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how to bring boards back to Life
Posted: Wednesday, February 17, 2016 11:45 AM
Joined: 9/12/2013
Posts: 3608

In order to get back to our lives and what helps and what doesn't can some one discuss the issues in online forums and message boards with personality clashes?

The anonymous nature adds some fuel  to the heat of discussions I imagine. I read comment sections online a lot and did learn that people are just making quips and one-ups-manship stuff so I no longer have physical reaction or outrage over anything people write.

Learned to just ignore and move on. We are not required to respond to someone.

we do not live with each other, and friendships form all over the internet, not every body likes everybody else. we don't have to so that's lucky.

Maybe when someone goes off we could do something other than ban them. But what?

As we make some posts in states of despair, outrage, feel offended, disliked, put down ... can we accept this stuff is kind of part of internet boards and not take it so seriously personal?

Open to any and all suggestions. Not wanting to post here as it becomes too emotionally off topic and more about personalities.

Must say Bill wrote some stuff that was deleted maybe in a post i started and I wanted to reread his stuff because it was so perfect. a musician speaks about fears and disappointments in such a clear way. Brilliant, deep, helpful. Gone!

well, I do have some ideas I want to share but not today. still feels like everyone was doing a fire drill. we need to get back to the newly diagnosed and support those who are further down the road.

every story is valuable. what should we do to put out fires in ourselves and on boards?

Posted: Wednesday, February 17, 2016 11:58 AM
Joined: 12/2/2015
Posts: 1018

alz+, I didn't know something I had written had been banned. Oh, well, I'll survive if it did, and I hope I offended nobody. More importantly, your post hits the point quite well, so I didn't want it to go unnoticed. Bill.
Mimi S.
Posted: Wednesday, February 17, 2016 12:05 PM
Joined: 11/29/2011
Posts: 7027

My thoughts:

Folks on these Boards both Caregivers and PWD are fragile. It is not easy to shrug off  bullying and personal put downs  I am saddened when I read these even when not aimed at me 

I fail to see how these benefit anyone other than the writer. 

They do not encourage fruiful discussion. In my opinion the result is hurt feelings and folks leaving. 

Even as I write this feelings of depression are overwhelming my body.

Posted: Wednesday, February 17, 2016 1:47 PM
Joined: 9/12/2013
Posts: 3608

Bill, i think (?) it was an exchange we had about  missing out on important things, angry outbursts, etc I can't remember what I had as a topic, or if it was me.

No one deleted your post in particular, just the whole topic was removed, I do not even recall reason.


Mimi - I hear you. Let's also acknowledge that many of us are very attached to each other! even though we never meet in person, like you said, just reading that Iris is feeling low makes you sad. The heightened empathy many of us have might be called high sensitivity. These friendships are real.

 Iris was the one stable person in my life when I joined. Her calm self assured advice saved me from a depression that could have been my end.  When Iris went on vacation I had to calm myself while watching news for any war or plague in the countries she was visiting!    


The aggressive passionate demanding posts do not benefit everyone, yet some may get something valuable out of those same posts. That's one level.


We can agree on this much  -

No One is expected to relate to or like Everyone on message boards, we will have favorites, and there will be people who creep us out. Human nature.

If a person is threatening another, suggesting violence or self harm, raging or ranting - should we care if they are possibly ill, had a stroke, blood sugar is off, or they are overwhelmed by poverty, pain, desperation, fear, anxiety - should some one be available to reach out to them rather than just deleting their words and locking the door behind them?

Because in my own life I have raged, insulted and SOME ONE REACHED OUT TO ME and helped me, while others cut me off. So I tend toward the making an effort to contact the person with dementia to find out if they need help - in private reach out and ask what's going on? how can I help you?

It makes me uncomfortable to have an unknown person remove my words, but I accept they have the right to do that. We have to expect us to police ourselves in responding to some extent. I think we were trying to do that and hope we try again some day if some one else goes ballistic. 

Somebody must know how to handle message board personality clashes. Hope they share their wisdom.


Michael Ellenbogen
Posted: Wednesday, February 17, 2016 2:54 PM
Joined: 11/30/2011
Posts: 4492

I agree with all you said ALZ+. If SUN returns I have already volunteered to be a person to look out for her. She does need help and we should all be willing to do our part just as we would like he help if we were in that position. While I know I am controversial many times I hope you folks don’t think I am part of the problem. If you do please let me know.  That is not open to CG.

Michael Ellenbogen
Posted: Wednesday, February 17, 2016 3:42 PM
Joined: 11/30/2011
Posts: 4492

Are you folks aware of the quite room for those with dementia. Would you like to see that happen with this section or to create a new section with that in mind?


Posted: Wednesday, February 17, 2016 5:33 PM
Joined: 8/17/2015
Posts: 86

Michael Ellenbogen wrote:

I agree with all you said ALZ+. If SUN returns I have already volunteered to be a person to look out for her. She does need help and we should all be willing to do our part just as we would like he help if we were in that position. While I know I am controversial many times I hope you folks don’t think I am part of the problem. If you do please let me know.  That is not open to CG.


