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Fear: The Alzheimer's Victim's Constant Companion

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“Pray, do not mock me: I am a very …old man,...Fourscore and upward, not an hour more nor less; And, to deal plainly, I fear I am not in my perfect mind. Methinks I should know you, and know this man; Yet I am doubtful for I am mainly ignorant What place this is; and all the skill I have remembers not these garments; nor I know not Where I did lodge last night. Do not laugh at me;”   (William Shakespeare (1605) King Lear, Act IV, Scene 7)

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From King Lear we find this perfect description of Alzheimer's and from that setting we go to these quotes to further shape and set the stage for this essay discussion of fear.:

 “No one ever told me that grief felt so like fear”  C. S. Lewis

“Fear of the unknown is a terrible fear"  Joan D. Vinge

"The oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear is fear of the unknown."H. P. Lovecraft

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The above quotation as taken from Shakespeare’sKing Lear” uses the words “I Fear” in perhaps a different meaning or context than we are considering in this discussion. A fear of another type is more probably the point of this quotation. However, this quotation from the literature of the early 1600’s is a strikingly good description of the world of an Alzheimer’s victim 300 years before the disease Alzheimer’s was even defined or named. The quotations of the word “Fear” that follow, do however fit rather well into the meaning of “Fear” as it would be known to the Alzheimer’s victims in their current day to day existence!

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Fear was also the subject of the recent “Alzheimer’s Blog” by Angela Lunde of Mayo Clinic on17 May 2011. “Fear drives shadowing of Alzheimer's caregivers”. Angela discussed the subject of Fear as a constant companion of the Alzheimer’s victim in the late stages. Angela is the Mayo Clinic Health Education Outreach Coordinator.  Angela tells of receiving a message from a gentleman who referenced his support group meetings in which the subject of “Shadowing” by the Alzheimer’s victim would frequently come up for discussion. Shadowing is the act of the Alzheimer’s patient in attempting to keep the caregiver in sight of the patient at all times. This was said to result in the caregiver feeling somewhat smothered and with a feeling that their personal space is being violated.

     Note: I must say that as a spouse caregiver for my wife June, I find it hard to imagine any husband or wife feeling smothered as the result of a spouses actions of this kind. My own reaction is one of shock that anyone would react in such a selfish manner to an obvious display of fear by their loved one. Perhaps it is more understandable with another family member or a friend. The focus should be on removing the fear as much as possible and not a focus on themselves!

Ms. Lunde discusses this “Shadowing” behavior as follows:

“In people with Alzheimer's, I believe shadowing represents the message of uncertainty, insecurity or fear.”Where am I? What am I doing here? What am I suppose to do? Where am I supposed to go? Do I know you?" Consequently, caregivers represent a lifeline, security, a protector, and an anchor to oneself.”

Ms. Lunde also concludes that this behavior is most often prompted by the. emotion of  “Fear.

Ms. Lunde suggests that persons with Alzheimer's “will feel content and safe if they have a predictable daily routine”…sorrounded by “an environment that is calm, and receive a daily dose of reassuring messages.” … that these messages should “be simply stated, short, and always the same”.

"You are safe. Everything will be OK. It's good that you are here. I love you."

 

Mayo Clinic (Ms. Lunde) on 26 June 2012 makes this statement about "Fear" associated with the word "Alzheimer's:...

"The word Alzheimer's can stir up such intense fear that it can inhibit any discussions of it with friends and even some family members."

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Christine Fournier in her book, "On The Sunny Side of the Street" (2002), tells the story of her mother's journey through Alzhiemer's. In the book she describes an incident that readily portrays the fear to be found in the lives of the victims of this terrible disease.

"Her eyes held a terror that was frightening. She crossed the room and hugged me with all of her strength. Her arms were trembling as she spoke in a voice that sounded distorted and thin. "Chris, I'm so scared, don't leave me!"

