The Voices, the Words and the Sadness of Alzheimer's
- Published on Friday, 31 December 2010 17:13
- Written by Stanton O. Berg
- Echos from the Shadows -
This is a collection of 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 they capture a picture of the fear, the hopelessness, the despair, the sorrow, the confusion, the mental isolation, the loneliness and the darkness of the world's most terrible terminal disease.
They are the “Holy Watchers” as so eloquently defined by Pat Samples in her “Reflections for Caregivers.”The last item below in this collection of four (4) writings is a poem dedicated to my wife, June K. Berg and titled: "The Alzheimer's Memories of the Heart."
by Pat Samples
“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 aren’t 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.”
( Copywrite 2001 - Used with permission of ACTA Publications )
(Georgia Brady, Elder, First Presbyterian Church, Waco, TX – 28 October 2007)
(Stan's Editorial Note: Lamentation 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 from Burger King, 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”
(Hymn – words- by Mary Louise Bringle, Copywrite 2002 by GIA Publications Inc. www.giamusic.com Used by permission.)
“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.
Editorial note: 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
(Dedicated to June Berg)
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.
Did we walk together yesterday?
There’s something wrong -
with my memory.
But I do know you.
I know I know you.
I know I love you.
I know how you made me feel.
I remember the 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 -
that you were here.
But my heart still remembers.
Remembers the feeling of warmth
and love returned.
Remembers that I am less lonely -
and happier today -
because you have come.
Please, please don’t forget me.
Please don’t stay away just
because of how my mind works.
I can still feel you.
I can still remember you with my heart.
A Memory of the heart is really -
the most important memory of all.
(Original Author Unknown – named, revised and edited by Stan Berg 5/6/2008.)
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:
Note: June Berg passed away on 23 October 2008 after almost 11 weary years of battling Alzheimer's. June's funeral notice as printed in the Minneapolis Star Tribune following her death in October 2008 can be found on the top blue navigation strip under the label "In Memoriam" and on the drop down menu as item:
For the story of June’s favorite home at 6025 Gardena Lane and the poem I wrote about this home during a day of deep sadness, click on the below link: (This was June’s home for almost 40 years. It was constructed shortly after the previous home was severely damaged in a tornado. 6025 Gardena Lane was the first home the June participated in the selection and purchase of a lot on a small hill, helped with the design of the home and watched it being constructed. 6025 Gardena Lane had a special place in June's heart.)