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"A Day in the Life" - Late Stage Alzheimer's!

June and Stan OOct 2007

(June and Stan - Photo - Jim Gehrz 31 October 2007)

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- 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."

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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)

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*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.

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June and Stan Nov 2007

(June and Stan on 31 October 2007 - Photo Jim Gehrz)

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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 320 essays, pages and articles on June's website. Over 49,,000 people have now read it (2017) ...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...

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**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.)

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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...

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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...

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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 320+ pages on the site…the interest was surprising to me…

To date, 49,215 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…7 November 2017.

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"A Balancing Act"

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A Loved One and a Caregiver

Lifting Another While You Strive to Live

Tenderly Cleaning Them While You Ache

Missing Them While They Yet Breathe

Worries That Your Care Is Not Enough

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With Their Angry Responses

Their Needs With Your Sadness

Their Fears With Your Inadequacies 

The Decision to Put Your Loved One

In Memory Care With Your Guilt

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Your Touch With Their Yelp of Pain 

 Their Light Diming

With Your Pleas, Your Prayers

Their Withdrawal from Life

With Your Desire to Reach In

And Pull Them Back

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A Constant Balancing Act

A Loved One and a Caregiver

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Marsha 

(Marsha McKneely Ault) 

 

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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!

 

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June and Stan Berg's hands.

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Photo Notes

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!

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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.

 

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Reader's Comments

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!"

Bernadette Barbour- Jupiter Island, Florida - (7 September 2012): "We will all touch this, in some form or another in our lives. Stanton has the most personal and informative website and the most beautiful story of June. Be prepared everyone, this horrible disease is all around us, not just in the old, but in the young too."

Gabriella Rader - Centralia, Washington - (22 April 2013): "Your photo reminds me of how it was at the end with my dad. My heart and prayers are with you Stanton...June was blessed to have you be such an advocate, friend and husband to her."

Sandy Williams Spencer - Phoenix, Arizona - (22 April 2013): "Stan, you've kept June alive in memory for so many of us!"

Gilda Yen Torino - Manila, Phillipines - (22 April 2013): "Such a perfect love..."

Marie Miller Edwards - Tavares, Florida - (22 April 2013): "... amazing...Your pure love for June was and still is unmeasureable!!"

Bryn Sineath - Hot Springs, Arkansas - (22 April 2013): "It's heartbreaking. I watched my beautiful mother go from being vibrant to being unable to walk, talk, loss of interest in drinking & food, etc. I still cry for her as she's been gone for 4 and half months now. I feel as though she was my fantasy angel that never existed, but she did live and was my mother, indeed. I now live for memories of her, dreams of her..."

Richard Criscione - Cliffside Park, New Jersey - (22 April 2013): "Alzheimer's does have a face. Look to the left. There are two faces that are being affected by this affliction called Alzheimer's. Politicians do not want to look at it close enough ,as , maybe they think it's contagious ,it's not . It is just not being addressed vigorously enough with the funds to eradicate it . The perfect storm is in OUR future, and awaits us all, if this medical condition is not cured ,as the chances after age 85, are 50 % of ending up with it ! "...I was quite moved by this photo Stan ,despite I knowing. what it is like to see . Our feelings and spirit are one, and together ,hopefully we will see the light at the end of the tunnel in our lifetimes. Glad we have made friends, despite under such circumstances. God Bless you."

Emy Yokoyama De Almeida - Toronto, Ontario - (22 April 2013): "Despite not being able to open her eyes or to speak, I am sure she was always able to feel your care and love until the very end, and I believe that is the most important part!"

Debra Ash Fries - Dearborn, Michigan - (22 April 2013): "This is true love and devotion, she was lucky to have you."

Sarah Veness - Pattishall, United Kingdom - (22 April 2013): "Love is never wasted."

Melissa Vaughan - Newburgh, Indiana - (22 April 2013): "Mom is at this stage to some degree...but I am still lucky that at least once a day she smiles and tells me she loves me."

Lisa Cope - Burton-Upon-Trent, Staffordshire, United Kingdom - (22 April 2013): "Your love for June was/is beautiful, Stan... If you don't mind me asking, what was she holding in this photo? Did she like to hold things? My grandad who has dementia is in (what I hope is still) a much earlier stage than this, but I'm just curious. I've heard about people unfortunately reaching a stage where they sleep/don't open their eyes all day or just become unresponsive, but I haven't heard any mention of them being aware of objects or liking or wanting to hold them and here it looks like June is."

Dawn Laursen Galati - Orlando, Florida - (22 April 2013): "THE LOVE INSIDE NEVER CHANGES !!!!!!"

