bearing witness to the struggles of others; it is not about judging or directing those struggles.
  • Companioning is about being present to another person’s pain; it is not about taking away or relieving the pain.
  • Companioning is about respecting disorder and confusion; it is not about imposing order and logic.
  • Companioning is about going to the wilderness of the soul with another human being; it is not about thinking you are responsible for finding the way out. 

Naomi Feil has done extensive research in her work with later stage Alzheimer's patients. She developed what is called Validation Therapy.
In the past, it was thought that it was necessary to "clear up any confusion" by correcting the patient. It is now believed that to deny what a person believes to be true only adds to the confusion, anger and frustration with what is real and not real. It is much more respectful and easier on everyone for the caregiver to "go where they are" and just go with the flow. It doesn't do anyone any good to continually feel the need to correct dates and events, or to renew the pain of accepting the death of someone lost. To validate their reality is a much better way to bring peace to people who cannot escape the anxiety of confusion.

Maternal touch is where we begin our journey in life, and so very comforting for those who return to that period in their lives during the later years. The power of a hug is very important during all stages of life, but especially for those who feel so lost as they first lose their independence, and then the fear of losing their mind as well. We as caregivers often retreat within ourselves as a means of keeping it together,  or in our attempts to detach in order to handle everything. But we have to realize that as our loved one loses the ability to physically reach out to us, it is imperative that we initiate the embrace.
Grab a tissue and watch this amazing five minute clip of how touch and music can reach those we may think are lost to us.

She's still my Mother

She's still my mother, who's standing there,
It's still her face, her eyes. It's her hair.
It's still her body, but it's just the shell,
Of the mother I once knew so well.
She's still my mother, who looks at me,
Then asks the question," who might you be?"
Her memory's fleeting and her gait is weak.
Loved ones long gone are those that she seeks.
She's still my mother, whose angry words,
Like a sharpened sword, my soul can hurt.
She's still my mother, who shares our home.
This one we dress and whose hair we comb.
She's still my mother...I know it's true.
And so dear God, I turn to you.
Please give me patience, wisdom and love,
Till the day you take her to Heaven above.
Let me return, if even through tears,
The love she gave me through all these years.
Though she may think that I'm her brother,
I'll love her yet...she's still my mother.

© 1997, Jerry Ham



the dark night of the mind
Perhaps her path to becoming a saint
is this forgetting,
this stigmata –
not chosen, prayed for,
the fearful abstinence, alzheimer’s,
something holy.
She gives it up to God,
this her sweetest pride, her thinking,
until only one prayer is herself,
the rose in the center,
where before synapses turned
like a Chartres labyrinth.
And when the fierce catechism –
who am I? where and why?
oh why? -- has ceased,
and the last of the words go,
some will say
poor old woman with dementia,
while others will seek her
as the new hermit
of our days
with beautiful broken wisdom.

Maren Tirabassi