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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Good morning not sure if you will relieve this but I love and identify with your blogs
I like the way you looked intensely at the word sufferer and broke it down I think I have been campaigning for people to see me and not my symptoms of dementia as old age and the old way of thinking
However I too am finding it hard to find words never mind what is the politically correct term now so am becoming reluctant / hesitant in responding at conferences in case I offend
I wonder if I should make a disclaimer at the start
Saying something like
Hello my name is Agnes I have dementia of the Alzheimer type I have difficulty in finding words if I use a less than politically correct term forgive me as I am not deliberately trying to hurt or be abusive just trying in my human way to communicate
Hugs and rainbows AGNES
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I think we can all agree that each of us, whether we have dementia or not, are free to refer to ourselves in any way we please. It’s when others choose our labels for us that it becomes more difficult. It would certainly be true to say that I have put on a bit of weight and don’t have as much hair as I did – but if someone else introduced me as chubby baldie Steve Milton I would be rightly miffed. Dementia Words Matter has been completely misrepresented for some reason as saying that the people behind it (which includes you of course) are trying to stop everyone using the word sufferer. Nothing could be further from the truth – the document and the call to action is aimed mainly at the media – NOT at people with dementia or carers. The whole idea is that people should be free to choose the way in which they are described – not have that thrust upon them by the blanket use of the phrases like “800,000 dementia sufferers”.
Thank you, Steve. I recognize that Words Matter project is not trying to say that Person With Dementia themselves should not use the referenced terms — but that has been the mis-understanding RESULT (not only for me but some of my other PWD friends who have been admonished for their terminology).
I also recognize that the project was not meant to say that the Person With Dementia does NOT suffer — but again that has been the overwhelming mis-understanding of result I have seen among both general public and Persons With Dementia. I am trying to say that these mis-understandings are becoming a problem. Thus I wrote Part 2 … and am working on a Part 3.
We have already made a few changes to the descriptors of the project to make it even clearer that it is NOT aimed at people with dementia and carers and to underline the basic principle that people with dementia are best placed to determine how they are defined.
The people with whom we work routinely use all sorts of words to describe themselves and their experience – including sufferer – and in my experience it is rare for people to admonish or challenge one another and I’m sorry if you have had that experience. I think it is fair to say though that at the start of any ‘movement’ there is a process of challenging the status-quo and passions run high, and some people take positions which are regarded as extreme by others. If they didn’t though, arguably change would take much much longer.
In the 1980’s I worked for a big charity for disabled people around the time the disabled peoples movement was getting started in the UK – and there was a very similar debate around language – in fact much more vociferous – and a similar critique and challenge to traditional models of care and caring and of the place of disabled people in society. We took a lot of flak, as an organisation FOR disabled people by the new organisation OF disabled people – and you might argue rightly so. It was tough though, especially when you felt you were doing your best. However without that turmoil it is unlikely we would have seen the enormous changes in the way we view disability between now and, say the 1960s.
We are witnessing the birth of the dementia ‘movement’ right now – and although I have never given birth – I am reliably informed that can be a little uncomfortable. But what a beautiful baby awaits.
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Thank you, my friend. I sent you email response.
I don’t think anyone is suggesting (or at least I hope that they are not) that individual people cannot say that they suffer, or are suffering, or characterize themselves that way. We don’t refer to people with cancer as “cancer suffers” even though just the act of being diagnosed with cancer entails some kind of suffering. Not referring to people with cancer as “cancer suffers” has NOT diminished in any way the public perception that people with cancer are suffering.
But, on the flip side, if a stranger walks up to me or greets me, as a “sufferer” – what does that make me? Should I see myself that way? Should I be trapped and diminished by that title given to me by others who don’t know me? Should the concept that I should inherently “suffer” ever be given to me? Should I be told, on diagnosis (by doctor or others) that I will “suffer”? And, if I am, *how* does that change how I see myself, my diagnosis, and my future? Is that *what* we want to hand people?
Also, if suffering is inherent in dementia, like it is in cancer…then who feels they have to “prove” they are suffering to others? If you are suffering, you are suffering…and it doesn’t matter what others think.
And, do we HAVE TO suffer? Who said that, and *why* did we ever believe them? Isn’t suffering just a matter of perspective? And in dementia, maybe some of us need other’s help to change our perspective? Maybe we are inherently too reliant on other’s perspectives…that we are a burden, that we are suffering, and sufferable, that we are the cause of everyone’s misery…shame on us for getting dementia…right??
I totally think suffering (aside from depression, or perspective), is the complete and total result of caregiver failure. If I am suffering in my final days, my caregivers aren’t doing it right. And OMG if they bring suffering to the holidays…because they cannot wait to grieve me…gag me with a spoon.
We are all, of course, entitled to our opinions. I don’t see characterizing us as “having dementia” in any way diminishes our experience of it. Whereas, to characterize us as suffering – alters, negatively, our experience and our caregivers sights at what is possible, and sort of locks us into that (very yukky, imo) destiny. Not a fate I want for myself.
Much Love, and thanks for all you do Tru.
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PS: I am way behind on newsletter and really busy this month so will read blog comments, but probably NOT respond to comments. — Tru
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Based on the dictionary definition of the word suffering, yes, I suffer. Like pain, suffering is a subjective continuum.
I find changing the language of words, nearly impossible for me, based on my PPA. I see the point but struggle to fully envelope it, only because language is mostly based on what I retrieve from my familiar memory.
It’s like when someone points out or speaks poorly of one of my family members or friends…..Only I am allowed to say those things!