June Mac - Darlington, United Kingdom - (23 February 2014):"Oh my goodness, Mam is almost there but not quite. Its frightening and I dread it but still have some moments of lucidity, I think of you each day and all the days we have left ...so moving. thanks for sharing your story with us"

Melanie Cantin - Somersworth, New Hampshire - (23 February 2014): "Beautiful and frightening ..."

Linda Lee - Garstang, Lancashire, United Kingdon - (24 Febreuary 2014): "So sad but written beautifully, thanks for sharing Stanton. god bless."

Ann Farr - Wrexham, United Kingdom - (24 February 2014): "Beautifully written and I love the way you describe June and her personality - thanks for sharing."Jan

Jane Moore - Camelford, United Kingdom - (24 February 2014): "And a treasure she will still be as a purple angel...Every day death comes a little closer and the loss of my mother is tearing at my heart. Slowly she is disappearing from me and mine. You can see the struggle in her face and the confusion she feels when she realizes she is not as she should be. Today we made bread so she could pummel the hell out of it and I hoped it was good therapy for her! I spend all "now time" with her as nothing is retained in memory but emotionally she knows there is love and activity here and she can still contribute in her own way."

Debbie Susan Kennedy - London, United Kingdom - (24 February 2014): "Reading this Stan is what we are now going through with my dear mum. My mum has just come out of hospital after a fall & breaking her hip,they done a part hip replacement,but since having this she now cant walk,how can you teach someone with alzheimers how to walk again,not possible,she cant talk & now cant feed herself.my dad is 87 & is still looking after mum at home,he now has carers going in 4 times a day.i went down today to do there cleaning,when i got there i kissed her & said hello mum,she opened her eyes looked at me & gave a sort of smile then went back to sleep.she didnt look well & has a cough,her breathing was rattely, it kills me inside seeing my beautiful mum like this, how do I cope with it, i drove home crying my eyes out, its so very sad, my heart goes out to everyone going through this, Im sorry to waffle on but I just needed to tell someone. Thank you for your story of your dear June Stan, I know Im not the only one going through this."

Alzheimer Society of Newfoundland and Labrador, Inc. - Mount Pearl, Canada - (24 February 2014): "Thank you so much for sharing this valuable information! -Amelia White, Events Coordinator."

Sylvia Sharon Ferguson Helton - Rogersville, Missouri - (24 February 2014): "Brother Stanton...I HAD to read this...an once again my heart is SO TOUCHED...how many you help through your writing...I an Mom have discussed what is going on..in her mind..she has always been the type to face what ever..no matter how it would hurt...she always wanted the truth..though it seldom passed her lips...But I helped both of us..to know as much as possible..I will go through it with her. As is her Heavenly Father..an the Holy Spirit is in her..an guiding her an I daily..We had Church yesterday ...a friend came over..an we just had Church...the Three of us..were so Blessed...I am so thankful for every moment Mom knows...what ever...Busy making memories...here in the Missouri Ozarks..."

Marsha McKneely Ault - Nacogdoches, Texas - (24 February 2014): "You and June have and are touching many, many lives through all your posts and essays and poems and all the many hours you volunteer to teach the world about this horrid, cruel disease... The Lord hears your unspoken prayers in behalf of others."

Terry Shepherd - Warsaw, Indiana - (25 February 2014): "This is beautiful Stanton!!"

Karen Baker - Burtonwood, United Kingdom - (17 June 2014):"Most people go on about early onset .. not late stage when its turned to full dementia ... lots of dementia patients are not seen by many they are in cared for by highly qualified nurses in homes .. hospitals even send them to dementia homes .xx not everyone stays with dementia family members till the end your worth your weight in gold."

Vicki Cadogan - Limerick, Ireland - (17 June 2014): "How very true Stan, my mother is in the late stages similar to how you describe your precious June. There is no happy ending, no miracle cure going to save my beautiful mam."

Bridie Breen - Manchester, United Kingdom - (17 June 2014): "Stan I cannot see anything positive with a diagnosis of brain disease. You stayed at June's side. All the love you shared for many decades is so heartwarming. The humanity is inspiring, I wish it could be harnessed as a source of power. This world would have less war if the focus mirrored your human goodness in the face of anguish. I know so many wonderful people in a similar position as loving carers."

Helen Russin - Martins Ferry, Ohio - (17 June 2014): "So sad, but so true how Alzheimer's takes away everything and breaks our hearts as we go through this with our loved ones. Thank you for telling it like it is."

John Stevens - Twin Falls, Idaho - (17 June 2014): "I just sent this to a friend of mine whose mother died a couple week ago. She had taken care of her for years. I am trying to think of a way to put this page up on HelloPoetry maybe with a short poem and your page as an attachment/in the notes. I think I will add it to the bottom of Remember for Me on HelloPoetry also That I can do now.

Beverly A. Knowlton - Salem, Massachusetts - (17 June 2014): "So sweet and touching ."

Cindi Deweese - San Diego, California - (17 June 2014): "We are going thru the final stages and you said what my heart is feeling, all the time.. thank you for sharing."

Margaret Dula - Morganton, North Carolina - (17 June 2014): "Wow, that was heartbreaking. But thanks for sharing something so personal."

Victoria LeAnn - Little Elm, Texas - (17June 2014): "Prayers Vicki ...Stan, this brings back memories of my mom. I miss her so much and remember every minute of all the stages of Alzheimer's, especially the last stage of not only seeing my mom like this but also preparing for the day God takes her home. I pray for you everyday and for anyone with this horrible disease and their loved ones."

Pat Price - Wolverhampton, United Kingdom - (18 June 2014): "This disease is so awful. I was grateful that my Mum died before the final stages claimed her. She broke her hip and died of pneumonia. Although she'd got to the stage that we were considering full-time care she still knew her family most of the time and was still able to smile occasionally but that lost look on her face was there more and more."

Victoria Goater - Birmingham, United Kingdom - (18 June 2014): "What you've said is so very true. Every word. We are almost at the end of a roller coaster 8 years with Mum........ thank you for sharing."

Sally Cooper - Bolton, United Kingdom - (18 June 2014): "This was very much my thoughts as I went through mums 'terminal stage' we treated in very much the same way you would someone in the later stages or final stage of cancer , good days we celebrated and filled with purpose, bad days we filled with care and reassurance. Mum knew what the end stage looked like and had told us very early on what her wishes were, it would have been easier had she written it down legally, but we did manage to advocate her wishes verbally with the docs during her last 12 weeks. I am all for positivity and promoting the positive messages but hard conversations need to be had when people are able to communicate."

Irene Mackay - Falkirk, United Kingdom- (18 June 2014): "Hi Stan. What you say is so true. They also talk about dignity, there is no dignity in the latter stages of dementia. My Mum is in the late stages and suffered another stroke 2 weeks ago, a very bad one this time, not just a little TIA as they call them. She can now no longer walk or feed herself and when I visit her there isn't much response from her at all. A Social Worker recently said to me that it must make the relative of someone with dementia feel so much better if they are happy in their dementia. People who have no experience of living with a relative who has dementia haven't a clue. I'm afraid that I find it impossible to feel good about seeing my Mum change from day to day from the person she once was to someone who to me now seems totally lost and unable to do focus on anything. My Dad isn't as strong as you are and can no longer cope with seeing his wife the way she is and no longer visits. It must have been so hard for you and you have my admiration. Best wishes."

June Mac - Darlington, United Kingdom - (18 June 2014): "Oh Stan your post is brave and true and brings me to tears. I know my mum is not too far off that stage, i know that it is coming and i treasure each day she can still speak to me. even though her stare is kind of blank and she really does not know what is going on. I love her with every beat of my heart and i pray that tomorrow we will lose no more of her. Its so heartbreaking. i know and feel how much you miss June, I wish that i could give you comfort but all i can do is send my love and hugs and know that June would want you to Care for yourself more than anything and she would be so proud of all you do. Thank you Stan for yours and Junes inspiration. I will keep treasuring each moment we have with my dear mother."

Valerie Cowley - Reading, England - (19 June 2014):"It's not a nice thing to have it's like waking up to find a stranger in your bed because that's what they become to you so not like the person you married or you mum dad sis bro so very hard at times so hard."

Sandy Billingsley - Austin, Texas - (20 June 2014): "There's a reason why your essay received 28K 'hits..' It absolutely tells about the horrors of Alzheimer's in beautiful prose."

Louise Ann Howard - Batemans Bay, New South Wales, Australia - (20 June 2014): "Sad to think that folk with an illness like this is portrayed so so wrong. Living with it is far far different. They have real feelings etc to be met just like a non ill person so why are they treated differently. It should be as we would like to be treated. With love and respect see the person not the illness. Talk to the person not the illness... It is a very long road looking after them. Exhausting 24/7 no relief at times. But we do it because of love unconditional love. Pity that politics cannot see the need for help...

Gary Irvin - Gillespie, Illinois - (20 June 2014): "Thank you for sharing. Sadly, it's all too real for my Mom...I, along with others, have shared very personal feelings with a group we trusted, only to be called down by an "administrator". Honestly, I've pretty well shut down, building walls to hide behind. Maybe someday, I'll be able to break them down. In the mean time, kind souls like S.. and others keep me grounded. I know what the future holds. I will accept it, I have no choice. Thank you for caring...You, and June through you, touch many lives. You make a difference. Never forget that."