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Little Children as Anxiety, Fear and Stress Relievers

June always loved little children and especially little girls.  June when seeing little children out in public, would frequently engage them in friendly conversation. While I never was one to accurately estimate the ages of little children, June would almost always be “right on” in her estimates. Little children never appeared to be afraid or apprehensive of June and would almost always respond to her greetings and her friendly questions…perhaps it was her signature smile…as the daughter of one of June’s cousins described her…”she was the lady with the friendly smile and kind eyes”…

June never lost her love of little children during her journey into the shadows of Alzheimer’s…It was my observation that little children were a form of therapy for June…a little child and particularly a little girl could quickly dispel June’s sadness when the effects of Alzheimer’s dragged her down. This same effect I could note on other Alzheimer’s residents when family visitors would bring smaller children with them during a visit. Unfortunately most visitors would not bring smaller children with them. Most visitors probably would not or could not understand the positive effects that smaller children would have on a family member suffering this terrible disease. Most would not think of little children as anxiety, fear and stress relievers!

I recall the time when June and I were sitting in an activities room at the Wellstead of Roger’s (Alzheimer’s Assisted Living Facility)…June at the time was in late middle stages of Alzheimer’s  (June’s 8th year with the disease.) June was sitting quietly beside me and appeared sad and in a depressed mood…she sat with her eyes closed having no interest in what was going on around her…just then a lady visitor with a very cute little girl approached, talking and visiting with other residents…as she approached us, I said to June, “Look, there is a little girl”…June opened her eyes and immediately a big smile came on her face and she joyfully bent down and hugged the little girl…immediately thereafter, June appeared to be in a happy mood! Such was power of little children when interacting with June!

I also remember the time that June’s sister Lynda brought one of her granddaughters Chelsea with her when she visited June at the Wellstead. (June's Neice) June always loves children visits. I can still picture June resting her head against this little girl’s head and appearing to be relaxed, happy and at peace with the world…I also think that little children occupy as special place in God’s world and perhaps with perceptions that adults do not have or understand…

 

Matthew 19:14 (KJV): “But Jesus said, Suffer little children, and forbid them not, to come unto me: for of such is the kingdom of heaven.”

 June and Chelsea 2005

(June happily resting her head on her neice Chelsea)

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As indicated  earlier above, one of Angela’s conclusions was that: “Shadowing can have the Alzheimer's caregiver feeling smothered and their personal space feeling violated.” I am happy to say that I have never had such feelings about June. I have only had feelings of empathy, concern and sadness while trying to imagine what June’s world was like at that point in time. There is little question but that the Alzheimer’s victim is in a constant search for peace in their world of Chaos called Alzheimer’s. I would agree with Ms. Lunde in that there is little question but that the world of the late stage Alzheimer’s victim is most often a kingdom of fear!

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June's library has a small book - "Words From the Heart" (1993) that has this quotation and clever but yet profound saying by an unknown author:

"Fear is the little darkroom where negatives are developed."

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In late 2007 I wrote a tribute for June’s birthday that was published in the Minneapolis Star Tribune. I then included it in June’s web site in the “Tributes” section of the site. Of the 190 plus articles, this one is the most popular of all the articles on June’s site. At the beginning of the tribute I tried to paint a word picture of what the world of a late stage Alzheimer’s victim is like with all of their fear, anxiety and confusion.

June 1994June, today is your birthday. Your ten 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 fearsome. 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 and solitude. Your signature smile that would always light up your face is forever gone with only an occasional trace. 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. 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

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I find that my own past experiences are much in keeping with Ms. Lunde’s suggestions. When June was in late stages and largely unresponsive and sitting with her eyes closed, I would try to surround her with a world of love that I hoped would provide a comfort zone for her. I would sit with her, simply holding her hand and assuring her that:

 “I loved her and would always take care of her”.

This simple comment is one I have made to June numerous and probably hundreds of times during those dark sad days. One must keep in mind the damaged memory that such comments would fall on and the need for repetition.

 

June and My hands 2007

(Jim Gehrz Photo - 2007)

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The early and middle stages also have their periods of fear in the life of the Alzheimer’s victim. There is always a fear of the future and of the unknown.

June and I would go to the Mayo Clinic once a year during her early stages of Alzheimer's. (2001-2003) This annual yearly trip resulted in interviews by the Alzheimer's research center staff as well as an MRI of June's brain. The appointment would take up an entire day. We would usually go down to Rochester the evening before the appointment. For the first two years these trips appeared to be no problem for June. The third year however was very upsetting to her. An incident during this trip and the return home, etched into my mind forever, the fear factor that is always lurking in the brain of the Alzheimer’s victim. Shortly after we returned home that year, June suddenly blurted out to me:

"I thought that we would always be together".

