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"A Plea for Understanding!"

June Berg November 2005 

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Introductory Note: This beautiful and touching poem is dedicated to June K. Berg, who died from Alzheimer’s, October 23, 2008. Photo above was taken at The Wellstead an Alzheimer’s facility, in early November 2005. (June's 78th birthday.) June’s signature smile and kind eyes have taken on a faded look with the natural glow of her face forever gone. A very sad year for June, Stan and family. June was in her 9th year of Alzheimer’s and  the 1st year in a facility. It is hard for me to look at this photo without tears and wondering what could I or should I have done differently!

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"A Plea for Understanding"

(Revised by Stan for June)

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"When I wander,

don't tell me to come and sit down, wander with me.

It may be that I am hungry, thirsty, need the toilet,

or, maybe I  am just looking for my home of past years.

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When I call for my mother, even though I'm old,

don't tell me she has died.

 Reassure me, cuddle me, ask me about her.

Maybe I am looking for the security that my mother once gave me.

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When I shout out -

please don't ask me to be quiet or just walk by.

I am trying to tell you something,

But I have difficulty in telling you what.

Be patient, try to find out.

I may be in pain.

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When I become agitated or appear angry –

Please don’t reach for the drugs first.

I am trying to tell you something.

It may be too hot, too bright, or too noisy.

Maybe it’s because I am missing my loved ones - try to find out, first.

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When I don’t eat my dinner or drink my tea,

 It may be because I’ve forgotten how to.

Show me what to do and remind me.

 It may be that I just need to hold my knife and fork.

 I may then know what to do.

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When I push you away when you are trying to help me -

washing up perhaps, or just getting dressed.

Maybe it’s because I have forgotten what you have said.

 Keep telling me what you are doing -

 over and over again.

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With all my thoughts and maybes',

Perhaps it will be you, who reaches my thoughts,

understands my fears and will make me feel safe…..

 Maybe it will be you, that I need to thank!

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If only I knew how!!"

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Editorial Comments: (Original Author Unknown – extensively edited and-revised by Stan Berg - 10 June 2012): This poem was first brought to my attention by my friend in the UK, Norm Mac. While the original author of this poignant poem is unknown, we can be certain it was not penned by a victim of this terrible disease. Portions of the poem indicate a setting of the later stages of the disease, a time when a victim would be unable to compose a poem with such clarity and such descriptions peculiar to that of the late stages. Either the author was a caregiver with a good understanding of the disease that is far beyond the knowledge of most or a knowledgeable medical person who has studied the disease. I have rarely seen such an explanation for “shouting out…agitation and anger” that is also coupled with admonitions against the use of drugs…Here the victim of the disease is trying to communicate with the caregiver in the only way they know how…Such explanations have been given by doctors in articles and editorials against the use of antipsychotic drugs.

While I liked much of the original poem, some was not appropriate nor the word arrangements…I edited and-revised it to what I thought was a good fit all around. I have made a number of revisions and changes in this poem from the original such as a change of the name from the previous name of “Maybe”, (Another version is named "When I Wander") to "A Plea for Understanding", dedicated it to June K. Berg, changed the formatting, the punctuation and made some 18 word changes. (additions and or deletions) I also removed 3 lines that I considered inappropriate, and added 1 line...Stan Berg.

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Mayo Clinic recently (26 July 2012) discussed  the importance of seeing "challenging behaviors as symptoms instead of problems." They also talked of "negative behaviors" as being demonstrations of "Unmet Needs". Mayo recommends that "to better manage "behavior symptoms" in a person with dementia, we need to uncover and address the real source of the problem." Mayo suggests that the caregiver take on the role of a detective to uncover the real source of the behavioral problems..."the result will be fewer unmet needs and consequently fewer behaviors that challenge and wear down caregivers."

Mayo suggests that the "unmet needs" causing behavioral problems may fall into three general categories: 1. Physical Health,  2. Physical Environment  and 3. Social Environment...