Gill Denman - Essex, United Kingdom - (19 February 2015): "Nothing will change while social servies and the NIHs won't fund care for dementia, saying it is a social not a medical problem. What hog wash. They should spend 24/7 with a person screaming with delusions and fears, attacking those around them, mind games and finally dying in a quite horrible manner when they forget how to swallow. All very well making films about the famous but I doubt they portray reality - the only way to portray dementia is to make a horror film, I doubt they would ever make a realistic film, it would shake the world too much."

Angela Brown - Burnley, Lancashire, United Kingdom - (19 February 2015): "Stanton, as long as we are kept in the dark by the medical profession and all other agencies, people will not be aware. It is people like you and others on this site who raise awareness..Since mum's diagnosis, not one medical person has told us what to expect. They leave you to struggle and deal with so much, without any advice or information, it's gobsmacking."

Susan Milo Maroulis - Charlotte, North Carolina - (19 February 2015): "I really appreciate your writing- thank you."

Veronica Campbell - Grangemouth, United Kingdom - (19 February 2015): "So true thank for sharing...Stan, love reading your posts as they remind me so much of my mum who is in the latter stages of Dementia just now."

Dotty Masters Ragan - East Texas - (19 February 2015): "Oh, my, Stanton. I wish I had known this before. But even if I had, I don't know that I would have been any comfort to my dad in his last days of dementia. The poor guy would continue to become so confused. He'd get so frustrated at himself for not remembering a lot of things. He went downhill after he broke his hip last year. We had some hope that he might be okay after he would be walking to the bathroom after his surgery. But when he went to the nursing home for rehabilitation, he tried to get out of bed and fell again. The second time he fell, he had dislocated his hip joint (I think) on the other leg opposite of the side he had just broken it. He didn't know anyone, not even his wife. Now I know what he was going through. I'm so glad he didn't have to suffer, mentally, anymore. He wouldn't do the rehab exercises because it hurt when he did, of course, because he didn't understand (and there was no way that he ever would) that he had to work through his pain to heal. At the end, his gall bladder started getting infected and he was in so much pain and so sick from it. He passed away the next morning, after I went to see him (on Father's Day) last year. I felt guilty for doing so, but I kept praying that God would take him home so he wouldn't have to suffer anymore. I try to remember my dad when he was well, mentally and physically. He loved to play the fiddle an

Emy Yokoyama De Almeida - Totonto, Ontario - (19 February 2015): "I agree totally Stan! In January I was in a special screening for "Still Alice" promoted by the Alzheimers Society Ontario, Baycrest and Women's Brain Health. It was said that this movie could do to AD what the movie "Philadelphia" did to AIDS.But as you said, "Still Alice" also does not depict the late and end of life stages of the disease. I had read the book and I knew how it was going to end, but when the person who was presenting made the comparison with "Philadelphia" it automatically came to my mind that for that, the movie should show the person's trajectory until the very end as Philadelphia did. I hope that both Campbell's movie and the movies you mentioned and Still Alice help general population to start talking more about the disease, but we need "serious" awareness. Most people still think AD is about memory loss and confusion only, and I agree that influences the lack of fundings for research. You do an amazing job with awareness, and June's blog is a key part of you work. Thanks Stan!"

Joanne Ovey - Barnstaple, Devon, United Kingdom - (19 February 2015): "I think what you are doing trying to promote and teach people what an awful disease alzheimers and dementia are, is wonderful I was in denial for awhile when my dad was told he had it and i can see now the person I love is slipping away. but reading and learning about this has made my journey a little easier knowing what will happen. Thank you so much."

Kathy Williams - Madisonville, Texas - (19 February 2015): "I think this is one of the most accurate "portraits" of a day in the life that i have read...it is true so many people think it's only "memory", oh how I wish this was true !! If Edith only confused our names, this would be the highlight of our day! Instead we have the "small victories " that NO ONE but other caregivers understand...like the day Edith used the bathroom IN THE TOILET by herself for the first time in months! I wanted to shout from the rooftops! But again no one would get it so I cheered for her and clapped and made a big deal out of it to her...we even had ice cream! Yes it was that big of a deal! Again thank you Stan for sharing your beautiful June and YAll's journey... it is so helpful to me ! Much love and blessings!"

