June K. Berg's Journey into Alzheimer's - 1997-2008
- Published on Friday, 30 May 2008 21:26
- Written by Stanton O. Berg
Alzheimer's is a terrible and relentless terminal disease in which the brain cells (Neurons) slowly die and gradually shuts down the various body functions as the disease progresses through the early, middle and late stages and over a period of years. Short term memory is the first to go. The brain is the body's control center. Eventually it may be unable to instruct the legs how to walk and the victim must be in a wheel chair. Some victims have seizures, some are incontinent, some have difficulty with speech, some have difficulty eating and swallowing, some have hallucinations and some have periods of sadness and crying. June has experienced all of these terrible symptoms that go far beyond a simple memory loss. Most people associate Alzheimer's only with memory loss. The memory loss is the least difficult of the many symptoms that one must contend with. June needed help eating, dressing and bathroom. June suffered many falls. June suffered a fractured pelvis during one of her falls that went undetected (while she suffered without help) until it was found to be partially/almost healed. On a daily basis June was forced by this terrible disease to visit what was to her, strange and unrecognizable places populated by people that she did not know. By the time that death occurs, the average Alzheimer's brain is only 2/3rds the normal size.
(The photo above right is of June in February 1998 one month after her diagnosis of Alzheimer's. Photo was taken at a conference of the American Academy of Forensic Science in San Francisco.)
Alzheimer's kills over 228 people every day in the United States alone and the rate is rapidly increasing. It is the 5th leading cause of disease deaths in the U.S. .
June was diagnosed with Alzheimer's on Monday January 26th, 1998. (University of Minnesota and later verified by the Mayo Clinic.) June was concerned about short term memory problems that she was having in 1997. June brought this concern to the attention of her Doctor of Geriatrics at her annual medical examination in December of 1997. The doctor then arranged for June to be tested at the University of Minnesota. The diagnosis was early stage Alzheimer's. The day June and I received the bad news was Black Monday for June and I. At first for June, as is normal, the disease was mostly one of the loss of short term memory. This was followed by a gradual loss of the long term memory and cognitive powers.
The mood and personality changes then took over. The memory losses are easy to handle. The cognitive changes along with the mood and personality changes are heart rending. June had hallucinations so that at times she did not beleive that our home belonged to us and that the real owners were coming back to harm us. One time in the middle of the night I found June hiding behind a chair in our living room. Some times June would look at me as a stranger who did not live in our home and would order me out of the house. Another time in mid winter and without a coat she ran away to a neighbor's home. She would talk about wanting to "go home." I am told by Mayo and others that this is a common request by Alzheimer victims and usually refers to a childhood home. Since the long term memory is the last of the memory to go, they may still have childhood memories of home.
This phase of hallucinations, anger, and moods of sadness took place in late 2004, which was late in June's eight (8th) year of her travel into Alzheimer's. She was placed on Haldol an antipsychotic medication. The Haldol did nothing for her that I could see and after several months she was removed from it. This phase proved to be a passing one as are most phases or stages of Alzheimer's. I learned later that Haldol was a dangerous drug not approved by the FDA for Alzheimer's or other dementia victims. It greatly increases the risk of death and has many side effects. This drug is now labeled with what is called a "Black Box" warning!
See essay on "Dangerous Drugs for Alzheimer's Dementia." It also increases the risk of falling.
June in her pre Alzheimer's days was the one who on her own, took her mother and stepfather on a coast to coast tour of the United States while doing all the driving and navigating. June was also the one who taught me how to travel around the city of London economically and quickly by using the underground system. I had always used a cab because I thought the London underground was too complicated and slow until June showed me the way. While I was attending Forensic meetings during the day, June was navigating all around London on her own. Over the years she did the same in Zurich, Rome and other large European cities. In later Alzheimer years when June first became a resident at an assisted living home, she could not find her room at that facility although her picture and name was alongside the door.
(The photo below right of June was taken at The Wellstead on 6 November 2005 during a family birthday party for June. June here displays a distinctly faded look as she has slipped deeply into the shadows of Alzheimer's.)
On March 16th 2005, it became necessary to place June in the care of the Wellstead of Roger's an assisted living facility that specialized in Alzheimer's treatment. This turned out to be an unfortunate decision. On 13 March 2006, I registered a written complaint to the Administration of the Wellstead in which I expressed dissatisfaction with their management of June's care. I told them that they were in effect "slowly starving June to death" by their lack of competence in properly feeding her. (June had lost almost 19 lbs. in the year she had been at the Wellstead. June weighed 136 lbs. when she arrived at the Wellstead and weighed only 117.5 lbs. at the time of my complaint.) The Wellstead accepted no responsibility and responded with a letter (13 March 2006) that demanded June and I leave the Wellstead "effective May 1, 2006" or "at the earliest possible date." This letter was contrary to the fact that the Wellstead previously gave us a document that outlined our "right to present grievances and File Complaints" and to be "free from any form of retaliation."
