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Originally posted by: AlphaLeah
Replied to the other thread, so here I'll just say:
Please don't go.
But I understand if you feel the need to do so.
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Joined: 1/14/2015
Posts: 40463
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Originally posted by: JAB
I am leaving the boards. Since caregivers sometimes worry when a member disappears without explanation, I thought I should explain why. The explanation is quite lengthy, so I'm only posting it on the Caregiver forum:
http://alzheimers.infopop.cc/e...694026587#7694026587
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Originally posted by: LarryD
Dear JAB,
I will post this here and on the caregivers forum.
You have posted over nine thousand(9000) posts that have been helpful to most of the members of this and other forums. How you have done it at all is a testimony to a very organized and fruitful mind. The fact that there are some who are in charge of the rules, even though they are unpublished; who from time to time "rap your knuckles" should not deter you from doing what you have been gifted to do.
There are few others who have the knowledge base you have and that includes all the leaders and supervisors of this or any other group I have come across associated with this disease.
You are greatly needed by the members of this and most of the other forums you monitor and if it costs you a bruised knuckle now and then, it is a small price to pay for such a needed, if unappreciated by management, service to the others on this journey together.
Take a day off, run around the block or whatever else you do to get over the bureaucracies that control our world, and then come back to us.
I will send you some knuckle salve if you want.
LarryD
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Originally posted by: Dazed2
All I could think to say on the other thread is "Oh No...." Dear Lord how we need JAB!
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Originally posted by: Dorinne
Jab,
Posted on the caregiver board already.
I wish you would reconsider, I will rub your knuckles for you. They needs their knuckles wacked.
Please do not leave WE NEED YOU to help us. But if you must, we will follow you wherever you go just let us know.
Love you, (((hugs)))
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Originally posted by: Starling
I am so sorry to see JAB go. She once got me a bunch of honest answers to a question I had, and it made all the difference to me to know the truth.
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Originally posted by: Rkg
JAB, I have seen many of the things your saying and certainly can't blame you, but will say you will be sorely missed. You know you can always join us on the FB group...... At least check us out!
As for the links you provide, that is sad because so many people benefit from your endless hours of research. I as I am sure many others are grateful for your help.
Hope to run into you along this journey, again Thank You for all your help along the way........... Best of luck, and if you get bored look us up on FB.
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Originally posted by: KA
quote: Originally posted by JAB: I am leaving the boards. Since caregivers sometimes worry when a member disappears without explanation, I thought I should explain why. The explanation is quite lengthy, so I'm only posting it on the Caregiver forum: http://alzheimers.infopop.cc/e...694026587#7694026587
I replied on the other forum too, but for what it's worth - I mostly came here to look at posts you wrote. I'm not an active participant because I just can't manage it, but I always got the information I needed (whether I knew I needed it or not) by looking at your forum posts.
As I said on the other board, if this isn't resolved, I shall leave too. Each day I lose a little bit more of my LO. My friends can't really understand. Even our doctors can't provide information and resources like you do. To learn that I'm 'losing' you from these forums, well it's just one more loss.
I'm not putting you on a pedestal, and I'm not a person who makes idle threats or tantrums. But this whole thing that you have posted about - well, I just can't be a part of such foolishness.
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Originally posted by: meeko11
I feel like I am in mourning. I will miss you greatly.
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Originally posted by: DLMifm
quote: Originally posted by JAB: I am leaving the boards. Since caregivers sometimes worry when a member disappears without explanation, I thought I should explain why. The explanation is quite lengthy, so I'm only posting it on the Caregiver forum: http://alzheimers.infopop.cc/e...694026587#7694026587
TheAlzheimerSpouseMessageBoards
thealzheimerspouse.com/vanillaforum
JAB please change your mind and stay.
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Originally posted by: hartford spoiler
Dear JAB - You were very helpful to me in Dec. First and only post. Goodluck to you . You are probably making the right decision. Sometimes the greater good does not help the personal need . We all have enough on our plate. Who needs more grief. God Bless you.
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Originally posted by: AlphaLeah
quote: Originally posted by joang:
JAB is welcome to post all of the links to her articles and information on "the site that shall not be named". I was banned from posting information and articles from my site to this one more than a year ago, and I feel that many of the spouses here have been denied valuable support and information because of it.
Joan from the Alzheimerspouse website.
Joan, would you mind replying and letting me know if it is dot com or dot org or some kind of blogging location - I'm having trouble locating it.
Thank you!
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Originally posted by: lurk
My first thought was no, no, no, no, NO!
My second thought was, I don't blame you!
My third thought was no, no, no, no, NO!
I read half way through your post and decided I had better print it out before it disappeared. And now I think I need to go back and print out all of your other posts also with your list of references. Appparently we have to get educated now as we won't have our dear JAB to depend upon. And maybe the other posts will disappear also. And then maybe I will disappear. I think I am having a nightmare.
Dear, JAB, thank you for answering so many questions for me personally.