Connie Sue Lowers - Decatur, Tennessee - (19 February 2015): "Educating on this is so very important I completely understand the ugly side of Alzheimer's having cared for my mother for the last three years of her life I can't seem to get over her death and what she went through. God bless you Stan for getting the word out there!"

Julie Garner Jones - Sale, Cheshire, United Kingdom - (19 February 2015): "You are right Stan, nobody really understands. I would with your permission post this on my creating a dementia community Facebook page. (Permission Granted.)

Tom O'Neil - Santa Clara, California - (19 February 2015): "Very Well Done Stan, agree that only a caregiver can really understand what dementia is like!"

Julian Kruger - Miami, Florida - (22 February 2015): "Thank you and very well said."

Jan Allen - Norwich, Norfolk, United Kingdom - (23 February 2015): "Well said Stanton...as always ! Maybe depicting the stark reality of the disease would be unpalatable . I totally agree with you and struggle with the attitudes of those around me who would be far more "interested " if my MIL had sonething like cancer . Maybe it's too distressing a prospect for some to be faced with the disease ' s stark reality ?"

Joyce Dunne - Liverpool, United Kingdom - (23 February 2015):"I agree Stanton ,I have seen it (Still Alice) and was not impressed."

Debbie Deacon - Milton, Hampshire, United Kingdom - (23 February 2015): "I have seen the film (Still Alice) and although I found it moving and powerful I too was disappointed by its ending. I have worked with people with dementia for 17 years i know that its far more than memory loss. It worries me that the exposure this film has generated will leave those who havent had any first hand experience of dementia thinking that its all the memory."

Sandra Wilson - Chorley, United Kingdom - (23 February 2015): "Wow Stanton... And yes the latter stages, so awful..."

Caroline Grange - Galway, Ireland - (15 March 2015): "You say it as it is Stan, my mum died Jan, after my taking care of her for several years, the last 4 months were the worst in my life, the most awful disease, I love and miss her incredibly."

Ena Castle - Hervey Bay, Queensland, Australia - (22 October 2015): "Stanton I was so moved as I read you post again. How strong you are in your wish to give us the reason to keep on keeping on and how you and June were so devoted to one another. The deep despair you were feeling then and now . God bless you and JUNE. One day you will be together again.What a celebration that will be for you both. Hugs Ena."

Neale Lundgren - Atlanta, Georgia - (22 October 2015): "I hope you have turned the above Stan into a book. It is powerful. Much love to you this night of your longing for reunion with your beloved June. All is and will be well in the heaven where she dwells and toward which you are moving."

Paula Valentino - Palm Harbor, Florida - (23 October 3015): "Stanton - tears to my eyes. Thank you for sharing all that you do. It helps to know we are not alone on this journey none of us wanted. I never knew how prevalent dementia and Alzheimer's was until mom got it. It is like a thief coming in and stealing my mom; one atom at a time. frown emoticon Thank you for making the journey just a little easier on all of us who stand by and watch our loved ones decline. I really like the way you write, too...Thank YOU. Somehow, you make a helpless situation a little more bearable with your writings."

Debbie Susan Kennedy - London, United Kingdom - (23 October 2015): "Stan how you have explained is just how my dear mum is now,went down to see her today,dad still has her at home with the help of carers.shes in her chair just like June in your picture,the whole time I was there she didn't wake up,she is just like a baby,I just cherish the time I have with her,I feel your pain Stan,thank you for sharing your story."

Dianne Cogar - Springfield, Ohio - (15 November 2015):"What a beautiful tribute Stan!!! If possible, every year, one could count the birthday wishes June will surely receive by the number of stars that flicker in the night on that special date... and all because of her loving husband, Stan, who so generously has shared, and continues to share, "the beautiful life of June & Stan" with us all ever since June's departure. From their examples, this amazing couple teaches us the value of faithfulness, happiness, and true love. And, if not for the extensive research, and unfortunate experience that Stan, himself, had been through, many of us would be clueless about the dreadful disease, Alzheimer. Thank you Mr. Berg for your stories, your time, and valuable resources. I hope you know that you are so very appreciated! HAPPY BIRTHDAY June... we're all very blessed to know you and your wonderful husband, Stan."

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June's Passing

June 1994

On October 23rd, 2008 June was taken home to Heaven after almost eleven years of an exhausting battle with Alzheimer’s. June's last three years and 8 plus months were in an Alzheimer’s facility. Her last years were at the Alzheimer’s “Villa” of the Benedictine Health Care Center of Innsbruck, New Brighton, MN. See the funeral notice as published in the Minneapolis Star - Tribune. It is located on the top blue navigation strip under the label: “In Memoriam”. or Click on the below link:

June K. (Rolstad) Berg – In Memoriam ”.