Listeners' Reflections
This is your place to publicly comment on the topics and issues addressed in Speaking of Faith programs. React in a personal way, and put into words what this program meant to you.
Submit Your Reflection about "Alzheimer's, Memory, and Being."
Our Town
(April 2, 2009)
Richard SullivanI so much enjoyed your program on Alzheimer's disease. I am a retired teacher and have recently become a massage therapist. I volunteer twice a week at a large Alzheimer residence to offer my skills. I massage their backs, arms, and necks. It is the most rewarding work I can imagine. My 20 or so people are in advanced stages of the disease yet they are loving and appreciative. I love them. In listening to your show so many of the phrases that were shared reminded me of lines taken from the Thornton Wilder play, Our Town. "What's left when memory is gone?" the Stage Manager says in the cemetery. And "…it all passes so quickly. Do we really appreciate life for what it is? every moment?" say Emily the youthful female lead. Anyway, I appreciate you and your program.
Tulsa, Oklahoma (Listens to SOF OnDemand)
No Regrets
(March 29, 2009)
Brian ColemanI am moments away from becoming a 50-year-old man with two aging parents who still have most of their long term memory. Although short term, not so much. This morning on the way to the dog park I was completely overwhelmed and moved listening to the two daughters interview their father. The interview was beautiful in its sadness and horrified me in its possible prediction of my relationship with my parents. I had to sit for a long while waiting to clear the tears before I could get out of my car. I talk to my parents everyday so that I will have no regrets, if that should become their future.
Boca Raton, Florida (WLRN, 91.3 FM)
Good News & Bad News
(March 29, 2009)
Stephen MaltzKrista and her psychologist guest made a remarkable point: an Alzheimer's disease patient's awareness quotient is likely much, much greater than commonly assumed from their general and growing inability for interaction with non-sufferers. Before my own father's Alzheimer's disease, I too would have viewed as miraculous the golden light cast by their insightful display and still impressive potential for producing good work. It's really important to tell the world that these patients indeed have somebody inside and that some solid awareness is going on inside! It was truly insightful for you to assemble a program that exposes their increasingly ignored awareness or even worse, that insightful brain-function was an unimagined capability. Your substantiated display of competent thinking proved differently. The caliber of thought behind the writing group's statements and reflections seemed to become a jewel of amazement to you. But it would've been difficult not to be inspired (amazing even themselves) by the heartwarming revelations they brought forth! I would never have realized it until, under even more strenuously oppressive court conditions, I saw the same insight displayed by my long ailing father.
I had to smile as I heard it expressed in Krista's voice. Genuinely stunned wonderment at the brilliant "thought-trinkets" they had cobbled together. She was flabbergasted they were brainstorming incontrovertibly deep, (romantic-whoa!) thoughts via written expression and "still able" to participate at this level! I believe many would be shocked that despite seeming diminishment of their thinking processes (and with their omnipresent Alzheimer's dervish whirling and flailing and unravelling all that had cemented them together and made them who it was that they once were) we're all astonished at their "distillates" proving still — their life, their love, their having dwelt here before us and most importantly, continue to do so now! And so it was with my father as well. I believe this best, last stage must be common to the diseases' syndrome. It brings forth an uninhibited, almost child-like brilliance. Unanticipated, unexpected amazement from everyone, including the patient! Remarkably, it goes beyond the aesthetic.
My father's estate, my mom and the court all needed him to sign a real estate transfer contract on our house. Mentally, my dad no longer recognized me, and though he hadn't even finished high school he insisted on reading this 5-page contract. He said, "No! This is all wrong." and literally shoved it back at me and he'd found a huge error! The family, lawyers and judge had missed. Dad absolutely knew he was right. A $ Million in education between all of us but we learned something big that day. Since then, I've never assumed anything about anybody or any situation.
Although it's nearly impossible to find much bad in anything I've heard you present, here is my sole exception. Your program close emphasized that even though these folks had now faded and passed away, their hard-fought-for "nuggets-'o-golden-thought" remain poignant and their powerful inspiration will float today on new airwaves to new listeners. On it's surface all of that is true. But it's not the whole truth. It's not the rest of the truth about what's going to happen to every member in that family. Soon. We had no idea anything worse could have ever happened.
Families who are nhew to tis illness are naïve in their regard of what subsequent stages of Alzheimer's disease soon present. It's stupefying. It takes your father away from you right in front of your eyes. The innocent, golden stage only lasts an eye blink. It's a long, treacherous downhill run, hurtling into the darkness of a bottomless plunge. Its manifest progression requires brave diligence and strength. As my dad's "yesterday" memories melted into his "todays" recent-event-memory his mindset reverted into the worst place it could have gone — his WWII role as a Jewish GI. Rife with terror. Fearful prospect of Nazi bounty on all Jews serving among the diverse ethnic "American GI soldiers" ranks. Even upon his further psychological descent, dimmed awareness, fading recognition, then finally bedridden and silent, he still struggled and jerked in seeming combat awareness.