Mayo discusses problems of physical health that may be triggering the challenging behavior. Examples given were: fatigue due to poor sleep, presence of infections such as UTI, Clinical depression, Vision loss (missing eyeglasses), hearing loss (hearing aid malfunction), constipation, dehydration, need to urinate and hunger. Mayo points out that if a person with Alzheimer's or some form of dementia "is fatigued, hungry or in pain  and is unable to articulate or take care of the need independently, that they would express anger, agitation or even aggression."...Note: Interactions between drugs is anothr large area that should have been included here!

Mayo also links such behavioral symptoms to the victim's physical environment. They stress that physical environment can be a powerful factor in triggering behavioral symptoms. Stress may result from factors and changes of or in "physical space, daily routine and sensory stimulation." (Noise levels and such things as sight, sound, taste and smell.)

As far as the impact of the unmet social needs - Mayo (9 August 2012) points out that Alzheimer's and other dementia's are frequently associated with many losses of personality and personal characteristics such as "Identity, Independence, control, connectedness, meaning and purpose."...all are characteristics that define who we are. Mayo says it is this social environment, including  our past relationships with others, that determine how deeply such losses will impact the Alzheimer's and dementia patients quality of life. Because of such unmet social needs, the Alzheimer's and dementia patient's plea or cry for help or understanding is reflected in "depression, paranoia, agitation, irritability or ...aggression."

For a detailed discussion of the impact of negative noise, see the essay in the "Care Practices" menu on June's website or click the below Link:

 Negative Noise and Alzheimer's

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Alzheimer's started taking control of June's life in the (7th) seventh year (2003) of her journey into Alzheimer's. Thereafter, I slowly lost June, tear drop by tear drop. The photo below of June and my hands was taken near the end of the 11th year of June's journey into the darkness of Alzheimer's. June was no longer responsive to speech or touch and gave no indication of knowing me. Holding June's hand was my only means of communicating with her and my way of telling June I loved her. June would hold her little Christian cross, hand-made of walnut, in her right hand, giving it up only when put to bed for the day. After a struggle with Alzheimer's of almost 12 years, an exhausted June was taken home to heaven on 23 October 2008. It is my hope that I can join her when my life on earth ends!

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(Photo below of June and Stan's hands by Jim Gehrz - 31 October 2007)

stan and june's hands

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Reader's Comments

Lora Rushing Robinson - Benton, Louisiana - (11 June 2012): "From my friend..Mr. Stanton O. Berg.....i never fail to read his every post...he knows..and he understands..if you ever find yourself needing to understand Alzheimers...and the love that can carry on through eternity, then you must read about him and the love of his life..Ms..June,a love that most of us in this day and age...can only dream about..."

Robin Caretti - East Windsor, New Jersey - (12 June 2012): "I really touch a big moment through your writing. My Mom and Dad had Alzheimers. Also its a horrible disease - your words were expressed so deeply to my heart."

Robin Stewart Stone - Charlotte, North Carolina - (13 June 2012): "This poem was so touching, but really sad and I see my Mama going there. I see that same look that's in June's eyes in Mama's. I hate that we're so helpless in this, with nothing to do but watch her slip farther away. I'm sure you felt guilty, but I know how you love her and took care of her til you had absolutely no other choice. Surely you know that too, even though it didn't make you feel any better. I'm really scared about if/when that time comes for us to make a decision about Mama."

Sherril Cote - Brookfield, Massachusetts - (21 July 2012): "This is a wonderful poem...I am going to print this out to show some family. thank you for revising and sharing it!...Sherril, daughter of Joyce - Alzheimer's sufferer...I'm printing this to hand out to some who need to know... "

Carol Crawley - (22 July 2012): "Absolutely fabulous... I am going to give a copy to the home where my Darling Auntie is."

Christine Walend - Lorain, Ohio - (22 July 2012): "love this--going to copy it for the nursing home where Mom is...I always cry when I read Stanton's posts--but they are beautiful."

