Do any of you remember The Dirty Dozen? We brought humor to the site along with caring and knowledge-until we offended some one and got run off. Well-my posts have been edited and it's time for me to leave. I have cherished the friends I have found here and will always be grateful to Joan for creating this safe haven. I'll still be peeking in-but holding my troublesome tongue.
Oh bluedaze, PLEEEESE don't leave!!! We really do need your wisdom, experience, compassion, kind words and friendship. I for one have learned so much from you and the other dozen and selfishly still need your advice and perspective. Please reconsider and stay.
No, bluedaze*, tell me it ain't so! I can't believe this. I do remember the Dirty Dozen too! You have been a wealth of knowledge, wisdom and a wonderful friend to so many of us. Your support has been awesome - well, you are awesome!
bluedaze* - you are always so wise and insightful. what's more, you have so much compassion, so much grace in everything you post. you are always the champion of what is right, what is kind -- and you defend those who may not always have the courage to speak up.
you are a truth-teller. you cut through the BS to the heart of matters.
i have never read an unkind word from you. yes, you have called out others who may have made hurtful statements, but only to make them aware that they are hurting others who already have so much stress and sadness in their lives. that takes courage. you never do it an arrogant way, but in a straightforward, honest manner.
message boards - regardless of the topic - tend to become like a junior high schoolyard. you have the mean kids, the bullies, the popular crowd, etc. we don't need meanness here, and i believe you have made every effort to call out anyone who exhibits that tendency.
As far as editing, I understand. I have been edited too. [Someone editing the editor! Mon Dieu!] It happens. I don't agree with it 99 percent of the time.
bluedaze*, please reconsider. take a time out if you must, but don't leave for good.
I've heard it said That people come into our lives for a reason Bringing something we must learn And we are led To those who help us most to grow If we let them And we help them in return Well, I don't know if I believe that's true But I know I'm who I am today Because I knew you...
I echo other comments for you to reconsider, or take a break and come back. You will be missed. I've always looked forward to reading your posts and consider you a valued friend, as I'm sure everyone else does, too.
@ Dazed: bluedaze* was pointing out something she saw as inconsiderate and potentially hurtful to others. She was making a suggestion to someone to take it down a notch. As she noted in her original post, she was edited.
Since her remarks were considered unsuitable, she feels she does not want to continue to post.
So sorry. We all are under such stress that it is amazing that there isn't more friction, but I am glad there isn't. I don't don't know what was removed or what happened by I will miss you. Your comments were read every time I came on here. You have a special knowledge regarding hospice that not many have. Maybe you will reconsider and we will see you at another time. I hope so...you have so much to offer.
The burnout thread then. I see the 'edited' markers.
This is extremely disturbing. Board monitors have the right to delete any post they deem fit. But no one anywhere has the right to change what I say either by partial deletion or modification and present that as something I said without identifying that it has been modified.
Showing the 'edited' marker is the identification that the writer changed the original content. Not that someone else went in and modified it.
The words written on a forum are the property of the forum owner. Altering them personally and leaving them as being what the person said is completely unacceptable.
I want this clarified by Joan please. May I have a ruling on your policy on this please?
To Wolf and everyone else who is requesting clarification - It is 11:15 PM; I am exhausted, am trying to rest as much as possible while my sister is here, and I cannot write anything coherent when I am on my way to bed. When I am more alert, yes, I will definitely clarify the situation.
I don't read everything every day, I don't know what this fuss is about, but Bluedaze* this stuff happens on every board and in every life. So someone gets their drawers in a twist, big freakin' deal! Can't you let it pass in favor of staying here and helping those still so much in need? Everyone is fragile & sensitive--and have a right to be, and others are just difficult. Your leaving will not help anyone, your staying will.
But we need to keep some other things in mind that matter too.
1. Under very difficult circumstances this board has no equal.
2. Joan is a sufferer of what this does to caregivers too. Running something like this is quite demanding.
3. Following her advocacy for Alzheimers and her body of work, I have no questions about either Joan's character or motives.
4. Virtually every person here is under strain.
I don't think it's right that things inside posts get changed. But what Joan is trying to achieve here goes beyond that. I support this board and believe intensely in it's good work. I don't want my words changed by someone else. But that is nothing to the help we all so desperately need. And that is nothing to the help I have recieved here and that I intend to give back.
You have my support Joan whether I agree with everything done or not.
