Where does the fear mongering stem from on this forum?

Hopefully, this Forum has taught all of us that each and every dementia/ALZ loved one is unique. So is every caregiver in terms of their family/financial/emotional situation. AND, that every poster of goodwill is hurting in one way or another. We are all muddling through this HORRIFIC experience that we wouldn't wish on our worst enemy. When I read through postings, the very first thing I feel is the pain. When we are in pain, we cope in very different ways. Some people will make a decision and want validation from others. Others need to feel that their way is the only right way, to assuage their own doubts. Still others are so angry about what is happening to their loved one that they need to blame others. Let's cut each other some slack. We are all grieving what is, and what is to come. I, for one, have appreciated simply knowing that others are doing their very best and are willing to share their experiences with me. Let's not turn on each other when we are the ones who really, truly understand what we are all going through.

In the world of customer service, the mantra is that an unhappy customer will tell nine people about their bad experience while a happy customer will usually tell one or two.

That’s pretty much what you’re seeing here with the fear mongering: People who had an unhappy experience that was likely not the norm but who nonetheless want to make sure absolutely everybody knows about it and thinks it is the norm. The same goes with those who reject proven medical science for conspiracy theories.

Anecdotal evidence is just that: anecdotes. People here share their experiences and it’s up to the rest of us to decide whether their stories seem to be indicative of a one-off experience, or general practices within nursing homes, for example. The best way to tell whether something is simply anecdotal for that one person versus general practices is to see how many other people chime in with similar stories -- or not.

Eventually it’s pretty easy to weed out the ones who are just here to cause trouble and get attention and those who are here to help.

I was going to say what Alva said in her last response.

To me, its not so much "misinformation" as being "misinformed".

I will use Hospice as an example. How many times on this forum do we hear that Hospice killed a LO. That they would not let them eat, gave them too much morphine. The problem I see here is that this person is either not involved in the constant care or Hospice is not giving family informed info. We all know feeding is stopped because the body is shutting down and feeding does more harm than good. I think its hard for some to get their head around that Hospice means the end. So, they are looking for any excuse to why the LO died. They died because whatever health problem they had caused their death. If not today, someday.

Now I am not saying there are not poorly run Hospice and and care facilities. You need to be an Advocate for your LO. Ask questions and question. You have a right to fire a Hospice and transfer to another care facility. My Mom was in LTC. I have recommended this place. Another person says they had a bad experience with the place.

Misinformation when it comes to what is going on in the world, no one really knows what is right or wrong. We have to hope that those who are in the trenches are doing the best they can with the information they have available at the time. I do what I feel I should for me and say nothing to those who feel their way is best for them. Only time will tell who is right.

NYDaughterInLaw, well said!!

To the OP:   if you feel this strongly about the forum, why are you still here?

Ah, Sigh.
It seems now we get down to one of the real issues you would want to write about. I am so glad you returned to write us a "for instance".
I don't think it is fear mongering to say what a difficult thing it is for care facilities to accept clients who are having a difficult time with acting out. It must be recognized by all, not just by old nurses like me, that a facility that houses many elders in memory care units, usually elders as roommates for one another, with access to others, has a difficult time with elders who are a danger to others physically or emotionally or cause fear for others. When this happens, any good facility attempts to work with families and with doctors to come up with medications that will help.
And yes, therein lies the problem of finding a drug or a drug cocktail that WORKS. That is, one that will calm the elder, sooth the elder so that they can be more content, BUT keeps the elder from going into a zombie-like state where they do not eat, do not interact, and are in danger of poor balance and falls. "Zombie-like" may be an unfortunate choice of wording, but I admit to having used it because it does paint a picture. A picture I have, unfortunately, been witness to. Gives people an idea of what is to be avoided.
It is a terrible question, what to do in these instances. A question without a good answer in some circumstances, despite a whole slough of medications available. It is hit or miss, wait and see, try and try again for the doctors, who aren't there to assess affects and side effects.
This is a RARE circumstance; Most of our elders suffering from dementia don't have these problems. But being on forum for any amount of time we will find out that it does happen, is a problem and is one that is difficult to address.
Discussing all of this honestly and openly on Forum does no one any harm. It isn't fear mongering; any of us already HAS fear on board when we try to act in the best interests of our elders who cannot act for themselves anymore. Accusations of facilities not caring, of their drugging patients into oblivion, etc, IS/would be harmful. I personally haven't seen that, but I could have missed it.
It is my feeling that most who work with elders love doing it; it is almost a vocation. The last thing they want is to participate in or witness abuse of an elder. But that's just my own experience as a nurse and as a person whose loved one was in a wonderful ALF.
I am glad we came to what is certainly an issue, if not THE issue for you. We can better discuss it, than when we use nebulous words like "fear-mongering". I think people who fear-monger on Forum are addressed pretty thoroughly, pretty quickly by those others on Forum who really care, who really want to help.

Sharing personal experiences is good, as is sharing facts. Sharing personal experiences/opinions but stating them as universal facts, is misleading and NOT helpful. For example, "My mother was not treated well and given too many sedatives at her facility, so this is something to watch out for," is factual and helpful. "Don't put your loved one in a facility because they will drug her into a stupor and neglect her," is not helpful because it is not a fact - it's not always true. It is true for that poster, yes, but that doesn't make it universally factual.

Hopefully most people can tell the difference and will be able to tell what is most helpful or not.

Have to be careful where you say that, some people might try to paint it as a "....[F]antasy based on your own thoughts - [not] factual or helpful information..."

Which is what I have been told when I shared my own first hand experience with over drugging when it comes to finding a suitable treatment for those with more complex, dangerous, or difficult behaviors.

I definitely do know of instances where over drugging happened to other people, but mostly it was temporary as their care team worked to find the optimal dosage or their body adjusted to new medication.

Maybe fear mongering was the wrong way of putting it, but I cannot be the only person that thinks it is problem when people come to this forum for advice and people try to use their negative experience with LTC as gospel.

Touting notices of LO being put into “zombie like states” as one example. Isn’t that an issue? Speaking for myself if I did pause for a time and try to take care of my LO because of scary things I have heard which only caused me further pain in the long run. I think with certain things we should be the negative to ourselves I guess when it comes to a global forum where no location is centralized.

Also this forum does have an issue with referring to people as trolls if they are not in agreement with the topic or poster.

Wow, I never thought of it as "fearmongering", just advice asked for and given, so one can see many points of view. I try not to see any opinion I don't agree with as fearmongering.. I just think about it and accept it or not.. kind of like the news,, or,, the real world!

It is my opinion that people on this forum speak from their experience, some positive, some negative. It's not fear mongering if someone expresses an opinion based on a personal experience. Every care facility, hospice experience, intervention, etc., has its pros and cons. It's all very subjective, some even hearsay. Some negative comments are often the result of not meeting someone's, the patient's, the caregiver's, expectations. It is up to the OP to decide what the best advice for their particular situation is.

From trolls such as yourself, Sig, who judge others' experiences as "misinformation" and "dangerous"? Stop trying to sew discord among a forum of caregivers that have helped countless people.

"I do agree with cwillie that it would be nice if the admins stepped in when a thread goes South, to either move it to discussions, or to stop comment."

I agree with CW and AlvaD there, certainly - this isn't censorship, this is upholding the forum rules of ettiquette that everybody agrees to on signing up to AgingCare. Different matter altogether.