Marni Ingram EnstadAanerud - Bakersfield, California -(22 July 2012): "Thank You for this. I Just love it!"

Debbi Ring-Westbury  - Bay Point, California - (22 July 2012): "Thank you for sharing this. It will help me to better care for my mom. She is in early stages of dementia or Alzheimer. Not sure, just need her diagnosed. This is a very hard and sad time for us. I feel overwhelmed but can only imagine what she feels. So thank you."

Denise Roberts  - Southend-On-Sea, UK - (23 July 2012):"Lovely Stanton...brought a few tears to me......"

Mary Darker  - Ballymore Eustace, Ireland- (25 July 2012): "Thank you Stanton for sharing this poem with us."

Teresa Mayo  - Maryville, Tennessee - (27 July 2012): "Thank you for this poem. It spoke volumes to me in trying to understand what my mom is feeling."

Melissa Parson - Seattle, Washington - (27 July 2012): "A respectful view of the alzheimer's victim's situation, important info, thank you for sharing."

Pam O'Halloran  - Sedona, Arizona - (9 August 2012):  "There is rarely something you post that I have not viewed before, yet I view them all again as they are always so moving, and a reminder to everyone that there is an urgent need for a cure. This time, before I scrolled down very far, I saw June's photo. I knew immediately this was not the June we have seen so often before. It seemed to me that her always brilliant sparkle was missing somehow, and I as read further I found that it had indeed faded at this point. I was a bit surprised that I was able see this seemingly minor change in her expression - not knowing how right I was. The poem is just wonderful - no matter how many times I read it. Thank you  for all you do for your June and the countless other sufferers of this horrible disease. Keep fighting, my friend. Thanks to you, many of us have grown to know June with her sparkling eyes and warm smile"
 
Cicily Richardson  - (10 August 2012): "I am a nurse at an Alzheimer's community, this poem was very touching and the principles I carry with me, when caring for my patients :-) thank you for sharing. Beautiful."
 
Neale Lundgren  - Atlanta. Georgia - (10 August 2012): "A powerful and beautiful poem... It could actually be used for every one, every couple, every parent of children. The two rules: #1don't interpret what you think someone is saying, and #2 be present. Thank you."
 
Amy Thompson  - Pearl, Mississippi - (10 August 2012): "Thanks for this poem. It's hard to watch our loved ones fade away. I get so angry at times, I want to shout from the roof tops."Fight Momma fight, stay with me!" I know she is trying her best, but this ugly illness is taking every part of her away from me. I see her sorrow, her confusion and her fear everytime I look into her eyes...and I long for one more day with Mom. Thanks for sharing this link."
 
Therapeutic Recreation  - Westbrook, Connecticut - (27 November 2012): "Thank you.  I am going to share on my page."

Dianne Cogar  - Springfield, Ohio - (27 November 2012): "This poem is not only sensitively descriptive of a persons way of thinking who has Alzheimer, but it is also an invaluable tool for those who care for the victims of this dark and lonely disease. And though the plea here is for "understanding,"something I believe we all need to practice  in our everyday  healthy lives anyway, you just never know if, or when, the day may come that "patience" will play an even bigger role in order to co-exist in a healthy loving relationship. " Understanding and Patience" are the strongest platforms on which true sweethearts never part... for they are the golden keys to loves survival...and they are the  only keys that allow us a secure, reliable,  and safe entry into another warm and caring heart."
 
Vicki Cadogan  - Limerick, Ireland - (27 November 2012): "Pulls at the heart strings."
 
Dawn Laursen Galati  - Orlando, Florida - (27 November 2012): "OH WOW, gonna have to print this one."
 
Keith Fredrickson  - (4 February 2013): '"Very nice Stan !!!"
 
Anne Rowe  - (30 March 2014): "Thanks for posting. It's something to read over and over!"
 

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June's Passing

June 1994

June's funeral notice as published in the Minneapolis Star in October 2008 can be seen on this website under the "In Memoriam" label - Click on:

  

"June K. (Rolstad) Berg - In Memoriam"