The Law of Disappearing Friends
- Published on Wednesday, 28 May 2008 17:06
- Written by Stanton O. Berg
I saw a definition of Alzheimer's (Pratchett) that I thought was very applicable to the loss of friends in the course of this disease. He defined Alzheimer's as a:
"A disease, surrounded by shadows and small, largely unseen tragedies."
The loss of friends clearly is a tragedy and at the worst possible time.
The San Francisco Chronicle
The Chronicle ran a storydate lined 29 July 2007 about an Alzheimer's Association meeting the same month in Oakland. The article ran an overview of the stories of 100 people in the early stages of Alzheimer's. Two quotes from the article sets out the basis for this essay and my own experience with my wife who has Alzheimer's.
"Some say they've lost close friends who are scared of the disease and don't visit anymore."
"Sometimes their voices broke when they talked of friends disappearing...."
This was said to be the experience of the early stage victims of this disease. I can add that by the time they are in the late and last stages of the disease they will probably have lost most or all of their closest friends. June and I have experienced a similar loss of friends.
June and Our Experiences of the Loss of Friends
My wife June was diagnosed with Alzheimer's in January of 1998. However, June had short term memory problems in 1997 that concerned her enough to bring them to the attention of her doctor of Geriatirics at her normal annual physical examination in December 1997. This resulted in tests and the diagnosis of Alzheimer's in January 1998. Obviously her Alzheimer's dated to 1997. When I first wrote this essay, June was starting into the 12th year of this terrible disease. (The average life of the disease from diagnosis to termination is 8 years.) June was then in the late and very final stages of the disease. The following was our experiences with our friends during this time.
(Photo - below right - June- San Francisco - February of 1998 one month after her diagnosis but in the second year of the disease.)
The below comments were taken from an email sent to my children concerning a Saturday afternoon experience of mine and the resulting thoughts about my wife June and our other experiences with friends during June's 10 years + journey into Alzheimer's. The examples cover the loss of six (6) friends.
"I went to the Blue Grass jam session alone again today. As usual it is a time of musical enjoyment, laughs, fun and also sadness because I find myself thinking about Mom and how she loved the music, especially the violins.
I could not help thinking about our past friends and friendships. I have concluded that Mom was my only true friend. Most friends in this world are around for the laughs and the fun but start disappearing when the rowing gets tougher and harder. They are never around for the long haul.
(Friends 1 and 2.) What brought these thoughts up? Seeing the friend that arranged for Mom and I to attend these Blue Grass sessions, started me thinking about our past friends and friendships. (This friend was a mandolin player at the sessions.) Mom and I would go out with this friend and his wife for dinner every Saturday after the sessions. We would also meet them every week for "Senior Dining" (Lunch).Then after Mom got worse and finally had to leave home, it all gradually came to an end. At first they visited Mom and I in the nursing home. Such visits grew infrequent and finally stopped. I did not return to the Blue Grass sessions alone (3 years) until this year. I had stopped going because I had difficulty with the emotional involvement of going alone to what was a great joy for Mom.
When I went back for the first time a couple months ago, this friend seemed delighted to see me. After the session he wanted to call his wife and have us all get together for dinner like old times. Apparently his wife had other ideas. He called her and made the suggestion. Then the smile left his face and I heard him say "It was just a suggestion" or words to that effect. When he hung up he said that his wife already had made other plans. Now that I have gone back to the sessions several times, he has no longer made this suggestion and in fact he just tells me afterwards that he is in a hurry, must get going etc. or simply waves to me from across the room. It was obvious that his wife does/did not want to be reminded of Mom and her Alzheimer's.