It isn't information or opinion that I have any problem with at all.; the world is full of it, and we can make our own judgements about which we "believe" and which we "don't believe", or we can just watch the world spin and see how it all washes out with time.
What I do dislike is anger and vitriol against someone who doesn't believe what we believe. I think some few (very RARE) posters are into us doing the "Social Media Bout" here on Forum. Or into "changing hearts and minds"; I don't like to see a question by some innocent OP turned into 132 answers overnight of a few on Forum who got drawn into arguing with one another, trying to prove our own points, while the OP disappears under the waves.
Realistically I guess this IS social media, so I should just "leave it" as we say to the dogs. What is it the young kids say today? "It's all good"? (I could argue THAT one.
I think we are all adults. We're capable of making our own decisions for our own lives, of giving our own opinions to OPs who ask for them. Then let the OP sort out what is of value to him or her personally, and leave the rest.
We have a lot of regulars on Forum. I think we are all good people. I think we would all help one another if we were neighbors.
For the most part I don't think that the admins should intervene. If someone is expressing suicidal ideation they should, if someone is threatening others they should make a decision; or if someone is spreading blatant dangerous misinformation (as opposed to opinion), they have to look it over.
So, if a post is in some way dangerous in your opinion, click on the report button, and let the admins decide. I trust them to do so. And do this RARELY; they have a life!
As to differences of opinion?? We often don't even agree in our own families; why would be think we can agree on Forum? The OPs I think are for the most part very capable of separating the chaff from the wheat for their own specific cases. And so often we dispense really GOOD information, that can make a difference for people.
Perhaps sometimes we are baited because folks just love to watch a bar fight, and the latest season of Ozark is already gobbled up.
I guess we just have to make our own choice once again. Jump in, or leave it.
I do agree with cwillie that it would be nice if the admins stepped in when a thread goes South, to either move it to discussions, or to stop comment. My fear is that because we find out someone doesn't vote for OUR guy (or gal) we will decide their opinion doesn't count; NOT good. I guess the admins just figure it is up to us to decide whether or not to act like adults.

I agree that it never hurts to hear different perspectives as long as they are offered in a non argumentative way, but I do wish the mods would step in more decisively when threads go off the rails. There are however a few people who are negative nellies and seem to be little more than trolls.

Well, I think we should all say farewell now if "misinformation" is a cause for censorship. Because the web is full of it, literally and figuratively. Does a handful of people really cause you that much fear? Do you not see that it is countered with others opinions?

Personally, I want BOTH sides of a narrative with which to make my own personal decisions with. I think we are all, okay mostly all, reasoning adults and know that our caregiving experience makes us anything but objective on the subject.

I, also, know that people are going to do whatever they are going to do, no matter what anyone here says. Maybe, just maybe, they will ask better questions and take closer looks at what is happening because of the differing stances.

It is okay to disagree about anything, that's what being autonomous is about, personal function. It is up to every person on the planet to gather information and use it according to their own particular situation. If we can't do that, we are screwed as a people.

I, for one, don't want or need someone else spoon feeding me what THEY think I need to know. Don't we get enough of that in the media?

I say, give us all the viewpoints and personal experiences to help us not get blindsided while dealing with something that is completely foreign to many people when faced with our 1st senior caregiving experience. Knowledge is power, whether we agree or not.

I think everyone is entitled to their opinion.
I think they should be able to voice that opinion.
And along with that others should be able to respond with like or differing opinions. I do not think someone should be berated for their opinion.
What I do think is a shame is when someone after what must be a lot of soul searching and heart wrenching decision is to place their loved one in Memory Care or Skilled Nursing and to have people comment that they are going to die sooner, they will get poor care. Or for Hospice that Hospice will overdose and kill their loved one.
I also think that (and luckily most of these are removed) people should not push certain "methods, cures, concoctions" that will cure dementia, or any other malady that happens to be mentioned. (this does not include any supplements that might help other problems or side effects)

Barb, could you do the same for me? Tanx!

Absolutely agree, and also feel the need to note that there may be enough of us here who were caring for a Loved One during “normal times” and are now caring for a Loved One in COVID times, and at least where I am, the differences are profound and horrific.

That being so, some of the comments here are exaggerated one way or the other by the circumstances in which we are all presently living.

I definitely have my own set of biases, but fact, science, and human experiences have served me well so far, and I my responses come from there.

What would be helpful here is if everyone posting here was completely honest with their post. I believe most are but are you all? Then it would be considerate if the poster would come back and give updates or show some appreciation for those with helpful replies.

As an example my mother's experience in SN has not been totally positive but when I post about her it is an attempt to gain insight regarding her future. There is no way I could manage her care in my home. I would never suggest to someone to keep their parent etc. at home or beware!! I would not suggest either for no medication to be administered no matter what. I read countless posts where that is suggested.

After being on this site for a few years there are those whose opinions I have come to trust. I don't have many people in my life I can share all I have and continue to experience with my mother and her painfully slow decline. This site is a very helpful outlet for that.

If one wants this site to become one where moderators censor advice I feel there would be a great loss to the individuality of what AC is and brings to so many. It just would be nice if there could be overall compassion shown as most here are already experiencing heartache with dealing with our specific situations that often linger on and on complete with suffering included.

www.Bogleheads.org. About finances, investing and the like. It's a barrel of laughs...

but...I say they have "misinformation" ...even though they are talking from their own experiences
If their experiences don't affirm mine..it MUST be "misinformation".
If they are exposed to facts I don't like or that I have no access to...it must be "misinformation"
I love buzz words. they crack me up.

YES it should allow such posts.
differing viewpoints, even if the majority disagree...should be "allowed"
There is such a bubble mentality in this world now a days.

Ooh, which one is that Barb? Love the no religion policy in particular. PM me if you don't want to publicly say.

People have varying experiences with LTC facilities. Hospice, medications and the like.

Folks reporting negative experiences present what folks need to to watch out for in bad facilities. I'm sure there are places where over-medication happens, where aides are uncaring and where doctors are incompetent.

I think overall, enough of us call out "you're wrong" to let readers know that what they are seeing is not the universal truth.

Be aware, this forum is part of a commercial, revenue generating site. The other forum I participate in, which is volunteer-moderated, is much more strictly policed as to "no politics, no religion".

Fear mongering stems from strong opinions. And you know what's said about opinions. I personally like to listen to those who have first hand experience with the advice they impart vs. offering sheer opinion based on here say. "My sister's ex husband's best friend worked in a nursing home and said she saw the residents tied up in wheelchairs in the hallways" vs. "My mother has lived in a good skilled nursing facility for 3 years where the quality of care I've seen her receive is top notch." Yet the naysayers will insist those of us with first hand experience are blind & ignorant liars etc and have thrown our mothers out like garbage while they have self flagellated and bled themselves with leeches to provide 24/7 in home care the last 18 years, single handedly. Never ever having administered as much as a Tylenol when the parent was screaming bloody murder and biting their faces with advanced dementia.

Nobody wants censorship here because freedom of speech should be encouraged along with open discussion. Only when the ugly debate gets to name calling and personal attacks do the posts get reported and the admins sometimes step in to referee or stop further comments or delete comments entirely. I've seen that happen here quite often too.

I guess the moral of the story is to take what you like & ignore the rest. And beat a hasty retreat when the heartburn gets to be too much.

Oh well let's ban all of them for a start, then! Can't have that. I have completely changed my mind and fully agree with you. Moderators, when will you begin?

This is life, no such thing as one universal truth. Everyone has their own truth based off their own experiences it is not fear mongering to present your own truth. More perspectives allow for a more well informed take as to what families should do.

Censorship is necessary when misinformation is being spread. We have people telling others to be careful about LTC because their loved ones may become zombies, as an example.

Some posters are against the whole idea of hospice. Or managed versus in-home care. As long as blatant disinfo isn't being spread, as long as it's just people sharing their observations regarding meds, the med topic should be seen as a like topic for dialogue. Just my 2 cents.