RSS Feed Print
I just don’t get it.
Keep It 100
Posted: Monday, August 19, 2019 3:03 PM
Joined: 2/26/2017
Posts: 586


Unforgiven wrote:

I have never known her to be rude or hostile, ever. 

 

 

______________________________

Hmmmm Look up thread. It’s rude, it’s hostile. It’s not the first, but it’s certainly the nastiest. I may get terse and curt at times, and sure, I’ll chalk it up to caregiver burnout, but I never falsely accuse anyone of criminal behavior. Ever. Not once in my life. 


Iris L.
Posted: Monday, August 19, 2019 11:09 PM
Joined: 12/15/2011
Posts: 18513


yogi60 wrote:
 

Iris, I am so very sorry for how you are feeling, but possibly there is a misunderstanding about the email you received. I, too, have felt "judged" by you and you tried to make me feel like I didn't know what I was talking about in a past post. I let it go but this is too much, and although it is not my skin in this post, it is indirectly all of our skin. Let's be better to each other or we will all leave. This needs to be a safe, no drama, forum to support each other.


 Yogi60, I truly don't remember you or interacting with you.  If I was rude to you in the past, I apologize.  I do not know anyone here personally except Michael, and I have no reason to be rude to anyone.  It is not my intention to be rude to anyone. My career was working with sick children and their worried parents.  I have never made it a practice to be rude to people.  It is possible that I may have come across as less than diplomatic in some of my responses.  


I myself have been very upset over some caregiver posts and I may not have responded well.  I won't go into detail but I have been very upset at what I read from some caregivers.  But I came to a realization a while ago that I am not the thought police.  I am not the care police.  It is not my place to correct caregivers on their thoughts.  It is not my place to correct caregivers on their care of their PWDs.  It is not even my place to comment on their thoughts or their care, even if I might find it to be disturbing.  I was advised to stop reading the upsetting caregiver posts.  I had cut down, but perhaps not enough.  In the future, I will refrain from responding to  caregiver posts.  


Again, I apologize to anyone who felt my response to them may have been rude.  


Regarding Lady Zetta: she made comments that led me to believe that she was in cahoots with Sun/Faith, who was determined to be a troll.  If Lady Zetta is not in cahoots with that person, I apologize for any misunderstanding.


To dayn2nite2: I have reported posts that I believe are upsetting or attacking me.  I will continue to report upsetting and/or attacking posts, but I will not respond on the message board.

Addendum: To be clear, I don't report your posts.  I report posts calling PWDs demeaning terms.


Iris L.


Michael Ellenbogen
Posted: Tuesday, August 20, 2019 5:45 AM
Joined: 11/30/2011
Posts: 4460


Sun/Faith, was not a troll. Just a very sick person who faked her own death. I don’t blame her but her caregiver as going along with her plans. Just a very sad case.  

 

And for the record I never report bad post to the moderator about me because I am better than that and everyone has a right to make comments. Others will determine if they are foolish or not. I also have nothing to prove to anyone here. I have a fantastic track record in the dementia world. Sadly that is starting to slowly come to an end because I am struggling doing what I was once so capable of doing including all of my sites. So many people think and expect me to be so perfect. Not sure I understand why as I am living with dementia. I am by far from that and people should seriously lower their expectations. While I may be very blunt about things I do tell the truth and have no regrets for what I say. The sooner people learn that my intentions are here to help no matter how bad it comes out. The better off they will be if they take the advice and look beyond the poor written parts and the way I say it. It will only get worse over time.

 

Over the years here I have helped many that wanted the help in many ways and that is what I will be remember for. That is the only thing that counts for me. I just have one wish that sadly will never happen. We all come here for help and we always end up fighting with each other. I just can not understand why that happens.  Very sad. 


dayn2nite2
Posted: Tuesday, August 20, 2019 7:45 AM
Joined: 6/20/2016
Posts: 3467


Again, there is misunderstanding here.

If you go back a page in this thread, you will see that my question regarding reporting posts is directed ONLY at poster named jfkoc.

Not anyone else.  I don't know why they are addressing the reporting of posts.
Lane Simonian
Posted: Tuesday, August 20, 2019 9:17 AM
Joined: 12/12/2011
Posts: 5159


Beautifully said, Michael.  No one should expect perfection out of any us.  You have fought hard for people with dementia.  That is what truly matters.
ALZConnected Moderator
Posted: Tuesday, August 20, 2019 9:22 AM
Joined: 8/17/2011
Posts: 357


Dearl ALZConnected Community,




Please accept this post as a reminder that we created ALZConnected so that people with dementia and their caregivers would have a safe place to share concerns and support each other. To this end, we created the ALZConnected Guidelines for Participants with the intent of upholding this mission and purpose. One of the guidelines prohibits any solicitation for research, media, marketing, or related projects within ALZConnected.

1. Encourage Civility

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. 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. Members should offer advice directly to the person who initiates the thread. Please respect the opinions of others and do not monopolize the conversation, and recognize that the diverse opinions add richness to the support provided to members. 

Thank you for respecting these guidelines and the needs of our community. 

Sincerely,
ALZConnected 
Team
Alzheimer's Association | www.alzconnected.org | Contact Us 


Michael Ellenbogen
Posted: Tuesday, August 20, 2019 9:38 AM
Joined: 11/30/2011
Posts: 4460


Maybe you the moderator can tell me why things always go south on this site when people reply. Just for example dayn2nite2 thinks we made an error because we replied about reporting of posts. I only did that to let others know I don’t play childish games so they know my position. Maybe Iris did the same. We should not be challenged on everything we say or do. Thank good our own caregiver doesn’t do that as we would go downhill 25 times faster.  


jfkoc
Posted: Tuesday, August 20, 2019 9:56 AM
Joined: 12/4/2011
Posts: 21248


Sorry, I missed the question regarding the reporting of posts.
alz+
Posted: Tuesday, August 20, 2019 10:52 AM
Joined: 9/12/2013
Posts: 3608


Keep it 100

we got your point a long time ago.  thanks.