If everyone here mouthed off each time they were offended by another's post, nothing worthwhile would ever get written.
Indeed many are fragile and sensitive but lately I notice that when someone posts that they are coping well or handling things fine or have support, etc., they often get slapped by somebody who isn't or doesn't. That's not nice either.
When joining a forum one must agree to abide by the guidelines of that forum. It appears 2 things happened here. Rather than a clean delete of a post--presumeably in violation of a guideline, it was modified/edited and the remainder left on the Thread. The writer, justifiably upset, is choosing to leave he forum rather than request clarification. The result--a tempest brewing. Solutions: Clarification as to how offending posts are to be handled from now on. Frankly, while the content of the forum belongs to the forum owner, the words in a post belong to the writer and need to be the true words of the writer, modified only by the writer. Any other modification, negates the value and truth of the entire forum. A post which violates the guidelines should be deleted in its entirety. The writer could always ask for clarificatiuon if he/she so chooses.
On a forum with such a diverse membership, sometimes things are said and done which don't agree with everyone. That being true, one must weigh what's said for its value to us individually. We don't heve to agree. All things considered this forum does a phenomenal job of allowing us to support each other through this most horrendous of journeys. We can always skip reading what doesn't appeal to us, or apply to our circumstances. Losing a participant, particularly a seasoned Caregiver, because of a "bump in the road" of forum operations, is saddening. But, every member here knows we each have to make the best decisions we can for ourselves and our LOs.
Joan has said she'll clarify the situation as soon as she can do so coherently. Let's just stand-by for now.
I echo everything everyone's said...I have never seen or read anything that woud have upset me...until now.. Please don't go bluedaze*. so many supportive comments have come from you...it's what helped me and I'm sure many others get through some tough days..
Let's everyone relax, and have a cup of coffee or a glass of wine. (whichever works.)
Extend the benefit of the doubt to all fine people, and jump to no conclusions.
I say from experience, boards can be tricky to moderate. Feelings get hurt. It is a testament to the sensitivity we have acquired as caregivers that we manage as well as we do, because forum blowouts are infamous elsewhere.
We'll be fine. Nora loves us, Joan loves us. I'm passing around Godiva chocolates now. I will even let you take the Raspberry Crown if you really want it.
I am going to address this issue of administration editing once. When I have more time, I will make it a separate sticky.
One of the reasons this website and these message boards have been so successful for almost 5 years is because of the dedication and hard work of my message board monitor and myself. For the record, my message board monitor has a full time job as a high school math teacher, yet she reads every post at 6 AM before she leaves for school, and continues to check them from the time she comes home from school until she goes to bed. And all weekend. I get an e-mail alerting me to a new member, and a phone call if she thinks a post is inappropriate or is concerned that it may lead to arguing and bickering. I also check the boards all day. I have said many times that differing opinions are welcome as long as they are stated as your own opinion, and you are not trying to force it on someone else. It is possible to disagree in a respectful manner by simply stating – “I disagree with you. This is the way I would handle it. This is my opinion. This is what works for me.”
I reserve the right to remove any comment I feel is disrespectful, insulting, or that I know, based upon years of experience running these boards, will lead to back and forth bickering and arguing. If I feel a post is totally inappropriate, I will delete it entirely, and send a personal e-mail explaining it to the writer.
In the case that is currently causing all of the arguing, I removed one line that I felt was inappropriate, and would cause arguing and pitting one group against another. I then removed the answer from the next person. I did not write to those in question, and that was my fault. I definitely should have. But I was correct in my assessment, as even the removal of the remarks has caused arguing and bickering, pitting one group against another, which I will not tolerate.
I have stated before – we are a very diverse group. There are many who hold opinions and philosophies that are so opposed to each others, they may make us grit our teeth. We have different upbringings, different life experiences, different religions, different political affiliations, different methods of handling problems, and different financial situations. It is not possible for every one of us to understand each other’s philosophies.
However, we SHOULD be able to state our opinions as our own without insulting anyone or baiting an argument.
I phinally have an explanation to why my posts were so bizarre and downright phunny. I was edited and my persona was changed..I was edited into a person that I was NOT.Since this disease has no boundaries, I also have no bounds when I talk about it...I laugh in its face because while it is devastating to see this disease progress, it is also rewarding to see the outstanding caregivers that result. Nora is one of those, and she has been my rock and light at the end of the tunnel. It is with great sadness and regret that she is choosing to leave, and I fear that without my light and inspiration, I too may be forced to leave. This fairy tale does not have a happy ending, although a few of us do manage to find some happiness after.