The Wellstead staff also took the position that June's weight loss was due to June being in the end times or "late stage" of her life. (June would not live more then 6 months.) They suggested Hospice Care. In the Wellstead termination letter of 13 March 2006, Wellstead President Wisko stated "As a result of June's decline, we will be relocating June to our late stage care household as soon as a resident's room becomes available. (None became available!) This late stage household is designed to provide the quality of care required for residents qualifying for "hospice" care, in addition to having additional care providers to provide "late stage" dementia/Alzheimer's resident care." Their position was supported by the doctor who was overseeing her medical care at the Wellstead. It turned out that the doctor was as ignorant as the assisted living home staff.
I felt their position was incredible and ridiculous. I did however acquiesce in the care change. This care level change did not however take place prior to our leaving the Wellstead in accordance with Wellstead's demand that June and I leave.
June was placed on Hospice care shortly after arriving at the new facility. History however shows that I was right and they were grossly wrong. A competent staff at the Benedictine where we relocated June, quickly restored most all of the weight that June had lost while at the Wellstead. June also lived 5 times as long as they said she would!
This photo on the right of June and I was taken a few days after June's arrival at the Benedictine Health Care Center of Innsbruck, in New Brighton, MN. The photo was taken on the first week end following her arrival at the The Benedictine on March 24th. The Photo was taken by a family member and is dated 2 April 2006. It shows June in her room No. 207. The family had gathered on that first weekend as a show of support for June. We transferred many items from our home in an effort to make the room seem more friendly for June. The corner of the picture seen over my shoulder is a large picture from our living room that was a favorite of June's. ("Sunday Morning in Sleepy Hollow" - Washington Irving.) The wall opposite has another favorite picture of June's from our living room at home, showing a country farm winter scene. One of the living room chairs from our home was also transferred to her Benedictine room. Over June's head is seen the bottom of a third large picture from our bedroom at home. It shows Jesus praying in the Garden of Gethsemane. I positioned a small gold cross mounted on a walnut background, opposite her bed near the foot of the bed and in line with her normal eye direction when laying in the bed. It was positioned so that on waking up, her eyes would see it. Knowing that June would be confused, I hoped that this cross would be comforting to her and that she would not be afraid. I had an Elvis CD of his best Gospel songs on the little player on the bedside stand. Every afternoon following June's nap wake up time, I would start it playing and I would try to sing along with Elvis on one of June's favorite Hymns: "Take my Hand Precious Lord". I can not really sing but Elvis woiuld over-ride me and it would not sound that bad. This picture is always sad to me. Only a few months later, June would no longer be responsive to me or anyone. June would mostly remain with her eyes closed, drawing a blind on a strange world that she no longer understood or recognized. This condition remained largely unchanged until her death 2 years later. I find it hard to view this picture without becoming emotional.
Because "Eating" and feeding problems are common problems with the late stages of Alzheimer's and because most nursing assistants are not well trained in this area, I have since written an essay on the special considerations for assisting the Alzheimer's victims in eating. This essay, includes many suggestons as well as June's experience with eating. I developed techiques for assisting June in her eating and as a result I would train some of the nursing staff utilizing my techniques. Later, some of the Nursing Assistants became very adept at assisting June to eat and developed their own techniques that were superior to mine. See further discussion below. This is all recorded in the essay. Please click on the link:
Note: During June's previous one year stay at the Wellstead there is a record of June falling eight (8) times. These 8 falls all took place during the last 7 months of her stay at the Wellstead. Although I was at the Wellstead many hours every week, none of the falls ever took place during the time I was present. The last fall (February 2006) so demoralized and frightened June that she no longer would walk and she was confined to a wheel chair for the balance of her life. (Three falls were recorded in a single month - February 2006.) X rays taken on 2/10/2006 revealed a pelvic fracture that was almost healed. This would indicate that June had suffered alone with a pelvic fracture that was undetected, untreated and healed on it's own! June's year at the Wellstead was also a very sad time for both June and myself. Daily, June would have episodes of sadness and crying that would frequently leave me feeling depressed and emotional at the end of the day as I drove back to the house that was once our home.