I also plan to be an advocate and help those in need, and if I see someone attacked I will jump in to diffuse it! People fighting this disease need to be safe in their own association! I've had no problem getting the support I need here, and many other places, and I am disheartened when I see pwd not sharing the same kind of support that myself and many other care partners get.

I do hope sun comes back as her presence is missed. She offered me such insight and really helped me through some tough times. 

Posted: Wednesday, February 17, 2016 6:36 PM
Joined: 9/12/2013
Posts: 3608

Michael Ellenbogen wrote:

Are you folks aware of the quite room for those with dementia. Would you like to see that happen with this section or to create a new section with that in mind? 



what is the room? I am interested.
 also, what a wonderful thing to do Michael, to volunteer yourself to reach out to a person in private. you are always way ahead of stuff. 
people have messaged me, and vice versa, maybe doing this but we thought we were just taking normal human concern for another person suffering.

maybe just knowing this will help people from going berserk or getting mean.
when I have gone berserk and my daughter reaches into my heart and calms me down so fast it feels like being released from hell into heaven.

Michael Ellenbogen
Posted: Wednesday, February 17, 2016 7:25 PM
Joined: 11/30/2011
Posts: 4492

When many dementia organizations hold an event they have what is called the quite room. That is a place for those with dementia to go to this room where it is peaceful and quiet and away from all the noise. Trust me one like me really needs it when I go to those things. They even have snacks and goodies in them. Thank good there is some advantage to AD.  The only people who go to that room is the folks with dementia but they are allowed to be accompanied by their care giver. It is a place to be able to wind down and it really does work. I must give credit to AA for that.


So I original though that is why our tread was original created but I was never able to figure that out as no one seem to know why it was created. So I was thinking that we could have the same thing online which only those with dementia can go to and they are the only ones that can pos. The software would insure that. I believe that would help in some of the conflicts we have. That is my thought what are yours? And to be honest with you I would hate to create a new category, I would rather convert one of the ones we already have. They CG would still be able to read what we have but not add to our threads. 
Posted: Thursday, February 18, 2016 6:27 AM
Joined: 9/12/2013
Posts: 3608

Michael- yes on quiet room.

an online quiet room.

before I understood you meant as a place on boards I looked up "dementia quiet room" and found a pdf I think I emailed to you? which showed these FANTASTIC quiet rooms, i mean they looked to me like ... way too much but the general idea holy wah!

in my house Keeper put together my upstairs room 2 weeks ago. In my quiet LEAVE ME ALONE room I have a window , memory foam bed, new pink sheets, my favorite pillows and blankets. bed is now low so dog can easily climb up.

My desk is gone (every day I missed writing and having it out of here helped not think of it)

and he will bring me a  chair that rocks and swivels from my Mom in case my back recovers enough for me to sit up  again.

I saw a modern lava lamp at store last week and did not get it, but lava lamps were used int he fancy quiet rooms, and led light strings. they mentioned covering windows to filter light - I have sheet tacked over window downstairs, bright daylight roasts my eyes, and what I call BRIGHT LIGHT is almost any.

Online quiet room, yes. Great idea. and at home a good idea. thanks for being so patient with me as I figure out what people mean.

Posted: Thursday, February 18, 2016 8:33 AM
Joined: 5/20/2014
Posts: 4408

I wish there were quiet rooms everywhere for us. Good ideas! Michael you are so thoughtful and kind and I admire that rebellious side of you. Rebellious is not bad as long as it's expressed with respect and you're always respectful. 

 ((((Mimi))) I'm feeling that depression with you. Feeling more vulnerable than I've ever felt and the heightened sensitivity of emotions that I can feel on any given day catches me off guard sometimes. 

I found a quiet place to go on the board in the midst of chaos here in seeking solace. There are little nooks and crannies where you can sneak into and fall softly. Not have your words minced and slashed and spit back at you. I haven't visited the one place yet but read some of the posts and it is a totally drama free zone. That is what a quiet room would look like for me.

I've always had this trigger with younger woman being provocative and getting in my face (so to speak). I was raised to respect my elders and wisers. I appreciate the wisdom and experience of surviving many years that comes with age. Consequently, some of the personality differences for me on the board have been cultural and generational. Differences need to be expressed with respect and they were not. 

The board seemed to be stuck and some just added fuel to the fire. I could have added fuel to the fire also. I'm just at much at fault as the next person. There was no moving forward. Moving on. Okay so we disagree, so what? People disagree all the time. Principles have to come before personalities. The principles are what we are here for; help, to be able to relate to one another, empathy, support, advice, etc.

If, or and when I tip over on the board I want to be pulled up by my friend's and peers here. I have been pulled up before. Once or twice ever so gently that it took me a few days to figure out I was pulled up. I respect many here and would not mind being pulled up by them about something I may need to reconsider. Take me aside and talk to me. But at the same time protect me and keep me from being attacked by others who will jump at an opportunity to pounce.

I ask the moderators to let us PWD work this out to trust that we can. Please consider all the good that we have brought to the board. Allow us to work out our feelings with each other and hopefully to come up with some solutions. You diminish us when you do not allow that. We need you to trust and have some faith in us.

Some of us are struggling with the impact of all that has taken place on the board recently. We need to work through this. I don't mean choosing sides but by putting principles over personalities. 

Love to all