Again, please don't leave Nora. I have been on this forum since a few months after it's inception. I can honestly say that I have never, ever been offended by anyone's remarks. There are always things with which we do not agree but they are that persons beliefs or perceptions. I, too, would be upset if my post was edited to say something different than what I had intended. Joan's plan is a good one. Please don't go Nora.
Yes please let's discuss! Oh how sad it would be to lose these precious members.
As we are on the topic of editing, I would respectfully like to add another comment. Remember a few days ago when two members posted their thoughts and stated their religious beliefs in it? The were quite adamant, however, I did not see where they told anyone that they needed to believe the same as them.
As a strong believer in any faith, I don't see how you can separate yourself from it. (of course, if it was gruesome or violent and mean....) But most of the world religions carry the message of love, and many of redemption.
Though I believe in God, and Jesus, my faith is often deeply tested, and weak, hence I cannot say too much about it. But when I read from others like those stated, I respect their faith and do not take offense. If they said something like, "You need to believe in God, you must go to the cross", well that would be pushing it.
Just a niggling thought on all that. I respect all of you.
I think the thing to keep in mind is that not all of us are experts at conveying our feelings in a written format. That's one of the major reasons that we might, in another context, use emoticons to indicate that we're being ironic, or tongue in cheek, when otherwise we might look humorless, or judgmental, or whatever.
Let's not wig out anymore. This is but a flub in the fabric of an eminently successful and helpful group forum. I love Nora too, and she knows it. No more rumblings about abandoning us please everyone. Email me. I'll talk you out of it.
Ok, rephrase--instead of wig, let's say "make too much of it." I do understand what Nora was addressing in the deleted post, and like others I do not disagree with her. On the other hand, I get why the edit occurred. I wish we could let it pass. No one likes every call the ref makes.
It makes me sad, after all we've been through, to have anyone--Phranque, bak, Nora--anyone, say they think they need to leave over one thing.
It makes me sad too Emily. Hopefully it will all come around in good time. this board is so special, nothing like it.
I guess it can be like regular friendships in one way. I think too, that the person who is at the top, in charge so to speak, is the one who will be the focus of what we are willing to accept. We can squabble or disagree, but we look to that person for the final decisions. And if it strikes a real disagreeable chord, I can understand why we would not want to be a part of something.
I've had a * behind my name for over three years now. I have never posted much, but gained so much knowledge to help Claude in his last year. I have always felt we were a family, and I check in every once in awhile to see how everyone is doing.
I know there are rules, but it really irritates me that someone like Nora, who has so much knowledge to offer feels she has to leave because of someone who has never had anything constructive to say. All his or her posts do is a sad attempt to inflate their ego.
It's time for me to go also. I'll miss y'all and keep you in my prayers as you travel down this horrible road called alzheimers.
I am sorry I feel like an idiot, I don't know what's going on (don't get to read a lot of threads and try to comment when I can, or ask questions) so I'd be stupid to comment. But what I can say is Bluedaze* you have been a good, kind friend on this board and I hope you will reconsider leaving......I like so many need you.
I am going to post twice. Please know how much we need you and all the others on here. Maybe not everyday or every month. Since this is a progressive condition things we have not even thought of today may come up tomorrow and we need all hands on deck to help us get through this. Can't rmember the gal's name that use to post all the info on qualifcations for placement regarding social security. At the time I knew it would be years before I probably needed that info, but I read it and thought when the time comes I will know who to ask. Well,she has moved on I guess, because we never see her post. And, you will be missed just like she is...you are an official resource person. We don't have many of those on here....that makes you special.
The main reason I am posting again, because just before you posted and I had found out my dh was going to be getting hospice care you were the first person I thought of if I needed to ask a question or two or more. We need you. Please reconsider.
To my very dear friends-we each must follow our own paths and our own hearts. I said in my post that while I was leaving I would always be peeking in to see if I could help anyone navigate through uncharted waters. I will do that.
Nora, I am very saddened. Selfishly I know I will need your wisdom and guidance since DH is in mid-late stage 6 and I will need the experience and compassion you offer to get thru these last stages. I am afraid more than I've ever been and was comforted that I would have you, Phranque and others who would guide me through these last stages.