Because "Falls" by residents of Alzheimer's facilities are a common problem and because of the large number of falls by June, I made a special study of this problem. I found that drugs frequently plays a large part in such falls. Again I prepared an essay on the subject, that contains my and June's experience as well as the studies and experiences of others. To review this essay, click on the below link:
(The photo below right is a candid picture taken by Jim Gehrz at the Benedictine on 31 October 2007. Stan is pushing June down the hall in her Geri Chair on the way to the "Holy Spirit Chapel".)
We were fortunate in quickly finding a nice facility that was literally a "stones throw" from the house that June and I lived in for nearly 40 years and her old neighborhood of nearly 50 years. (The Wellstead was 21 miles away.)
Maybe this is God's response to my prayers to bring June home. June became a resident at "The Villa" (3/24/2006) which is the Alzheimer's wing of the Benedictine Health Center at Innsbruck in New Brighton, MN.
I found the Benedictine to have a very positive and entirely different management atmosphere. This is probably due to the facts that unlike the Wellstead, the Benedictine is non profit, it is Medicare approved and a Faith based or Spiritual based Organization. Also unlike the Wellstead, the Benedictine has a full time staff member (Marilyn) whose only duty is training and retraining the nurses and aids. The CEO (Susan) takes her turn as front door receptionist when needed. A front office staff that assists with resident feeding.
For the first time I found a staff that was competent to properly feed June. June quickly replaced most of the weight she had lost at the Wellstead. The Hospice program that June was on (Twin Cities Hospice) removed her from the program when she did not die soon enough to suite the requirements of the Federally sponsored (Medicare) Hospice program. When June eventually passed away, over 2.5 years had elapsed since leaving the Wellstead. June lived five (5) times longer than the Wellstead and the doctor said she would. In the Evercare Medical report filed on 10/20/08 at the Benedictine (3 days before June's death) June's weight was recorded as 132 lbs. June had restored most all of the weight she had lost at the Wellstead.
(Photo below right is a candid picture taken by Jim Gehrz at the Benedictine on the morning of 31 October 2007. June and Stan in front of the "Holy Spirit" Chapel.)
Note: The Hospice Programs administered by Medicare can only be considered as a "Train Wreck" from the standpoint of Alzheimer's care. Alzheimer's is a very different disease from most terminal diseases and the criteria for administering it needs to be revised. I saw a number of cases where an Alzheimer's victim was placed on Hospice only to be removed when they did not die as the program required. Many died as June did, while they were not on the program. It appears to have been designed for cancer where the "10% weight loss rule" (A Hospice "Gold Standard") is more appropriate.
Hospice needs to be modified in order to be realistically applied to Alzheimer's. It is a fine program when operating, however it is frequently not available when needed the most by the Alzheimer's victims. When Hospice is used in a nursing home setting however, there is significant waste as there is a duplication of certain standard care procedures. (feeding, bathing etc.) This results in duplicate payments to both Medicare and to the Nursing Facility for the same care items.
June was a lady who during her life time, gave little import to her own accomplishments and was totally without guile or pretense. June has never strayed far from the personality and character found in that Colfax WI farm girl. June gave me so much and now I could give her so little.
Although I was spending around 32 hours a week with June during her last years, I felt helpless most of the time and frequently could do little more that hold her hand and tell her I loved her and would always care for her.
When a loved one is in the late or last stages of Alzheimer's, one sometimes feels at a loss as to how to proceed during such visitations with a loved one. I have compiled an essay that deals with such visitations with suggestions for both friends and loved ones. Please click on this link to review that essay:
June has given me a grand life and has so captured my heart that she is the first thing on my mind in the morning and the last thing at night. To me June is a very special and unique person who is the light and love of my life. June is the Orchid that I found while searching for a rose. June was that once in a lifetime find. To those who love Sherlock Holmes, June is my Irene Adler - "The Woman".("A Scandal in Bohemia") While I have many faults, June had none. June never seemed to take note of my many faults and loved me just the same.
Although June is now gone from the house that was once our home, I still find her presence in every room that I enter and in every drawer, cabinet or closet that I open. I find her presence in hundreds of poignant little reminders.
I asked God many times for a miracle cure. None was forthcoming. Prayers by the Pastors of our church (Redeemer Lutheran), friends in the Catholic Church, The Billy Graham Staff, Pat Robertson's staff at CBN, and the Benny Hinn Crusade (October 2004 - Target Center) all met with failure. There is no record of a miracle cure ever taking place for Alzheimer's.
(Photo below right of June and I was a candid picture taken by Jim Gehrz of the Star Tribune on the afternoon of October 31st 2007 in the "Holy Spirit" Chapel at the Benedictine.)
When June was in the final stages of this disease she required total care. She could not walk, talk or eat by herself. June would usually lie motionless staring straight ahead. Most of the time her eyes were closed. She was for the most part non responsive. Feeding her was difficult. Her food was pureed and had to be fed to her spoon full by spoon full. She would not always open her mouth to accept food or drink. Sometimes she would have difficulty swallowing and would choke and cough. Her life was merely one of existence.
June and I were fortunate in that there were a number of very talented people at the Benedictine that possessed a unique talent and a special connection with June that enabled them to feed her when no one else could. (Pam, Meicy, Edward and Patricia.) Pam was with the therapy department while the other three were nursing assistants. The evening shift had a special nurse, Dianne, who always spent some extra time every night before going off duty in order to ensure that June drank a glass of liquid and would not be thirsty at night. Pam on more then one occasion came in on her day off without pay just in order to make certain that June was properly fed. June and I have been so blessed with these people.
Note: There is great confusion in the minds of the public as to the meaning of the terms: "Alzheimer's" and "Dementia." While Alzheimer's is a disease, dementia is simply a group of symptoms that in turn are caused by an overlying disease or condition. Alzheimer's is the most frequent cause of dementia symptoms. Approx. 70-80% of all dementia is caused by Alzheimer's. If one were to say a person with dementia symptoms had Alzheimer's, one would be right 4 out of 5 times based on the statistics alone. Other diseases that cause dementia symptoms are Huntington's disease, Lewy body disease, Front temporal lobe, Parkinson's disease, strokes etc. Mayo clinic lists 16 diseases or conditions that cause Dementia symptoms of which a few are reversible. To further complicate matters, the dementia symptoms do not actually appear until the middle and later stages of the disease that will cause such symptoms. Confusion also exists in the medical profession. This is unfortunate as many death certificates are improperly completed with no mention of Alzheimer's disease although the individual may have had the disease diagnosed several years before death. This happened with my wife June, my mother Ellen and my best friend's wife Gloria. Three out of three of these death certificates were improperly completed. Perhaps that is the explanation for having an estimated 450,000 new cases of Alzheimer"s yearly in the US but only 80,000 deaths recorded. The unfortunate effect of this is that the understated deaths and inaccurate tabulation of Alzheimer's deaths also effect funding decisions. In the US the NIH (National Institute of Health) has no funding research grants for dementia. All funding is by the disease such as Alzheimer's, Lewy Body etc. In the UK the reverse appears to be the case! Not only did my wife June suffer with Alzheimer's for almost 15 years, my mother Ellen for 6 years and our friend Gloria for 15 years, but they are not even counted in the death toll!
(The average survival time for Alzheimer's is 8 years from time of diagnosis.)
The journal of June's last day and final hours can be seen at this link: "June's Last Day and Final Hours!"
It was almost exactly one year earlier on October 21st, 2007, that my mother Ellen F. (Nedland) Silbaugh also passed away as another victim of Alzheimer's disease.
Our Great Grandchildren (Erik's) Owen Oneal who was born on 5 August 2006 and Katrina Ann who was born on 18 January 2008 will never know their special Grandmother. On August 1st, 2012, June Marie another Great Grandchild was born to Erik and named after their special Grandmother June.
(Candid Photo of June and Stan by Jim Gehrz at the Benedictine on 10/31/2007)
This little wooden cross was June's in the year's 2007-2008. June was deep in the shadows of Alzheimer's and rarely opened her eyes or ever responded. 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 little wooden cross remains with June at Lakewood. The stolen necklace and gold cross has been replaced with another that was also a favorite and that too remains with June. 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 while we were attending an IABPA Conference in Tucson, AZ during October.
June first noticed a problem with her short term memory during 1997. Short term memory loss is a hallmark first symptom of Alzheimer's. In January of 1998, June was diagnosed by the University of Minnesota as being in the early stages of Alzheimer's. June's long journey into the shadows of this terrible disease ended after almost 12 years when she passed away on 23 October 2008 from Aspiration Pneumonia, a common complication of Alzheimer's. June's funeral notice as published in the Minneapolis Star in October 2008 can be seen on this website under the "In Memoriam" label - or simply Click on this link:
For the story of June’s favorite home at 6025 Gardena Lane and the poem I wrote about this home during a day of deep sadness, click on the below link: (This was June’s home for almost 40 years. It was constructed shortly after the previous home was severely damaged in a tornado. 6025 Gardena Lane was the first home the June participated in the selection and purchase of a lot on a small hill, helped with the design of the home and watched it being constructed. 6025 Gardena Lane had a special place in her heart.)