(Friends 3 and 4.) We had the same sort of experience with two of our former very close friends in St. Paul. A former fellow employee and his wife.. We had frequently traveled together. Our travels together all started one time when Mom and I invited them to come with us on a forensic science conference that was being conducted during short cruise to Mexico. They enjoyed the trip and the conference group so much that they attended several other conferences with us from one end of the country to the other. We also had a standing date to meet every Saturday for breakfast at Baker's Square. When Mom started to show Alzheimer's problems they started having excuses for not coming to the breakfast. Finally I told them to let us know when they had a free time. They never called again to meet Mom and I for breakfast. After Mom left home I continued to meet him alone once a month every third Thursday for Lunch. Just the two of us. We did it for years. It was a set date. Soon he started forgetting the date although it was the same time every month. I would have to remind him a day or two ahead of time. Then he started having conflicts. The last time we were to be together a few months ago he did not show up for the luncheon at the time and date that he had changed and set. I ended up eating alone. I finally got the message. I decided that apparently he no longer wanted to get together. I wondered if he would call and explain his failure to show up and set another date. He never again contacted me. Apparently he did not want to hear about Mom and Alzheimer's any more than his wife did. I did not however bring up the subject unless he first asked about Mom.
(Friend 5.) Mom 'had a very best friend who would meet Mom for lunch and other get together's on a frequent basis. Mom had known her from High School days. We once provided transportation for this friend to one of the High School Reunions in Wisconsin, staying together at a Motel near the site. When Mom had to go into a Nursing Home, Mom never again saw her so called best friend. The friends excuse was that she did not like to see Mom that way. For the first year in the nursing home however, Mom could still visit and enjoy friends. It became apparent to me that when the "fun and games" were over, and visits were becoming uncomfortable, this friend was no longer available.
(Friend 6.) We had a similar experience with another very good friend of Mom's from our Church. This was also a friend of many years. Mom used to frequently take this friend to visit her father who was a resident at the very same nursing home (The Benedictine) that Mom is presently at. Now that Mom is a resident at this same nursing home, this so called friend no longer knows where it is at. She has never once visited Mom.
There are more examples but I would guess you get the point!
This sad series of events unfortunately even extends to family. One of Mom's siblings was a buddy and close friend that spent much time with Mom before Alzheimer's but who quickly dropped into the role of only an occasional visitor for Mom when Mom was no longer able to be the "fun and games" person of old.
Mom was the one who for years went to a nursing home every Wednesday evening to have dinner with the residents and be their friend. Now that Mom is in a Nursing Home, no one wants to be her friend anymore.
The world seems to excuse such conduct with the saying: - "Life goes on" or to rearrange it more bluntly: - "My life goes on but yours does not."
If you ever find a close friend who is there for you when the rowing is hardest, you had best value that friend like the rarest of gems – Certainly that is what they are.
Law of Disappearing Friends
I would suggest that one could define a law of human nature at work here. That law could be stated rather simply: As the timeline of the Alzheimer's disease progresses, the Alzheimer's victim's friends will diminish from several to none. Such a law could be named the "Law of Disappearing Friends." Every law has its exceptions, but I am sure that such exceptions would be the rare few.
I would suggest that my "Law of Disappearing Friends" is most appropriate to Alzheimer's disease and less appropriate to other diseases. In Alzheimer's disease the term of the disease is lengthy and always grows worse. I have seen it defined as: "A long, slow slide into oblivion, with no brakes." There has never been an Alzheimer's cure either medical or miracle. No one who has ever travelled into the shadows of Alzheimer's has ever returned. It would appear that friends, who can remain faithful when the pull together is short term, though intense, can survive with their friendships. However, when the friendship is faced with a long and an ever worsening pull of almost a decade or more, the friendship falters and soon falls away.
When the Alzheimer's victim also has a spouse and that spouse is a caregiver, then such a spouse would also suffer a similar loss or disappearance of close friends.
While many/most of the close friendships all tend to disappear, a few of the more casual friendships may remain. This seeming anomaly is probably inherent in the type of relationship. The casual friendship is more relaxed and lacks the uncomfortable feelings that are often or usually associated with an obligation, responsibility and perhaps guilt that are more common in the close friendships involving Alzheimer's. The victim's caregiver may meanwhile establish new friends from the ranks of other caregivers who may be faced with similar situations. I have personally experienced this in finding a new friend from our church whose wife has Alzheimer's and is in a different nursing home. We had been casual acquaintances in the past. We now have a standing monthly breakfast date and have become very good friends. Friends who come "on board" during the course of the disease may be friends that will stay. Such friends came into the relationship with their "eyes wide open" and are more likely to be aware of the implications and the expected progress of the disease. Even within this group there is a casualty rate.
There are probably no religious implications in all of this. Our friends have all been Christians. There is apparently however no differences between Catholic and Protestant friends. Both denominations appear to practice "equal opportunity" disappearing acts. (In the above examples, the first four (4) friends are Catholic and the last two (2) are Lutheran.) I will probably never know if the outcome would have been different if Muslim or Jewish friends were involved.
My initial feelings of anger over disappearing friends have been replaced by feelings of disappointment. I recognize that under similar circumstances I might well have reacted in a similar manner and responded to the baser instincts of human nature. On the other hand I am sure that June as her life has already demonstrated, would be one of the few rare exceptions and would always remain a true friend to all of her close friends.
If you are a friend who has discontinued your visits with an Alzheimer's friend because you do not know what to say or do under the circumstances....please review the suggestions contained in the Care Practices article found in this section. This article contains helpful hints for visitng such a friend. Please click on this link:
Alzheimer's Association Message Boards
On 3 April 2010, I posted a discussion topic on the Alzheimer's Association Message Boards Forum under the following title: "The Law of Disappearing Friends." I commented that when one becomes an Alzheimer's family one needs to brace oneself for the loss of many of one's old friends. I then referenced this article on June's website, with the address of the article.
I was somewhat surprised at the almost immedate response of the readers with several postings. Most of the postings reflected a similar painful experience. One reader however, posted the suggestion that it was better to "maintain a positive attitude rather than bracing ouselves for something bad. That tends to be a self fulfilling prophecy". There was no explanation as to how one might transfer such a positive attitude to the friends who are the ones in need of such an attitude and are the ones that are leaving.
The very next posting (April 4th, 2010) however very well summed it all up: Writing under the pen name of "Summerskies", made the following observations:
"Well, Stan, I would have to agree with you 100% and if you read on the many posts about such things that it happens in case after case after case. The church my Mother graciously served for several decades ended up MIA as did most of her friends and family. Sad but true and SHE was the most optimistic person I knew! Also a few of my friends definitely fell by the wayside. Casualties I guess."
"Caregiving is an inadequate term...it's really LOVE‐giving. You essentially need to be willing to give unconditional love to the person that's suffering from Alzheimer's." - Mark Shriver
While I have focused attention on the loss of personal friends, I have been reminded by several readers over the years that this is not just a friends problem but it extends to family members. In particular it also applies to siblings of both the victims of Alzheimer's as well as the caregivers to the victims.
These comments are true and I see it reflected in June's own family. I very briefly alluded to it in the above discussion. In particular I have found this to be true among June's siblings. A few of her siblings (not all) were "missing in action" or AWOL when most needed.
One of June's siblings was a frequent visitor in the pre and early Alzheimer's days...one who would spend a week or a few days at a time visiting in June's home. June enjoyed this sibling's company and they did many mutually enjoyable activities together. The visits were many and almost monthly. However, when Alzheimer's started taking control of June's life, the visits grew fewer in number and eventually stopped. Resumption was a few short visits when June was later in a nursing home.
Another of June's siblings was never a visitor in June's home once she had become a victim of Alzheimer's. This same sibling had both time and money to travel frequently to Las Vegas but could not manage the short trip needed to visit June at her home. This same sibling recently requested that I drop that person from my email list as the sibling no longer wanted to be reminded of June's Alzheimer's years as such reminders were always found in my published tributes to June.
Because my mother was also a victim of Alzheimer's during the same time period as June was a victim, I often wished I was not an only child in that I would have had others to share the caregiving responsibilities for my mother...however when I see the frustration of the many who were caregivers of a parent and the lack of support of by their siblings, perhaps I missed nothing by being an only child and was spared the frustrations of such lack of support!
I am still having trouble purging from my heart the bitterness and the anger that resulted from the memories of these incidents and others.
I never once heard the word "Stigma" used to describe Alzheimer's during the first 10 years of my caregiving for my mother Ellen or for my wife June...it was only when I later joined the international social media and groups of caregivers that I found it was a common term in the UK....it is a UK term that is rarely if ever used in the US in connection with the disease Alzheimer's or other dementia diseases.
The UK usage seems to be the suggestion that the victim of the disease Alzheimer’s is subject to being treated as one with a “Stigma”. Since the definition of the term suggests a mark of disgrace or a mark of shame, such usage has no logic to me...I have never found this to make any sense at all. I say it does not exist in the US. My daughter who has worked in the field and in nursing homes for 35 years agrees with me. There is no such common usage in the US!
Note: The new (2013) large encyclopedia type volume/book by Mayo Clinic on Alzheimer's Disease has a detailed index at the back of this fine treatis and the word "Stigma" does not appear!
I checked the definitions of “Stigma” in two dictionaries. (Dictionary.Com and Merriam-Webster Dictionary) These are the definitions I found:
(1.) A mark of disgrace or infamy; a stain or reproach, as on one's reputation…
(2.) .A mark of shame or discredit, “bore the stigma of cowardice.”
It would appear to me that the suggestion of “Stigma” being a part of the journey into Alzheimer’s is more the result of a lack of understanding of the term…This notion probably arises from the loss of friends and a misunderstanding of the cause of such loss. I am not sure where this connection ever came from originally. I have never in my life harbored such thoughts about a person with Alzheimer’s and I do not know anyone else that has either. In this regard I have experienced my mothers 6 years of Alzheimer’s. I have also experienced my wife’s 12 years. In addition I have visited an Alzheimer’s facility weekly for the past 5 years since my mother and wife passed as victims of the disease. I have yet to see any suggestion of “Stigma” related to the victims of this disease. I am more inclined to think that any person connecting “Stigma” and Alzheimer’s together does not really know or understand the definition of the term.
People stay away from a person with Alzheimer’s not because of any “Stigma” but rather because that person has changed and is no longer the fun or interesting person of old - or it may be simply because the person no longer feels comfortable with them and does not know how to act or react…and of course the old standby excuse of “emotionally unable to handle seeing the friend changed by the disease.”...behind every case of so called "stigma" lurks an uninformed or selfish person...
It is really no different than some other types of chronic disease conditions. The case of a severe stroke that causes paralysis of one side of the body and the loss of speech would be a good example. As with Alzheimer's, the stroke victim has a number of visitors in the beginning but as time marches on and the condition does not improve, the visits by friends start dropping off. Eventually such visits are rare. There is no stigma involved and no one would suggest it to be. So why do we want to call it a stigma when it is Alzheimer's. The friends simply do not know how to handle the visits when the victim cannot respond to conversation they become uncomfortable and stop coming.
The Facebook "Dementia Aware" group contained a posting under the date of 22 May 2014 by Dr. Richard Taylor, said to be a leading advocate for "Living Well with dementia" and a member of the Dementia Alliance International...He was quoted as saying: 'Stop using Stigma to raise money for us." and "The use of Stigmas to raise awareness must stop right now."...I would add an AMEN to that but unfortunately it will not stop...too many people seem to have a vested interest in this improperly used term...
University of Iowa - A recent study highlights the importance of frequent visits by friends and family of Alzheimer's residents. It reinforces the importance of attending to the emotional needs of people with Alzheimer's.
A news release of 15 April 2010 reads: "Memory Loss Patients Reap Emotional Benefits of Visits by Loved Ones Even Though They Will Forget." Here is clear evidence showing that the reasons for treating Alzheimer's patients with respect and dignity go beyond simple human morals.
The new University of Iowa study offers some good news for caregivers and loved ones of individuals with Alzheimer's disease. "Patients might forget a joke or a meaningful conversation - but even so, the warm feelings associated with the experience can stick around and boost their mood"..."A simple visit or phone call from family members might have a lingering positive influence on patients happiness even though the patient may quickly forget the visit or phone call...On the other hand, routine neglect from staff at nursing homes may leave the patient feeling sad, frustrated and lonely even though the patient can't remember why."
The study is published in the Proceedings of the National Academy of Sciences. Justin Feinstein, the lead study author conducted the study with UI neuroscience faculty members Daniel Tranel, PhD., UI professor of neurology and psychology and Melissa Duff, Ph D., UI assistant professor of communication sciences and disorders.
June battled Alzheimer's for almost 11 years when God took her home on 23 October 2008. 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 Click on: