Undermining comments within this forum

Cynbar

I have struggled with this thread since it first appeared yesterday, and I think I finally have some clarity about my reaction. I recall some threads that have gotten particularly harsh responses, sometimes from myself. They have involved such issues as allowing a LO to drive, while admitting it's not safe, but saying they can't stop it because the LO will get mad. Another issue I have seen is granddaughters stuck with caring for a very difficult patient while the other relatives (including children) are too busy with their own lives. Hopefully, these threads have been enlightening for the OP as well as other readers. I know I myself have occasionally been in a spot when I couldn't see the forest for the trees, and needed a close friend or relative to shake me up (which I was grateful for later, maybe not in the moment). I do believe that almost everyone who posts here is generally trying to help ---- granted, I have been doubtful re a few. No poster should feel he/she needs to take all advice given. But isn't this a problem solving, advice giving forum in addition to a source of support? Are replies going forward to be limited to "Sending hugs" or the equivalent?

Michael Ellenbogen

Please delete as it is not about the person who needs help but you. Very nice folks here try to help but you apparently don’t want that.

CharGo

Wow

[Deleted User]

The user and all related content has been deleted.

ButterflyWings

Dear CharGo,

My dear late mother (aneurysm, no dementia) had many very cool sayings, but one of them that I recall the most is..."to each, his own". She would remind me not to judge others by my preferences and not to let others judge or decide for me, either.

I've learned on these boards, and in my own experience with a DH now mid stage 6 with AD, that every individual has their own path with this disease (and in life period). Which means, one person's solution won't fit everyone else. As you seem to be saying, if this is a support group, let's be supportive of folks' journey rather than try to dictate, assume, or judge their situation by our own. I could not agree with you more.  The decline of our PWD LOs is inevitable. But placement outside the home in MC is not. 

I will say, please give folks a chance as you want them to give you. The communication here, especially with all the emotions we all deal with, can sometimes be misconstrued or just not land exactly as one would want. I know this all is so very, very hard to deal with, as our loved ones are taken away by this terrible disease, but most here have only the best intentions. People here share what they have done/or would do, if in your position. We try to "take what we like, and leave the rest" as they say in many 12-step programs. Wishing you peace of mind. Our health, well-being and mood is important for our own survival. And it directly affects dementia sufferers who pick up stress or joy quite easily. Good luck to you and your mom.

M1

I was the other responder besides Marta on the first thread and I have been debating for two days now whether to respond further or to hold my tongue. I like to think that all are welcome on these boards and different viewpoints not  only tolerated but encouraged. I don't want anyone to feel driven away by anything said or written. Life is too short and we're all too busy.  

CharGo I am sorry if something I said irritated you. You were expressing a lot of frustration with your mom's behaviors and the conflict it was generating between the two of you. I stand by my statement that it sounds like the day is fast approaching when she is not safe to be alone-but whether that means placement, in-home help, or a live-in companion is not ours to say. Yes, her decline is inevitable, and that is upsetting; it feels like maybe there is a shoot the messenger dynamic here.  But the only criticism I have, though, is that it does not strike me as fair to delete the posts and then ask the rest of the forum to participate in a dispute without being able to judge for themselves.  I've not seen that happen before, and I don't know if that's something our forum moderators could address.

Anyway I wish you well as you try to take care of your mother and I hope you will stick around. I hope you find the solutions that work for you.

CharGo

Yeah I am done. All of you should be ashamed of your behavior today. You are not the good guys here. 

Also just for my own piece of mind.

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You all are a gang and you are mean. I don’t not need it, bye.  

dayn2nite2

CharGo wrote:

Yeah I am done. All of you should be ashamed of your behavior today. You are not the good guys here. 

Also just for my own piece of mind.

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You all are a gang and you are mean. I don’t not need it, bye.

Good Lord.  Mad because people don’t respond the way you want, then mad because people tried to explain themselves and again doesn’t meet your demands.  See ya.

Chris2337

Hi, please do not be upset over what one person said. I had a friend of my mom call me and tell me what I should be doing with mom. Smh, um dementia does NOT come with an instruction manual for us to follow, and she is not living with you. If your mom has ES there is no need to move her anywhere unless it is for her own safety.

Actually, my 85yr old mom probably still taught music at the university while she had ES. Yes she was late a few times and got lost driving, but she is fiercely independent and still is. She taught up to the age of 83.

Is is when the university told her they were not renewing her contract did she start the spiral downward. A deep depression took hold, and she has not been the same since. Her life's passion was taken away.

So if you have doctors in place and your mom is doing ok, keep her where she is. Every person's situation with ES, middle, and late is different. 

There are a lot of people who are good resources of information on here. Don't let one bad apple ruin it for you. I support you. Heck, keep you mom with you as long as you possibly can. You will know when it is time for the next phases that will come. And they will come. Sometimes more quickly that expected as was in my case.

Michael Ellenbogen

I had planned to apologize for my words but I am not sure I want to after seeing the comments made. Some time you need a wakeup call and that is what it was. There are all kind of people and all kinds of personalities.  Some sugar coat things while others are very blunt. I am one who tells it like it is as I want no misunderstanding. I have seen to many times when one sugar coats what they say its taken the wrong way. My Daughter is your age and I would have told her the same thing. If you are going to make it in this would you need to grow a thicker skin. Its important in life to hear the bad with the good weather you like it or not so that way you can make the best decision. People here are not expert social workers but they do give the best advice they know at the time the do it. It may not be what you want to here or what is right but they are trying to do the best to help you. Keep an open mind and you will be successful. If you don’t you will lose out on many good things in life if you only want to her things your way of thinking.

Cynbar

I hope we never get to the point where the only acceptable response to any post is "Sending hugs." Almost everyone here, with very few exceptions, is only trying to help.

MrsAnnabelLee

Seems like you know as much about all of our ages as you do healthy communication. Be blessed!

jfkoc

Sadly all attempts to help have been not only refused but seen as continued hurt. The thread will undoubtedly be removed but it has been recorded for future reference if needed.

ladyzetta

I do hope this thread gets removed. I did report it and hopefully others have as well. CharGo, you said Good Bye so Good Bye. I do hope you also report this thread !!! 

We will still be here if you need help but remember you may not always hear it the way you want.  This thread is going nowhere it is a Waste of Time!!!   

King Boo

Moderators will address gross violations of the user agreement to the discussion boards, they do not address hurt feelings. 

  Everyone who responded to the OP was trying to help. There was nothing that was a board violation.   Message boards are not useful for everyone.   Or, as the Moderators themselves state in the terms and conditions:

"ALZConnected invites and encourages a healthy exchange of opinions. If you disagree with a participant’s post or opinion and wish to challenge it, do so with respect. The real objective of the ALZConnected community is to promote discussion and understanding, not to convince others your opinion is “right”. Derogatory messages will not be tolerated. Name calling, insults, personal attacks and discriminatory comments are not appropriate and will not be tolerated. Posts containing any such content will be reported and will be subject to edits, deletions and/or suspension of accounts privilege. 2. Be supportive ALZConnected is very active and its size is one of its strengths. As you post and read messages, please be aware that electronic messages, often written quickly, are easily misconstrued. Given the challenges of online communication, it is usually helpful to assume a positive intent"

  

King Boo

Most threads are instructional and are seldom removed in their entirety by the Moderators.  

Everyone who responded to the OP was trying to help, or at least explain why the expectations were not consistent with how a message board works, or provided tips to streamline things a bit to help.

Once upon a time, there was an extensive PV program with training about inappropriate responses.  No one who responded to the OP breached terms of participation  Nastiness, and name calling, and ageism is not permitted.

As they themselves have written:

ALZConnected invites and encourages a healthy exchange of opinions. If you disagree with a participant’s post or opinion and wish to challenge it, do so with respect. The real objective of the ALZConnected community is to promote discussion and understanding. . . . Derogatory messages will not be tolerated. Name calling, insults, personal attacks and discriminatory comments are not appropriate and will not be tolerated. Posts containing any such content will be reported and will be subject to edits, deletions and/or suspension of accounts privilege. 2. Be supportive ALZConnected is very active and its size is one of its strengths. As you post and read messages, please be aware that electronic messages, often written quickly, are easily misconstrued. Given the challenges of online communication, it is usually helpful to assume a positive intent. Please try to keep in mind that the main purpose of this online community is to provide support and education to those affected by Alzheimer’s disease

Michael Ellenbogen

There is no reason to delete as it is good for others to learn from it. We all have good days and bad days and I would like to chalk it up to a bad day. That is where we all learn from.

Merry42

Isn't there an administrator here who monitors these discussions to keep them positive???  And accurate advice?  We aren't doctors and should be careful with our suggestions.

Iris L.

Merry42 wrote:

 And accurate advice?  We aren't doctors and should be careful with our suggestions.

I'm glad you brought this up.  People don't generally make a distinction between advice and suggestions, but there is an important distinction.  Advice is specific for a person based on a professional's education and experience and knowledge of that person's individual situation.  Suggestions are what is given here on the message board, based on the poster's experiences.  These are actually suggestions even though they may be called advice.  It's up to each OP to receive or not receive the suggestion--to take it or leave it.  Even if we don't like the response, I think it is polite to thank posters for making an effort and taking the time to respond.  No one has to respond.  

Dealing with the dementias is one of the most difficult undertakings we will ever face.  None of us knew what to do with dementia in our own lives--even those of us in the health professions.  I think it's really a miracle that these boards exist and that strangers are willing to help other soujourners.  Every day I am grateful for the members here.  Please members, don't become inhibited from responding!  

BTW, professionals don't have much advice to give anyway.  That's why these boards are so necessary.  

And no, moderators do not moderate.  They get involved if there are complaints.

Iris

King Boo

Merry42, it's very important to know these are member driven message boards that are left to self govern except in all but the most agregious breaches of participation agreement.  In this thread, the only post that even approached the need for the moderator was the rather awful sendoff from the OP to the many people who had responded to try and help or illuminate.  

There are no physicians, nurses, social workers, psychologists, geriatric psychiatrists providing expert advice unless they happen to be a discussion board member themselves because of dementia in their lives.

Anecdotal advice and sharing from other board members helped guide many out of a pickle with an overwhelming situation.    We gotta sift through......... and then go hire that CELA, MD, etc we are guided to.

Rescue mom

Just want to say that when I come here with a question or looking for insight or suggestions or input etc etc., I hope to get answers without people worrying if they’re being supportive enough. I like straightforward and to the point. I’m ISO information—as Michael said, the bad and the good—and being always tired and busy, short and straightforward helps. But any and all responses, even offers of virtual hugs and flowers, are  gratefully accepted  when I offer a response, it’s with the hope my experience might help someone, as so many have helped me by sharing their experiences. Not all are helpful to everyone, if not for me, I just  keep reading.

All information is good, IMO. What’s bad for me, may well be good for somebody else.  Some responses may suit me better,  but the more data I have to decide from, the better, in my view. I learned a long time ago that when you put something on an open internet board, you’re liable to get back things you didn’t expect. For me that’s ok, I can figure out what to use or ignore. (Of course the rules about personal attacks and protected classes still apply). I’ve already spent waayyy too much time, though, trying to figure out what’s here that would be “reported”? 

Michael Ellenbogen

Now I will apologize for what I said earlier. I am more then happy to speak with you if I could help in any way.

mrsfnulnu

As "ButterflyWings" said, we have to assume we all come here with the same good intentions.  It's worth recognizing, too, that many of us come to this forum most or only when we are in desperate need of advice or desperate need of commiseration.  Everyone who comes to this forum does so because they see value in getting multiple points of view; otherwise, we'd only be seeking input from one person.  We are bound to get some we don't like, some we misunderstand, and some we think is flat out wrong.  Mixed in is advice we like, we understand, and we think is "right" enough that we will implement it.  It's a good rule of thumb in life: listen to others, consider that they might be seeing things from a different perspective, then set out to figure out whether that perspective or our existing perspective helps us grow or move forward.  Cheers to all of us doing our level best to navigate these troubled waters!

manuzito

When my DH and my mother were diagnosed with dementia at the same time I thought that it was imperative for me to seek all the help that I could get.

Finding this forum was for me a ‘life saver’.  I learned a lot from the information and experiences of people dealing with this awful illness.  

Like another poster said, this is not a forum of doctors.  Suggestions and information I usually take it or leave it.  I found that whatever I decided to take from this forum worked for my DH and mother.  I’m extremely grateful to all the posters that take their time to share their experiences.