Thank you for your cool head when our "discussions" got out of hand, for bringing a voice of reason and intelligent contributions to calm the troubled waters. Did anyone else notice that?
Please, if there is any way we can continue to find you, let someone know. We can pass it around on Facebook or SOMEHOW! We love you. Thank you. Bless you.
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Originally posted by: joang
JAB is welcome to post all of the links to her articles and information on "the site that shall not be named". I was banned from posting information and articles from my site to this one more than a year ago, and I feel that many of the spouses here have been denied valuable support and information because of it.
Joan from the Alzheimerspouse website.
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Originally posted by: Roger G. care partner
Lurk,
Hey, would you please email me a copy of her goodbye post........I would be forever in your debt.
Phyllis and Roger
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Originally posted by: skericheri
Have been busy dealing with issues on the home front. Had a few spare moments this evening to read and was surprised and saddened. JAB and I did not always agree...but...I considered her a valuable source of information.
Please send me a copy of the goodbye explanation that appeared on the Caregiver forum.
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Originally posted by: Melitta
Not knowing why she left---her explanation is gone---is just more of this ambiguous grief that fills my mind.
Is she sick?
I am so sad, she was the rock of this site.
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Originally posted by: Roger G. care partner
Lurk, I have a copy. a friend of mine copied it right away as he knew it would be deleted.
Phyllis and Roger
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Originally posted by: AlphaLeah
Nevermind, found it. [Add "the" in front of the name, and it's a dot com.]
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Originally posted by: Neoh
quote: Originally posted by Cathy J. M.:
I have never been clear about whether or not committed same-sex partners are welcome at the Alzheimerspouse website. Does anyone know?
I always figure I'm welcome until someone tells me I'm not. So far, I haven't run into anyplace that hasn't either been welcoming before I arrived, or adapted to my expectation that my marriage be treated just like any other marriage.
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Originally posted by: KA
quote: Originally posted by Cathy J. M.: quote: Originally posted by joang:
JAB is welcome to post all of the links to her articles and information on "the site that shall not be named". I was banned from posting information and articles from my site to this one more than a year ago, and I feel that many of the spouses here have been denied valuable support and information because of it.
Joan from the Alzheimerspouse website.
I have never been clear about whether or not committed same-sex partners are welcome at the Alzheimerspouse website. Does anyone know? I've been with my partner for over 43 years -- and in GA same-sex marriage is not yet a legal option -- don't want to move further from my daughter (whom my partner helped rear). I wouldn't want to leave this forum; we can still offer a great deal of help and support to each other even with the huge hole left by JAB's leaving. But I might participate some in the other forum "that shall not be named" if I had a better sense of whether or not I'm really eligible there. I'm not interested in pushing a gay marriage agenda, just don't want to try to join where I'm not really welcome. The Alzheimer's forum in the U.K., by the way, has a subforum for gay caregivers -- but really, in my opinion, most of the issues in a relationship are similar whether it's a mixed-sex or same-sex relationship.
Well, I can tell you when I've used their search feature for the terms "gay" "lesbian" and "same sex" I get no results.
While caregiver issues are likely the same, it's the financial ones that can be very different.
Let me know if you find out we're welcome 'over yonder.'
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Originally posted by: Cathy J. M.
quote: Originally posted by joang:
JAB is welcome to post all of the links to her articles and information on "the site that shall not be named". I was banned from posting information and articles from my site to this one more than a year ago, and I feel that many of the spouses here have been denied valuable support and information because of it.
Joan from the Alzheimerspouse website.
I have never been clear about whether or not committed same-sex partners are welcome at the Alzheimerspouse website. Does anyone know? I've been with my partner for over 43 years -- and in GA same-sex marriage is not yet a legal option -- don't want to move further from my daughter (whom my partner helped rear).
I wouldn't want to leave this forum; we can still offer a great deal of help and support to each other even with the huge hole left by JAB's leaving. But I might participate some in the other forum "that shall not be named" if I had a better sense of whether or not I'm really eligible there.
I'm not interested in pushing a gay marriage agenda, just don't want to try to join where I'm not really welcome.
The Alzheimer's forum in the U.K., by the way, has a subforum for gay caregivers -- but really, in my opinion, most of the issues in a relationship are similar whether it's a mixed-sex or same-sex relationship.
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Originally posted by: meeko11
Of course they are welcome. We have had same sex couples before. They don't "over advertise" their situation. It is usually mentioned in the beginning, and then the "well" spouse/partner posts as any spouse/partner would. Believe me, their issues are the same as any spouse/partner.
from the site that won't be mentioned
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Originally posted by: D K
Cathy J.M.
I believe there is no problem with you joining the "other" site as you are partners. There are same sex partners on the site but as meeko11 said that is not what is important. What is important is giving support to the well person who is losing their life partner.
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Originally posted by: Dazed2
thealzheimerspouse.com and yes, everyone is welcome.
