The Voices, the Words and the Sadness of Alzheimer's
- Published on Friday, 31 December 2010 17:13
- Written by Stanton O. Berg
The Voices, The Words and the Sadness
This is a collection of four (4) personal reflections, writings and the Hymns from hurting loved ones – the caregivers who are looking on as a Wife, Husband, Mother, Father, or Grandparent slowly disappear into the shadows of Alzheimer’s.
Together this collection captures a picture of the fear, the hopelessness, the despair, the sorrow, the confusion, and mental isolation of this terrible disease.
They are word pictures of the loneliness and the darkness of the world's most terrible terminal disease....perhaps no where is it better described then in "Lamentation".
Pat Samples in her poem the “Holy Watchers” eloquently defines the "Caregiver"
Even a Hymn can be used to tell the story as it is so eloquently done in "When Memory Fades".
The last item below in this collection of four (4) writings is my poem dedicated to my wife, June K. Berg and titled: "The Alzheimer's Memories of the Heart."
by Pat Samples - 2001 (c)
“Much of our loved one’s suffering is invisible, at least to the outside world.
Sometimes we’re the only one who knows the pain is there, where it comes from and how severe it is.
We try to explain it to others, but they are not around to witness it, day in and day out, the way we are.
We stand alone along side our loved ones as the vessel holding in all the fear and sorrow and hurt.
We are the “holy watchers,” the keeper of the flame of love. Some day, just being there as caring witnesses is the most important gift we give.
Be with me dear God, as I say to my dear one, “Here I am.”
Used with permission of ACTA Publications.
(Georgia Brady, Elder, First Presbyterian Church, Waco, TX – 28 October 2007)
(Stan's Note: "Lamentation" below is beautiful story of a Wife's loving care of her husband in a climate of Alzheimer's. Lamentation is also a poignant love story of a wife and husband's fight for survival and the sorrows of loss as the husband slowly disappears into the shadows of Alzheimer's.)
"No, no, no…Please dear GOD. No! The widow cries herself to sleep, tears soak her pillow. Her beloved is gone, no more alongside her to sit and hold her hand. She is alone.
Sorrow and exhaustion have drained all beauty from her face. Nights of bitterness and days of lost hope have sapped her strength. Look, O GOD, and see what has become of me!
And you, all of you have witnessed our suffering, look and see if there is any sorrow like my sorrow, what GOD did to me? She is utterly forsaken.
The widow remembers the beginning of her sorrow, the days when she could no longer pretend that her husband was well, when the doctors shook their heads with bad news. Her heart is gripped by fear and dread. GOD, help us!
She secretly prepares herself for the worst but hides her fears from her husband. She protects him from the truth, protects the children, protects his mother and his brothers and those who love him.
She bears the truth within herself, lives the nightmare from which she cannot awaken. GOD, help us.
In the early long days and nights of his illness, she cares for her husband. She is intent on keeping his life.
She finds support groups. There are people who understand. When people meet, they earnestly seek to learn from each other ways of coping, and they are alert to every promising new treatment. They pray for each other. O GOD, help us!
She begins to believe that if she tries hard enough she can make him well and bring him back to her and to the life they had together. There must be some medication;, some doctor, some miracle, some prayer…GOD, will you not help us?
The families come. They try to understand, but they can’t ---or won’t believe. Later, they linger, sharing their sadness with each other and with her, trying to imprint upon their mind’s eyes and ears his face and body and voice. They sympathize, and they help in ways that they can. GOD, where is your help?
Friends, neighbors visit, keep them company for long hours. They sympathize, help in ways that they can. Their hands hold her hand and they speak gently to her. Their hands hold his hands and they speak gently to him. They bring treats from home and chocolate milk shakes ... they gently spoon fine –crushed ice into his mouth.
Relentless, the disease progresses. He looks at her with love, with eyes that trust her with his life. His looks break her heart. O GOD, why? What have we done to deserve this? Whatever it was, please forgive us! Please, please help us GOD!
Doctors treat her husband. They do what they can to ease his suffering, prolong his life. With downcast eyes, they explain that nothing more can be done.
Nurses and aids attend his needs with quiet respect and gentle touch. Hospice aids tuck sheets, adjust his position, change soiled clothing, bathe his body. They take comfort from their care. But GOD, where are you?
One day, she picks up a book and reads words written long ago by Saint Teresa: Christ has no body now on earth but yours, no hands but yours, no feet but yours. Yours are the feet with which He has to go about doing good. Yours are the hands with which He is to bless man now.
Her eyes open; her face wets with sudden tears. She realized that GOD has not abandoned them; GOD was not silent to their pleas! At this time or that, God had taken the form of a loyal friend, a grieving member of the family.
Her mind races with memories of those who have come! A devoted friend, a loving family member! A disappointed doctor, a compassionate nurse or nurses aide, a gentle social worker, a supportive Chaplain, a caring Minister! Even a stranger; pausing at the door of their room in the nursing home with a friendly smile and wave!
GOD has come to them disguised in flesh and blood, GOD-with-skin-on! Thank you GOD! You have been coming to us all along! Thank you, thank you, heavenly Father, heavenly Mother! Thank you for your loving care!