Your program's conclusion should have stressed that options and management efforts will change focus over the span of treatment and care. Just as the creative writing program helped maximize an entire family's ability to understand the nuance of this disease — this writing group's graceful accomplishment was only one stage. Families new to the ravages of Alzheimer's disease must also be told and shown how to seek help learning to manage other stages that are certain to follow at a varying and unpredictable pace. You should have stressed that options for maximizing growth and nurturing protective postures migrates eventually from that of the patient to focus support upon the attendant nuclear family. In one way or another, everyone suffers from the ravages of Alzheimer's disease. There is reward and beauty to be discovered while participating in the medical care program for a terminally ill loved one. However, getting the necessary planning and guidance from one who is experienced in understanding and preparing for the full rigors of required care will enable the caregiver to better emerge and transition after serving a sufferer in their end-of-life role
Chesterfield, Missouri (KWMU, 90.7 FM)
Hardening of the Arteries
(March 29, 2009)
Roberta YoungI was raised by my grandmother and grandfather as my mother and father died shortly after my birth (my mom in my childbirth and my dad in korea). My maternal grandparents raised me as my mom was their only child. I was about 8 years old when my grandmother began to forget things. My grandfather could not understand and would become angry that she had forgotten. In those days (the 60's), it was call hardening of the arteries.
Nevertheless, my grandfather and I survived but it was sad. My cousin could not come see my grandmother and I could not understand this until just a few years ago. My grandmother was, for the most part, a happy person but she would sit and recite the books of the bible day after day. This was brought out in today's program, that patients often recite items they know.
Cooper City, Florida (WLRN, 91.3 FM)
Trauma, Injustice, and Alzheimer's
(March 29, 2009)
Ellen BernardThis week a day before I heard the title of your program on discussing Alzheimer's, I heard an interview with another a psychiatrist from the University of Boston. He specializes treating people who have endured terrible traumas in his life.
I know your program discussed the endurance of certain aspects of our own humanity and faith despite the ravages of this disease. It was touching and until this past week I would have derived some measure of comfort from it all. But when this doctor talked about Holocaust survivors he has treated who later in life developed Alzheimer's, I was deeply troubled. These patients who had endured such inhumanity and had struggled afterwards for years putting this into some perspective and building their lives. These same innocent souls were in their dying years transported to those years in the camps. These people were retraumatized again, but this time without the mental capacity to escape.
I found this interview so very sad and hard to understand. I mean I do understand that as love is enduring and faith, great evil can also leave an indelible mark on our memories. But what does that say about God's love? I have failed to reconcile any purpose any act of love associated with such unjust pain. And it is not just the pain of the person with the disease, but the pain of seeing this in people around this person, helpless to do very much to alleviate this mental distortion.
I wanted to share these thoughts that raised more questions about the injustice of some people who have escaped evil only to return to it again, from no fault of their own.
Ann Arbor, Michigan (WUOM, 91.7 FM)
Music
(March 29, 2009)
David BalderstonDuring the ten years that I led a support group for family caregivers, mostly adult daughters, I kept hearing that one ray of hope remained after all other means of communication had faded away — music. Just as writing taps a different verbal part of the brain than speech, music can access a largely nonverbal part that is emotional yet still meaningful. Memories of familiar tunes and rhythms can be activated, and that pleasure can be shared, briefly but palpably, with a caregiver. Then both can benefit, at a time when the late middle/early end stage disappearance of the personhood of the Alzheimer's patient is becoming final, even as the empty body lingers on.
New York, New York (WNYC, 93.9 FM)
Hit Home
(March 27, 2009)
Laurie SmithThe program broadcast today really hit home for me: My mother has Alzheimer's, and while it's too late for her to remember anything in writing — indeed to even write! — it inspires me to have others in her nursing home to write memories while they still can.
My sister, Natalie Tucker Miller, found that reading to elders awakened their senses. When combined with pictures, they became even more engaged. She founded Ageless-Sages to produce and publish "picture books for elders." The first book is Lavender Ladies, written by her 21-year-old daughter and illustrated by her daughters' friend. It's a lovely book. I think you might enjoy visiting the website.
Canton, New York (WSLU, 89.5 FM)
Words Fail Me
(March 27, 2009)
Elaine HartungI have just finished reading your excellent Journal entry about Alzheimer's stories and tears are streaming down my face. For many years I worked as a Social Worker among Alzheimer's patients and their families. Those years were the happiest years of my professional work because of the people I was privileged to meet. People who didn't know where the intricacies of their path would take them but knew that they didn't want their ultimate destination. It was during those encounters that people were the most honest, the most trusting, and the most caring. Words fail me now in describing all that it meant to me. (I wish that I had your talent as a wordsmith!) For a while I was able to walk the scarry path with my clients and their families — until the disease had completely taken their sacred memory away. Then all I could do was to visit the vacant, lost ones and try to help their loved ones cope with their grief. Your program will be a great help to many who are facing a dark journey — and may God bless them all.
Winston-Salem, North Carolina (WFDD, 88.5 FM)