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Originally posted by: DLMifm
quote: Originally posted by joang:
JAB is welcome to post all of the links to her articles and information on "the site that shall not be named". I was banned from posting information and articles from my site to this one more than a year ago, and I feel that many of the spouses here have been denied valuable support and information because of it.
Joan from the Alzheimerspouse website.
Joan how does one contact you by email?
Signed up for the unnamed vanilla forum
accessed yesterday, today I'm not known = no access
my pen-name address is dzzippidy@gmail.com
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Originally posted by: lurk
quote: Originally posted by Roger G. care partner:
Lurk, I have a copy. a friend of mine copied it right away as he knew it would be deleted.
Phyllis and Roger
So glad because until I get a new printer, I would have a problem scanning. I'm glad I have a copy.
I haven't had this kind of experience before except for the thread about taking the keys away that was deleted, and I didn't think that was inappropriate. This is unacceptable! It blows my mind.
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Originally posted by: meeko11
Joan won't e mail you. Just go to-thealzheimerspouse.com and create your account. I am on three forums and pick and choose what I want from each. My feeling is that there is enough misery to go around. I used to live in Leominster-sure don't miss the snow.
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Originally posted by: bobby
Don't have a lot of time to spend here, but when I have a need, I come here for help. And thanks, JAB, for all you have done for me and others.
Would LURK please send me a copy of the deleted goodbye.
Thanks, bobcoder@juno.com
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Originally posted by: lurk
quote: Originally posted by bobby:
Don't have a lot of time to spend here, but when I have a need, I come here for help. And thanks, JAB, for all you have done for me and others.
Would LURK please send me a copy of the deleted goodbye.
Thanks, bobcoder@juno.com
Okay, I'll do it as soon as I can go somewhere and scan it. I'm sorry I didn't save it to favorites as some folks did. I just printed it out.
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Originally posted by: bobby
We need resources like her to help us on this terrible journey that we are taking. We surely need some love and understanding - this is not a walk in the park, but a struggle, and we must be kind to one another.
Taking one day at a time -
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Originally posted by: Melitta
Yes, lurk, you said it well! I learned more from her posts than I have in any support group, physician's office or book.
I feel like I walked out of a room, my wise compassionate sister died, and some people cleaned up the scene...perhaps with good intentions, but...
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Originally posted by: lurk
I'm glad I'm not new to these boards. I can't begin to tell you how many times JAB has helped me with her links on such a variety of subjects--everything I ever asked about.
Those starting out will have to get by with our just saying, "Hang in there," or giving our personal experiences, but the references to reading material from JAB and others were so invaluable to me. I'm well read now and will be okay. The journey will take a little longer for others especially if we can't share our favorite books, etc.
In addition, her personal experience has been so appreciated. I noted that she did not post about every little detail of life with her dear husband (like some of us do), but when someone needed help she didn't hesitate to share their experiences.
One of the latest helps to me personally was when she said that her husband had exhibited certain symptoms that had gone away and not resurfaced for a long period of time. That helps so much when one is wondering what is going on with the changes they are seeing in a loved one. I never got around to thanking her.
I wouldn't ask her to remain under the circumstances, but, oh, how I am going to miss her wisdom and compassionate sharing.
May I just add a word to Meeko. You don't use many words, Meeko, but you are always a comfort, and we know that you know what you are talking about. You've been there. I'm so glad you are cyber friends with the very private JAB. Will you let us know from time to time that she is okay? Right now that is my only comfort--to know there is the tiniest link.
I know some have said that we should give this a rest, but one must have time to grieve, and I needed to get more things off my chest.
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Originally posted by: Be Strong 2
Whole lot of editing going on!
Bob 
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Originally posted by: skericheri
The fact that certain threads that JAB contributed to have required a great deal editing is not a good thing and to a certain degree may be responsible for her current situation.
Moderators have other jobs within the Alzheimer Association. Time spent tidying up posts keeps them away from their primary function. Except in cases like threads like this one... A complaint by another forum member is required before they scrutinize a post...or 1f the discussion is heated an entire thread.
Some members (due to ruffled feathers, frustration or jealousy) carry on vendettas against other members. In other words...Some of the people who are now spending their contributing to this thread could have inflamed prior situations. (Think back to the now deleted or closed anesthesia thread that for a time was hijacked by declarations of support after JAB was asked to list her
credentials.)
Having to wait days for moderator clarification could be a sign that a moderator has sought the advice of someone higher on the chain of command for policy making advice that could have lead to a modification of the guidelines..
The fact that people appeared to have joined the forum to plug a treatment option on a certain thread is is reprehensible...but...In my opinion not grounds for deleting an entire thread.
Getting one's fingers slapped is entirely different than being asked by 'moderators' to take a 'temporary hiatus' from the forums. In my opinion JAB have been be a little too sensitive moderator criticism.
In closing I would like to say that: No one member should be exempted from forum guidelines. If JAB chooses not to return, her final appearance would have yielded a more clarified set of guidelines.
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