I agree that given a diagnosis or living with the symptoms ( which are one in the same to me), does not mean that a set living style immediately follows. Each person and their loved ones will live and experience dementia in their own way. Yes, suffering will be a part of it. I, am living with a deteriorating brain and when I reach my personal suffering I may or may not be capable of telling of it. Keeping dialog open for acceptance and understanding is the only way, I believe, that the general public will truly understand what living with any diagnosis is truly about.
Thank you Tru, for opening this dialog and all you contribute.
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I am without a doubt SUFFERING every moment of ever day. Every day, there are a hundred things I screw up, can’t do anymore, can’t find, words I’ve lost, memories gone. Over and over again, every day, I have been living for 3 years in abject grief, and every time I do something wrong, I get another of those horrible jolts you get when someone dies, and you wake up the next morning, and for a split second you don’t realize what’s wrong. Then it hits you, and the grief overwhelms you yet again.
This is NOT a f***ing “journey.” It’s an excoriating, relentless road to hell with stops set at pissing my pants and sitting in it, and dying a humiliating, shame-filled death (soon, if I’m lucky.) That is simply the truth. I am not going to play Polyanna to make other people feel better. “Spiritual journey?” Bullshit. How spiritual is it to need someone else to wipe your ass?
I suspect these silly ass terms are invented by people who want to pretend that what is true is not true so they can keep their heads buried in the sand.
And keep in mind that someone who appears to others to be still functioning is not necessarily suffering less. It all depends on where one started. I started out with a Mensa IQ and now I am barely average. You think that isn’t suffering? Where would you be if you lost 1/3 of your IQ if you started out in the average range? Let’s see. 100 – 1/3 = 67. Yippee. Deficient. Not really trainable. Lower than 98% of the population. Who wouldn’t enjoy that “journey?”
And people like to comfort themselves that later on, the victims don’t know what condition they are in. More false self-comfort. Maybe the real victim knows exactly what is happening to him or her but is “locked in” and can’t communicate at all.
Journey!?!? Where the hell do they think we (or they) are going? Costa Rica?
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Croby, I am a nurse who has worked with people with this plague for fifteen years. Your statement blew off the top of my head. You have encapsulated every thing I have believed, practiced and taught others about what it must be like to experience the hell on earth of progressive dementia. If you might be willing to allow me to quote you in print, please contact me at firstname.lastname@example.org. Either way, your words inspire me to continue this work with even greater determination to make a difference. For that, I thank you.
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TY. Its helps just to feel understood for once. Please feel free to use my words.
On Wed, Dec 16, 2015 at 10:13 AM, Truthful Loving Kindness wrote:
> The Dementia Nurse (@TheDementiaRN) commented: “Croby, I am a nurse who > has worked with people with this plague for fifteen years. Your statement > blew off the top of my head. You have encapsulated every thing I have > believed, practiced and taught others about what it must be like to > experience the hell”
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Thank you for posting your reply Christine. I think feeling understood is crucial to our willingness for sharing effect of symptoms (with resultant better public awareness) and also our own well-being as a person. (( smile ))
Some words that are also in the dictionary, and are the “proper” (at least according to their definition) term…per your argument in this post…but for which we do NOT use, why, because they are offensive:
Retarded (when we refer to someone with a low IQ): http://dictionary.reference.com/browse/retarded?s=t
Bastard (in reference to children born out of wedlock): http://dictionary.reference.com/browse/bastard?s=t
Crazy (when referring to a mentally ill person): http://dictionary.reference.com/browse/crazy?s=t
Would you make the same argument that it is ok to use those terms, even after you become aware that some find them offensive?
Thanks for that blogpost – I love your writing – so clear and considered, and,well, kind.
I think you should use whatever word you like to describe your own experiences – anyone who tells you otherwise has no right to do so. …….and of course this is not what the Dementia Words Matter and the Call to Action is about. The underlying principle is that people with dementia have the right to decide for themselves how they are defined, and how their experience of dementia is defined.
Some people with dementia I know say that they ‘suffer’ from dementia, others say they do not. All recognise that they might feel differently tomorrow. 800,000 or people with dementia in the UK – 800,000 different experiences and different opinions.
One man with dementia – Brian Fuller speaking at Congress this year said that he was diagnosed with dementia but is suffering from depression – which I thought was really insightful – and certainly mirrors my fathers experience, even though his dementia was quite advanced when he died – his depression had a much more significant impact on who he WAS than his dementia.
You rightly point out that the original intention was NOT to limit the expression and right of people with dementia to use whatever language they like – but to stop the media and others who write and speak publicly about people with dementia – not to attach the label of ‘suffering’ to all people with dementia.
“The guide is intended for use by journalists, organisations and communications departments.” (Dementia Voices Website)
But even then – this does NOT mean that the media should pretend there is no pain, no suffering, simply that the constant use of phrases like ‘800,000 dementia sufferers’ not only tars everyone with the same brush but also makes suffering the automatic defining feature of people with dementia.
It is a shame that the Alzheimer’s Society did not make this clear in their recent posting of the word ‘suffering’ with a line through it – and in fairness it did look like they were suggesting that everyone should stop using the word. This is not the case.
In answer to your question about who was involved Tru – here’s a link to the video – it was 20 people with dementia including many you may know, or will have met- from the FIT group in Shipley – the EDUCATE group in Stockport – the SURF group in Liverpool – OPEN DOORS in Salford and others.
Again – and this is SO important – none of those people would want anyone to think they were trying to control what other people with dementia (or carers) can or should say – quite the opposite – its about putting control in the hands and voices of people with dementia to describe their own lives and experiences.
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