I then told June that "we will always be together". She then said to me:

"I was so afraid."

I do not know if June’s fear was a result of something that the Mayo staff said to June during their interviews on that third trip or just June’s anxiety and fear during the process. I decided we would not return the following year. The purpose of the visit was essentially to update the research staff on her progress. There appeared to be no benefit to June nor I and the anxiety and fear that resulted for June was not worth the effort of continuing the trips. Mayo was not actively treating June. It was essentially in effect, a slow death watch and a source for research data for Mayo. Mayo seemed to be in agreement with my decision to stop the visits considering that June was now in the 6th year of her Alzheimer’s journey since her diagnosis.

Their final report (19 June 2003) ended with:

“We are not going to see Mrs. Berg in follow up in the research Center because of the severity of her dementia at this time, but we will try to keep in touch by telephone.”

The further contacts by phone did not materialize.

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Reader's Comments

Stephanie Grier Bunker  - Tehachapi, California - (1 February 2013): "Beautiful!"

Lori Nelson Pollitt  - Dallas, Texas - (1 February 2013): "The little children flocked to Jesus, too.  June exuded the love of Christ and the warmth of the Holy Spirit...The children were also heaven sent medicine for June. Blessings on both sides"

Dianne Cogar  - Springfield, Ohio - (1 February 2013): "Sweet..June looks so huggable! Makes me miss my own mother terribly!...Loving and touching picture...Makes me miss on mom even more!"

Laura Carter  - Stoke-on-Trent, United Kingdom - (1 Febrauary 2013): "I always love reading what you have written. This choked me up. I love this picture and the little girl was right about the friendly smile and eyes. June has one of those genuine smiles that doesn't just reach her eyes but takes over her whole face. Whenever you post a picture of her smile it never fails to make me smile back. You are right, my 2 year old is a brilliant form of therapy for grandad and we have them together on most days :) I hope you are well."

Allison Sauvlet  - Toms River, New Jersey - (1 February 2013): "I only wish my father would have lived to see my grandson. How he would have loved him!!!!"

Gretchen Berg(Granddaughter) - Minneapolis, Minnesota - (2 February 2013):"Sweetest woman in the world."

Lisa Cope  - Burton-Upon-Trent, Staffordshire, United Kingdom - (2 February 2013): "There's so much love in June's face in this photo, it's precious. I agree there is definitely something about little children, their spirit can be infectious."

Catherine Jones-Hatcher  - Richmond, Virginia - (2 February 2013): "Such a sweet picture.... how special for Chelsea to have this!"

Melanie Jean Gardiner  - Sidarion, Kerkira, Greece - (2 February 2013): 'Beautiful photo..."(June and Chelsea)

Christine Pickard  - Lincoln, Lincolnshire, United Kingdom - (2 February 2013): "The photo says it All ,this is a precious photo ..."

Anne Moghraby  - Solihull, United Kingdom - (2 February 2013): "Lovely photo..."(June and Chelsea)

Vicki Cadogan  - Limerick, Ireland - (2 February 2013): "I have a 2 year old little boy who absolutely loves my mother who is the late stages of this terrible disease, he always has a big kiss and a hug for her. It lights my dads heart to see how much he loves her.   When my mam sees My son Harry she even manages a little smile for him.  My mother always adored children."

Sally Gore  - Mason, Ohio - (2 February 2013): "What a lovely photo....Thank You for sharing !"

Felicia Senz  - Naperville, Illinois - (2 February 2013): "My mom is the same...she just lights up when she sees children."

Sandy Frere  - Oppenheim, New York - (3 February 2013): "What a beautiful photo..." (June and Chelsea)

Bryn Sineath  - Hotsprings, Arkansas - (4 February 2013): "Love, Love, Love the picture! June looked very lovely and loving."

 

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June's Passing

June 1994

After battling Alzheimer's for almost 11 years, an exhausted June was called home by God on October 23rd, 2008. Her 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".