******

By the way, to people with dementia, sometimes people post things and demand everyone go along with their version of things. As someone said this is ALZ Connected, not social media where you lay out piles of "evidence" against a member here who SAVED MY LIFE years back by daily coaching me through a suicidal 3 month period after my diagnosis, when I had been misdiagnosed as "bi-polar" by a psychiatrist and put on meds that caused permanent damage.

She daily, and without self importance, kept me focused on getting off the bad meds and moving forward, to seek what would help ME - for over 3 years she coached me into a whole new healthy mindset. If at any time she feels threatened by someone, she has absolute right to avoid that person.

To go after Iris, or a newcomer or anyone here, is a sign of other problems that are not our focus or concern and drive away people who might otherwise post and share their very important story about living with dementia.

Also, note the caregivers who feel for us like JFKOC or JoC, never suck up the air like this. If you feel someone is ever being rude, or trying to diminish your thoughts or feelings it is ok to notify the moderator with a report. It does not mean you are throwing someone off the board, it means "please help settle the atmosphere so I can report on my life experiences with dementia in safety".

****

My brakes are weak and I could have been thrown off today for saying rude stuff if a friend with dementia had not cautioned me!    

Hi Veterans Kid! great to hear from you again!

love and courage

ps: I got the stinking curtains up and peace descended upon the house!



alz+
Posted: Tuesday, August 20, 2019 10:54 AM
Joined: 9/12/2013
Posts: 3608


Michael Ellenbogen wrote:

Love you too alz+. Always thinking about you. 

when I read that I got all girly and weepy.
      thank you. Now you go kick more a** while I stare at my curtains

Unforgiven
Posted: Tuesday, August 20, 2019 1:53 PM
Joined: 1/28/2013
Posts: 2659


Michael, things go south because people tend to take things personally when they see a post that might or might not apply to them.  It's human nature, for one thing, and it's even more pronounced in people who are stressed out from living with dementia.  That goes for the caregivers too.  We're all human.  We all need a safe place to pour out our woes without being criticised.  Those who wish to offer advice and offer help need to validate the other person's feelings first, even if those feelings are clueless.

I don't expect people with cognitive issues to always choose the right word or phrase to convey what they really mean.  Caregivers have less of an excuse.  We really shouldn't be arguing semantics or engaging in debates where one person comes out the 'winner'.  Nobody won here.


ladyzetta
Posted: Tuesday, August 20, 2019 8:25 PM
Joined: 2/16/2017
Posts: 1839


Iris,    I am sorry for any misunderstanding we may have had. I have no idea who this Sun/Faith person even is. She must have been out of the picture before I even joined. I do remember reading about this person who was said to have faked her own death but I was never at anytime part of her messages. 

When I joined 3 years ago I was taking care of my DH who had dementia, I had to place him in a MC facility and I was dealing with a lot of emotions, during his stay and after his death. He passed away last year. And I did receive a lot of emotional support from all of you people and I am still very thankful for that.

All of you are very supportive to people like me and that is a very special thing, this board was all I had. And I do remember the support I got from you. 

Thank You Iris for being humble and  apologizing for something you may not even remembered I appreciate your response.  Hugs Zetta 


jasgrove
Posted: Thursday, August 22, 2019 8:26 AM
Joined: 8/22/2019
Posts: 1


sometimes people need to vent
Michael Ellenbogen
Posted: Thursday, August 22, 2019 4:33 PM
Joined: 11/30/2011
Posts: 4460


Glad to see this is your first post. Welcome to the club that no one wants to belong too. 


jfkoc
Posted: Thursday, August 22, 2019 6:00 PM
Joined: 12/4/2011
Posts: 21248


a welcome from me too and an invitation to join us on the other boards too

It is important that your father get a diagnosis following current protocol. 


Marta
Posted: Friday, August 23, 2019 7:08 PM
Joined: 6/3/2013
Posts: 1247


I was not born in the US. What does it mean to keep everyone 100?
jfkoc
Posted: Friday, August 23, 2019 8:04 PM
Joined: 12/4/2011
Posts: 21248


I am from USA and asked but no answer
Unforgiven
Posted: Saturday, August 24, 2019 12:00 PM
Joined: 1/28/2013
Posts: 2659


It refers to keeping it 100% genuine and honest.  No sugar coating.
jfkoc
Posted: Saturday, August 24, 2019 3:26 PM
Joined: 12/4/2011
Posts: 21248


Thanks. I guess I am a believer in the "spoonful of sugar" school. I don't think that violates genuine and honest.
alz+
Posted: Sunday, August 25, 2019 6:45 PM
Joined: 9/12/2013
Posts: 3608


JFKOC - 

sugar coating, and I add memory loss is often wonderful! When you told me one day that "sh*t happens, things are said and done, you wake up the next day and start over" I was shocked. Really? I asked myself, wasn't every therapist telling me "You have to leave every person who is offensive or has awful moments" my whole life?

Those words, wake up and start over opened the door to my care partner Habib and I to do a major reset and let me have the easy end of life I dreamed of, because I believe you have common sense and a big heart and are a balanced healthy woman. To get started with that I actually told myself to "forget what he said or did yesterday and start fresh" and my brain said Will Do! and now I do forget it, like really forget it, and I make sure to celebrate every nice moment we have, which is my "sugar" and my life is much better, easier, funnier.

Love you for this, don't know if I ever told you how profoundly those words have changed my life. Love you.