The husband is weaker, as weak as a child, when like an infant who cannot lift its head. Once he gave eloquent speeches in courtrooms and high places. Once he spoke tenderly to her and to others he loves. Once he laughed and shared stories of his childhood and youth. But his voice falters, his sentences fall apart. Now he is silent.
His face and body are shrunken, unfamiliar. He can neither swallow a sip of water nor move a finger or a toe. His body clings to life, but his eyes are closed and no longer look into hers. O GOD, let him die! Let him be delivered from this body of suffering!
Death comes early one morning. She moves to the bed and climbing up lies upon his body. She rocks him back and forth in her arms, her tears wet their faces. No, no, no…please, dear GOD. No!"
“When Memory Fades”
Mary Louise Bringle
“This hymn was written for a friend whose mother was suffering from Alzheimer’s disease and whose father, the primary caregiver, was growing increasingly frail. The text affirms that although our human memories fade and our human arms weaken, the memory and the arms of God uphold us everlastingly.” – Mary Louise Bringle
“When Memory Fades and Recognition falters.
When eyes we love grow dim and minds confused.
Speak to our souls of love that never alters;
Speak to our hearts, by pain and fear abused.
O God of life and healing peace, empower us
with patient courage, by your grace infused.
As frailness grows, and youthful strengths diminish,
in weary arms which worked their earnest fill,
your aging servants labor now to finish
their earthly tasks, as fits your mercy’s will.
We grieve their waning, yet rejoice, believing,
your arms, unwearied, shall uphold us still.
Within your Spirit, goodness lives unfading.
The past and future mingle into one.
All joys remain, un-shadowed light pervading.
No valued deed will ever be undone.
Your mind enfolds all finite acts and offerings.
Held in your heart, our deathless life is won.
Mary Louise (Mel) Bringle is Professor of Philosophy and Religious Studies and chair of the Humanities Division at Brevard College (Brevard, NC). A teacher at heart and a theologian by training (with a Ph.D. from Emory University and an assortment of publications in pastoral theology), she began writing hymn texts in 1999. Since that time, she has won a number of international hymn writing competitions and been featured as an "emerging text writer" by The Hymn Society in the US and Canada.
(Hymn – words- by Mary Louise Bringle, Copywrite 2002 by GIA Publications Inc. www.giamusic.com Used by permission.)
The above text and the music can be found in the "Evangelical Lutheran Worship Book". Sung to the tune of Sibelius’s Finlandia.
The Alzheimer’s Memories of the Heart
I remember you with my heart.
My mind can't say your name.
I can’t recall where I knew you,
or who you are, or who I am.
Maybe I grew up with you.
Maybe we were family together.
Were we together yesterday?
There’s something wrong...
something wrong with my memory.
But I do know you...I know I know you.
I know in my heart I love you,,.
I know how you made me feel.
The special feelings we had together.
My heart remembers.
It cries out in loneliness for you.
For the feelings you give me now.
Today, I’m happy that you have come.
When you leave my mind will not remember...
will not remember that you were here.
But my heart still remembers.
Remembers the feeling of warmth
the feeling of love returned.
Remembers that I am less lonely...
Remembers I am happier today...
happier because you have come.
Please, please don’t forget me.
Please don’t stay away...
just because of how my mind works.
I still feel you with my heart...
my memories of the heart are now...
...the only memories in my world.
Stan Berg - June 5th, 2008 - ©
(4 months later June died in October 2008)
At the time the below picture was taken, June was in the late stages of this terrible disease and in the final year of her life. She rarely ever opened her eyes. Holding June's hand and just being with her, was the only means of communication that remained open or available to us. It was, as in the above poem, memories of the heart, replacing the crippled mind!
(Jim Gehrz photo of June and Stan 10/31/2007)
For a similar and a very profoundly moving poem, see John L. Stevens:
Jane Jackman - Ringwood, United Kingdom - (22 June 2016): "Lovely words Stan. So meaningful. Thank you for sharing."
Michael Shaw - Olney, Illinois - (22 June 2016): "Beautiful thoughts Stanton ..Thank you."
Susan Rue-Ray - San Jose, California - (22 June 2016): "Wow that was so beautiful."
Marie Crilly - Dublin, Ireland - (22 June 2016): "Beautiful , Thank you Stanton."
James Denton - Pana, Illinois - (22 June 2016): "Beautiful post ! Thanks for sharing."
Jackie Irving - Liverpool, United Kingdom - (23 June 2016): " Wow Stan...what beautiful words....that's the only way to describe it is one of my favorite things...is to read poetry and the written word....thank you for sharing this lovely page...take care and God bless."
After an almost 12 year journey into the shadows of Alzheimer's, early one morning in late October 2008, an exhausted June felt God's gentle touch on her shoulder and heard the words: "Come Home June!" As June lay like a wounded soldier on a battlefield, it was God's Angels that ushered June into a Heavenly Kingdom to the sound of a chorus of Angels...and into June's new home, a "Mansion on the Hilltop", where there is no pain, nor illness nor tears...June's funeral notice as published in the Minneapolis Star in October 2008 can be seen on this website in the drop down menu under the "In Memoriam" label - just Click on: