Tru here. Been hesitant to blog on the issue of term “suffering”; don’t want to increase tension within the community of persons with dementia symptoms, or even worse, decrease effectiveness of efforts on stigma. And yet each of us SHOULD be allowed to describe our experiences, and describe them without fear of reprisal for the sake of political-correctness.
To “suffer” as transitive verb = used WITH object ((such as term “dementia”)): 1. to undergo, be subjected to, or endure (… anything unpleasant); 2. to undergo or experience (any action, process, or condition); 3. to tolerate or allow (per dictionary.com).
To “suffer” as intransitive verb = used without object: 1. to undergo or feel pain or distress; 2. to sustain injury, disadvantage, or loss; 3. to undergo a penalty; 4. to endure pain, disability, death, etc patiently or willingly (per dictionary.com).
“sufferer” (deverbal noun) is one who suffers. (may be for a moment or may be as a life-style / occupation)
Every being suffers; it is part and parcel of being human or animal. We all have injuries, conditions, disadvantages, and/or endure unpleasant sensations, both mentally and physically … and that is the basic definition of “suffer”. To pretend otherwise is just … pretend. From what I read it seems we wish to change the definition of “suffering” to exclude the condition of “dementia”. With current definition, I think the greater the person’s awareness of loss … then the greater their suffering. And to wish away awareness of loss … inevitably also wishes away appreciation of those things that you are in the process of losing, but still retain in part. Instead, I mindfully lean into grief in order to fully appreciate what remains.
Dementia is a gradual, slow loss process, and both of my grandmothers were aware of the process enough to be mentally tortured by grief. I cannot imagine anyone going thru this loss process without suffering, according to current dictionary definition. As shown above, by very definition, even the purely physical process of losing brain mass and loss of abilities, without any attendant mental or physical pain, is currently part of definition for term “suffer”. So the attempt seems to be a blatant attempt to change definition of term, “suffer”.
I have talked to a few other PWD (Persons With Dementia) who feel that term “suffering” is very descriptive of their own current dementia experience, and we have been told not to describe our experiences in that way … but in order to counteract stigma we should instead throw our dementia symptoms into a positive perspective as much as possible. We should not truly distort our experience, … but only telling one side of an experience becomes a distortion.
I think it is important to show multiple aspects of dementia symptoms. Showing ONLY the Success Stories with positive coping tools that might still work for a while … is just as untruthful as showing ONLY the “suffering” of dementia symptoms. Neither, without the larger perspective of the other, is being real; not being “truthful”. Without complete perspective there is imbalance in the tightrope of “truth”.
I don’t know how many PWD gathered to make the decision that term “suffer” should be eliminated from use with regard to the dementia experience. (So can people still “suffer” from physical injuries, conditions of cancer, arthritis, and other conditions? And then, on the other side of the coin, they expect dementia to be perceived with enough severity to validate legalizing end-of-life desires? Dementia symptoms cannot simultaneously be only trivial discomfort … and reason to facilitate termination of life!) I don’t know when decision was made, and how it was taken to represent opinion of all PWD for all future, but I have not addressed the issue until now, because I wanted to avoid additional friction. I just think this particular effort is bluntly trying to change the definition of term “suffer”. To pretend otherwise is just …. pretend.
… * … * …
I think the original idea was that the ONLY person who has the right to generalize the dementia experience as “suffering”, and the person as a “sufferer” … is the person who is themselves experiencing dementia symptoms; that no one who is not experiencing those symptoms themselves has the right to characterize them as “suffering” BECAUSE there are definite commonalities, but each person has different symptoms and experiences those symptoms differently.
(But, unless we deny physical brain changes shown by MRI and other various scans at point of death, I think this is still attempting to change the definition of “suffer”; the loss of brain mass and development of dys-Abilities in itself is “sustaining injury” and “enduring disability”, which are included in dictionary definition of “suffer”. So even without any other effects like psychological grief, the dementia experience will constitute “suffering” according to current dictionary definition.)
Unfortunately, once people get this instruction to not characterize the dementia experience as “suffering”, many many people believe that it means, obviously the inverse is also true; persons with dementia must NOT be suffering … and the term should be eliminated from vocabulary for ALL people — including the person with dementia (PWD) who feels he/she is “suffering”. … And in fact in the past few months I have been encountering people who think the dementia experience is really a minor thing.
These people believe that since there is no “suffering”, the major trauma is from the attitudes of people who do not have dementia toward PWD — which can be solved with education and then everything will be fine. So what is there for folks to be upset over? The attitude is to calm down and get a larger perspective where you can realize (or pretend?) that you are not really suffering.
… * … * …
Instead of changing the definition for term “suffering”, what is happening is that the dementia experience is being trivialized with the notion that there is no “suffering” in the dementia experience.
… * … * …
Wall Street Journal of November 30, 2015 said that American Psychiatric Association has replaced “dementia” with the broader, more accurate and less pejorative term “neurocognitive disorder” in the latest diagnostic manual. Another doctor also implied that the term “dementia” is becoming a politically-incorrect term in some facilities within the USA, and the term “cognitive impairment” is the suggested alternative in her facility. (see notes at bottom of page for references). My only current diagnosis is “mild” cognitive impairment, but most possibilities of alternate reasons for my dementia symptoms have been eliminated, and since I already have several symptoms for it, Lewy Body Dementia is the primary suspected culprit, along with some vascular results on my MRI. Without a “dementia” diagnosis I have no right to a voice in the issue of whether “suffer” is an appropriate term with regard to those who have a “dementia” diagnosis. But I can say that personally:
- I am suffering (feeling distress, disadvantage or loss) when symptoms prevent sleep. When my average night sleep is three hours and the cells of my brain and remainder of body are not able to renew and rejuvenate; running on an empty tank creates many mental and psychological complications. *
- I am suffering (feeling distress, disadvantage or loss) when I can no longer rely on what I see, smell, hear, and taste as being in any way associated with reality; when I must find another person to verify truth of my own experiences. They say “seeing is believing” but I can no longer trust ME; I must seek out and then accept the word of another person when they say that I am not really hearing music, seeing insects, or smelling fire. **
- I am suffering (feeling distress, disadvantage or loss) when I must request names of my only two grandchildren, during their weekly visits. ***
- I am suffering (feeling distress, disadvantage or loss) when I wake up in bed and do not recognize the stranger in the bed beside me, just as my grandmother was suffering when she pled in tears, “Sister, I beg you not to leave me alone all night with this stranger — at least introduce me to this man” (who was her husband). ****
… But I have been admonished by more than one person; told that it is inappropriate for me to use the term “suffering” in connection with my dementia symptoms. These persons have never experienced anything beyond age-related memory loss and, believing there is no “suffering” involved, they consider dementia symptoms only a minor complication in life. They are offended. So I rarely speak of it. Mostly I acquiesce to the current, politically-correct rules; so I do not speak of my experiences as “suffering” and I try to remember not to say the word “patient” unless I am speaking about something that happened in the medical office. But truly, I am not able to remember all the new rules surrounding use of terms, so I need to just try to remember not to use the terms at all; more restrictions to add to already difficult sentence composition. (You may note the number of hours required for me to compose each blog entry.)
My husband notes: “To prohibit a person from using their own terms to describe themselves is in fact forcing them to deny their SELF.”
… so I decided I would discuss it after all, because this is important. It is crucial that we have the right to describe our feelings and symptoms as clearly as possible, for as long as we retain the ability to attempt communication. Describing our daily experiences is one of the most significant contributions we have left to make. How can you (as a person NOT experiencing dementia symptoms) understand what would be YOUR best course of actions in a relationship, if you do not hear and understand what the symptoms feel like? Don’t admonish me for describing the “suffering” of my symptoms. Don’t admonish me for describing myself as a “patient” within the context of Lyme issues, or Fibromyalgia, or my dementia symptoms … or even my dental symptoms. Those actions only intensify my feelings of hopelessness for continued productive communication. I feel like giving up and not even trying.
It seems like we already have enough problems communicating, so adherence to politically-correct terms needs to be ignored in the greater interest of communication despite advancing symptoms. More restrictions of terminology create even greater confusion and even greater failure to communicate because we are already having word-finding problems before added constraints … and we are supposed to remember the NEW rules before we compose a sentence ?? (( sigh )) — so why even try.
If you wish to maximize communication, then stop putting greater restraints on person with dementia symptoms … by correcting their choice of terminology.
… * … * …
This became Part 1 of several installments for “suffering” topic.
Part 2 is at https://truthfulkindness.com/2015/12/03/dementia-suffering-terminology-part-2/ .
- * Able to sleep well this month, but like most of my LBD symptoms, my ability to sleep highly fluctuates.
- ** Current hallucination most troubling is smell of dog poop — everywhere, and random timing.
- *** Newest symptom is not remembering names of grandsons.
- **** Now mostly in habit of NOT looking around when I get out of bed during night or early morning, because I will not recognize my spouse.
https://www.youtube.com/watch?v=QQNVwWM3u_8 has Doctor statement re terms “dementia” and “cognitive impairment” in her facility; and the Wall Street article about term “dementia” being replaced by “neurocognitive disorder” is at http://blogs.wsj.com/experts/2015/11/30/its-time-to-change-the-way-we-talk-about-aging/;
PWD Norrms wrote at http://tdaa.co.uk/suffering-or-living-with-dementia-you-decide-plz-rt/;
PWD Paul Hitchmough at http://www.onourradar.org/dementia/2015/08/19/people-cant-seem-to-say-what-they-think;
Focus on Essential Priorities at https://truthfulkindness.com/2015/02/24/dementia-change-priority-pathways/
PS: I am way behind on newsletter and really busy this month so will read blog comments, but probably NOT respond to comments.
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