"A Day in the Life" - Late Stage Alzheimer's!
- Published on Monday, 03 September 2012 11:42
- Written by Stanton O. Berg
(June and Stan - Photo - Jim Gehrz 31 October 2007)
- November 8th, 2007 - a Day in the Life...
"June, today is your birthday. Your eleven year battle with Alzheimer’s has left you lying wounded, vanquished and exhausted. Like a snuffed out candle, only the slightest spark remains of what was once a warm, bright, vibrant and glowing lady.
Your mind only in the “now”, wanders through unfamiliar surroundings. Some people look friendly, some look familiar, and some do not. Some surroundings are void or dark. Some areas are so sad that you cry. All are confusing. The simple act of coughing or sneezing frightens you. You sit with your eyes closed drawing a curtain on a world that is always bewildering and sometimes frightening.
Well meaning friends and relatives try to jog a no longer existing memory with references that are also long gone.
When you awaken from a sleep or simply open your eyes it is into another strange and different world. There is an occasional flicker of familiarity but that is quickly lost. Your injured mind has abandoned you to a mental feeling of isolation, fear and solitude. *
Your signature smile that would always light up your face is forever gone...The sound of your voice has been stilled...Even the touch of your hand cupped over mine is just a memory.
You cannot walk, eat or bath without help. There are occasional uncontrolled tremors and seizures. Your life has been reduced to little more then a mere existence.
While you are like a stranger who no longer knows me, you remain and always will be, the love and light of my life.
I know that you are ready for God to take you home to a better world free of the shadows of Alzheimer’s. I still however cling selfishly to the remaining vestige of the lady who was and is the centerpiece of my life. I stand helpless as I see my life’s treasure being pulled from my grasp and slowly slipping away."
“Fear is a constant companion of the person with (Alzheimer's) dementia.” ...Mayo Clinic suggests the caregiver: “Say reassuring words every day and often, like a mantra" — "You are safe. Everything will be OK. It's good that you are here. I love you." Your words should be simply stated, short, and always the same.” (5/17/2011)
*A few days less then a year after the above tribute was written, on October 23rd, 2008, June passed away from Aspiration Pneumonia, a common complication that ends the suffering of many or most Alzheimer's victims.
(June and Stan on 31 October 2007 - Photo Jim Gehrz)
Stan's Notes: The above description of the late stages of Alzheimer's disease was originally a part of a longer tribute to June on her 80th birthday on November 8th 2007. ("June K. Berg - 80 Years of Age -2007 - 11th Year Alzheimer's" ) This tribute was published in the Minneapolis Star - Tribune, Thursday 8 November 2007 – All editions. At the same time it was published in this section of June's website under the same title...It was a year later on 8 November 2008, that it was added to the "Tributes" section of June's website under the title: "June K. Berg- 80th Birthday 2007." This page, "A Day in the Life - Late Stage Alzheimer's", is the most recent published version with a slightly altered title for clarity of the subject...When I first published this tribute to June, I thought it would have little interest to others because of the sad and gloomy nature of the description of the late stages of this terrible disease...on the contrary it has been one of the most popular pages on June's website.
At the time of writing this article, I was both angry and disgusted with a world that did not seem to understand or really care about the truth of this terrible disease. A world that seemed more interested and turned on by "Memory Cafe's", "Memory Gardens," Stigma theories and tasteless jokes about memory...a world not interested in the true dark and lonely face of this disease in the late stages...much to my continuing surprise, this tribute to June and the story of the late stages of Alzheimer's has been and remains one of the most popular of the over 310 essays, pages and articles on June's website. Over 41,000 people have now read it (2016) ...People really did want to know the truth about Alzheimer's...It was one year later after writing the first version of this story that June passed away..into another world, a world without pain or tears or the sorrow of Alzheimer's...
**Alzheimer's is one of a number of diseases and conditions that produce dementia type symptoms in the middle to later stages of the disease. Alzheimer's is said to account for 70-80 percent of all dementia symptoms. (Dementia is not a disease but rather a set of advanced symptoms common to a number of diseases of which Alzheimer's, Lewy Body Disease, and Vascular Dementia are the most common.)
Stan's Thoughts - From the Depths of Despair - June's Last Year
Alzheimer's is one of the worst if not the worst of the dementia type diseases...Mayo says the victim's life in late stages becomes one of constant fear...during the darkest periods of June's late stages, I would often day dream my private fantasy of taking June and running away with her to a land where there was no Alzheimer's...but I could never find the directions or the road map to get there...I knew it existed in Heaven, but no where here on earth except in my mind...I was looking for the impossible in this life...
Then in periods of dark despair, in those end times, I would think about putting June in the car with me and heading towards our old Wisconsin home areas in Barron,-Rice Lake and Colfax...then running the car off the roadside cliffs at Taylor Falls...then God would take over and my sanity would return and June and I would resume our journey through the dark shadows together...until that final day that God would take June home...and take away all her pain, fear and sorrow...
There are those who have never traveled that final end stage of the Alzheimer's road...those victims whose life is ended early by the complications of the disease and are thus spared the final cruel ending....there are those who would and will never understand such dark and despairing thoughts...this is a time when the victim of the disease becomes unresponsive...sitting or laying with their eyes closed...June's eyes no longer looked into mine...the quality of her life appeared totally missing...a time that June's signature smile was gone, her voice was stilled and the feel of her hand cupped over mine were just memories...
It was one sad winter day in the late afternoon of June's last year, that I became so overcome by despair and grief...watching June's decline... and a world that did not seem to care...that I thought of going out onto the nearby divided highway and stopping the traffic...asking the drivers and passengers if they had any idea what was taking place only a hundred yards away...in the nursing home and those residents who were slowly losing their lives and minds to the Alzheimer's disease...did they understand the physical and mental suffering these victims go through...did they really give a dam...but then I came to my senses and realized that nothing would be changed...I would make the news as that "crazy old man" out in the middle of the highway traffic stopping cars and ranting out of his mind...ending up in the local jail...embarrassing family or perhaps even getting killed in the traffic and the world would go on it's merry way...and June would be destined to finish her journey without me...
and then the end came quietly one Thursday morning, at 7 AM on the 23rd of October 2008...I was not with June when she passed....I had been told she would be alright for the night...I arrived just after June had passed...I had terrible guilt feelings...I had wanted to be with her...instead, my last hour with June was spent holding her hand and arm, touching her face...and eventually letting the men in black who were patiently waiting in the back ground...waiting to take June away...have their way...and then June was gone...I am sure that Heaven's gates opened wide to the sounds of a Heavenly chorus as June was welcomed home!...for me, life will never be the same until that someday that...
Note: I was at first reluctant to publish my above commentary about June and our darkest days of her travel into the shadows of this disease...Before publishing my commentary about the despair and misery of the late stage Alzheimer’s, I test posted it on my and June’s personal Facebook pages and on the closed group pages of 2 large Alzheimer’s and dementia caregiver groups…the first 24 hours of the posting resulted in a large and very favorable response…there were almost 200 expressions of agreement and almost 100 positive written comments…no negative comments were received…my basic commentary was shared numerous times on the pages of others…many of the comments could/can be seen as “Reader Comments”…geographically they represented the United States and the United Kingdom countrywide as well as Ireland and Australia…many readers apparently found a common ground in and with their own experiences…many expressed a feeling of comfort in that others had also experienced and found similar darkness and despair in the late stage times of their loved ones…comfort in that they were not alone…a review of the comments found that many of the responses used expressions or words of "Thank You" for publishing the story of my experiences...
Thoughts about the Awareness and Understanding of Alzheimer’s
The Glen Campbell’s movie that supposedly tells the story of Alzheimer’s and Still Alice is another that falls far short of the mark…they are said to provide awareness…we don’t need awareness, we need understanding…that is the problem with the 20 or more such Movies in the past 2 decades, or so including block busters like “On Golden Pond” and “The Notebook”… like the Campbell movie, they provide awareness but almost no understanding…when we leave the movie or film and look at the understanding we have gained from the movie “as to just what is Alzheimer’s”… all we really know is that it is a memory thing with mental confusion concerning daily activities…we have learned nothing…to many people this is just an aging problem…no wonder we get no serious funding for research to find a cure…
I have talked with a few hundred people at a local shopping center coffee gathering place over the past 2 years…I was promoting awareness and passing out June’s Alzheimer’s awareness cards and promoting her website on “June K. Berg, A Journey Through Alzheimer’s”…I would introduce my self and my purpose and then ask if they were familiar with the terms "Alzheimer’s" and "Dementia"…I do not recall anyone ever saying they were not familiar with the terms…further discussion revealed that they could not however define or distinguish between the two terms …all would then go on to reference members of their family who had Alzheimer’s or dementia such as aunts and uncles, grand parents or parents…all talked of memory problems and confusion but none talked about the real dark side of the disease…the slow death of the brain, the shutting down of body functions…incontinence, difficulty swallowing, seizures, inability to walk, talk or use their hands and arms…none realized that at the time of death, the dying brain was only 2/3rd's normal size…or how the victim would become non responsive in the last stages…or lived in constant fear…
It became apparent to me that no one unless they happened to be a primary caregiver like a husband and wife or similar caregiver, really had any understanding of the fear and darkness and physical disability in the final year of the life of a late stage Alzheimer’s victim…
I tried to do something to correct this…I prepared the above description of a day in the life of a victim in the late stages of Alzheimer’s...I used June as the example…it was my goal to provide the critical understanding needed.
I was also afraid that no one would want to hear this true and sad story of the final journey into the darkest part of the late stages of the disease…those that die early of the complications of the disease are the fortunate ones…well I was wrong…my content management programs that I use for all editing of the pages on June’s web site also keeps a count of total visitors to any of the 295+ pages on the site…the interest was surprising to me…
To date, 32,356 persons have visited this page on June’s web site because they really did and do want to know…this pages gives understanding and not simply awareness…this is the key part of the Alzheimer’s story that the movies need to show…most such movies are made before the victim depicted in the movie reaches this last stage and thus the movie story of the journey is incomplete…Stan Berg…18 February 2015.
June and Alzheimer's
June gave me a lifetime of unconditional love during our 56 year’s marriage and a life with only the regret that it is now over and that June has had to suffer the horrors of Alzheimer's. I owe June and God an unending debt!
June's passing was as if a most beautiful symphony that played during our life together, had now ceased to exist!
Before her Alzheimer's diagnosis our world and her character and personality were represented by a vast sea of bright and beautiful lights. After her Alzheimer's diagnosis, these bright lights all begin to slowly dim. As June slowly slipped deeper into the shadows of Alzheimer's, the lights gradually flickered out one by one. Eventually the time came during the last two years of her life, when the brightness that marked our world and June’s life was replaced by one of darkness.
Thereafter, I slowly lost June, tear drop by tear drop...
June rarely ever opened her eyes to a world that was then alien and strange to her. June had become so tired and weary that in the last year of her life she lay like a wounded soldier on a battlefield. Early on a Thursday morning in late October 2008, an exhausted June felt God's gentle touch on her shoulder and heard the words: "Come Home June!" God mercifully took June home on the 23rd of October 2008. June's passing leaves me with an emptiness that can never be filled!
All three above photos are by Jim Gehrz and were both taken at the Benedictine on 31 October 2007 a few days before June's 80th birthday. The photos were taken as a part of a feature article being done by the Minneapolis Star Tribune "To Have and To Hold for 55 Years". It was later published in the Minneapolis Star for Saturday November 24th, 2007.
Holding June's hand was my favorite means of communicating with her in the late stages. June rarely opened her eyes or responded in any manner. The little wooden cross was hand made and was obtained for June by Chaplain Fran O'Connor. (Fran is the Chaplain at the Benedictine "Holy Spirit" Chapel.) June held the cross tightly through out the day as she would all or any objects placed in her hand, giving it up only when put to bed for the night. It was a replacement for the gold necklace and cross (stolen) that June had worn for most of her life. June was always proud of being a Christian. Although God certainly knew who she was, she no longer remembered God. I know that she would have been proud to know that she was holding God's cross.
The stolen necklace and gold cross has been replaced with another that was also a one of her favorites and that remains with June at Lakewood. The emerald ring on her finger in the photo is also with June as is a Seiko ladies watch that I bought for June as a gift for her birthday in 2001. The little wooden cross is also now permanently with June at Lakewood. June has my man's ring. I removed it from my right hand ring finger at June's funeral and placed it on June's right hand finger. I wear June's engagement ring on a chain around my neck every day. My wedding ring which is worn all of the time on my left hand ring finger, has never been removed. I have given instructions that it is to be left with me when my final bell tolls!
Published Minneapolis Star
1. First Published in the Minneapolis Star Tribune, Celebrations-Birthdays, Thursday 8 November 2007, for June's 80th birthday under the title of: "November 8th, 2007 - A Day in the Life"...Paragraphs 1-8 in bold print above...
2. Republished on 8 November 2015 in the Sunday edition of the Minneapolis Star Tribune for June's 88th birthday...published under the title of: "A Day in the Life - Late Stage Alzheimer's"...Paragraphs 1-8 in bold print above.
Thuy Chau - St. Paul, Minnesota - (8 March 2010): "I love this picture Stan. It's so clear she is the love of your life."
Kristen Lettington Milner - (3 September 2012): "Like" isn't the right reaction. How about, "I am glad to have read this." thanks for sharing."
Lynn ONeal - Texas - (3 September 2012): "Beautiful..."
Dianne Cogar - Springfield, Ohio - (4 September 2012): "... on educating people one heartbeat at a time!"...(22 April 2013): " Words of eloquence shining a light on this matter gives us all an understanding like no other. As you share in June's journey, her being bewildered with mind wondering aimlessly through the darkest hours of Alzheimer, I can only imagine how terribly emotional this was for you, and how it will always pull at your heartstrings... Stan, yours is a consecrated voice with a loving and continual recollection of your last hours together with your dear wife. And as horrific as this time of your life was, those moments are treasures that will always connect your heart to hers as this, too, shows the world the necessity of bringing an end to this detrimental disease."
Stephanie Raley - Patterson, California - (4 September 2012): "This brought tears to my eyes. thank you for sharing...my father in law is 71 years old and has been battling for maybe 6 years and has now been diagnosed with pneumonia...and I'm so sorry for the loss of your June."
Ursula Zarecki Sypniewski - Toms River, New Jersy - (4 September 2012): "...each time I read anything you write, my heart breaks for you. Such love and devotion! You are an inspiration to a lot of people!"