I am sorry to see this thread. I have gained so much help over the years through this site and there are still many more who are gaining help through our sharing of our lives. I have made lifelong friends here and travel with some of them. I hope we can just let this "blow away" and procede to get on with our lives and keep lifting everyone up. I don't post often anymore but I read all responses every day and I will still be here. Take care....
I was a sysop (or sysmom) in the late 80s on a commercial system. One of my jobs was to delete inappropriate messages. It eventually became very unpleasant because we had people gunning the system, deliberately pushing the line. One person we liked kept on violating the rules and said "just edit my postings." Which we wouldn't we would just delete. People were claiming personal insults because someone disagreed with their position. One person said that, after a lot of thinking, he found someone else's use of the word "negress" insulting. When writing to the other person, he insisted the word was fine no matter how many people felt insulted. I eventually left, it was no longer fun. I do not see any of these problems here.
So, I think everyone here is doing a great job, including Joan. Perhaps Joan should have deleted the entire message instead of removing a line, and she should have notified the posters. But from viewpoint this place runs very smoothly and without the flamewars on many other bulletin boards.
I know we all need a safe place here. But we are all human, we all make mistakes, and we have differences of opinion that will not be bridged, and we have to be bigger than those differences. I think it is important not to leave based on a single incident. Yes, it might be helpful to take a break, as blue daze says she is taking. And it is not this simple, this place is important to us so any problems here seem very big to us. If we didn't care about this place we would be much less likely to take offense.
I am getting off my soapbox now and attending to wife and son.
Message boards - on any topic - have an ebb and flow to them.
Here, there is more sadness than joy simply because we all know there is no happy ending to this journey. So when there is an occasional dustup, it really can hurt.
But we do find joy in the friendships we've formed - I know I have, in the short time I have been here. bluedaze* - you are loved and respected and admired.
The star behind you name says it all, not only did you earn your star, you have earned the right to express your grieveing and sorrow that all here will someday be in that position shared not only by you but many who are here now or have moved away from this site because of the pain they see and feel when they read the posts of newcomers. All those anxious moments in the past come back as if they happened yesterday and the pain and tears start to fall as the emotion surfaces that you thought was buried in the past. I know how you feel as I too read many of the posts here and the tears start as I read of all their fears and stress as related to all those things which we with the star have already endured. You may ask then why do I stay here? The only thing that comes to mind is that just maybe something I have witnessed first hand as an only caregiver could help someone else do or make a decision they are confused about and really don't know what to do or how they should act about it. Please reconsider leaving as your posts are as important to the newbies as anyones. God bless you and all the others who come here for advice and comfort. Bruce D *
This is a complex issue. First, I should state, I didn't see the deleted posts. However, I agree with redbud* that there have recently been posts by one member that seemed self-congratulatory more than they seemed helpful to others. All of us here are facing tremendously daunting situations in our daily lives, we don't need to be distracted by anyone who may have a dual agenda. My guess is the posters who were edited were just trying to get that point across.
AD alone brings enough stress to last 100 lifetimes. I hope everyone (including the member I referenced above) will learn from this experience and stay on.
There is no question as to the value that Nora has added to this site.
Nora,when I signed into this group you don't know how much I appreciated your e-mail intrducing yourself and offering to answer any questions I might have. I never had to call on your expertise but I always kept your e-mail knowing as DH gets worse there was someonr I could turn to for answers.I have always enjoed your comments, it seemed like we thought alike.I do hope you will continue to post,don't be surprised to get an e-mail from me.May you ahve much happiness, you have paid your dues.
Wow...I just joined a few days ago and have been so pleased to receive such helpful advice from the responses to the two posts I've submitted, "Bluedaze" being one of them.
It seems to me that, in the face of what we are all dealing with in our lives as caregivers to our spouses, to lose even one voice that brings some sort of inspiration and light into our collective very difficult lives is unacceptable.
That being said, if there was some sort of totally inappropriate comment expressed, I suppose I could understand. Do we, as subscribers, have the option of reading the posts that are deemed as such?
I have been away for a couple of weeks, in crisis.
Nora, bluedaze*, I have not been here long enough to know about the dirty dozen. I don't know what the comments were, or the topics in question. So, I can only speak to what I know.
And I know this- you are kind and generous, and your love extends to your kitty- Gracie- and I think from previous searching (on other topics), past posts you have or had another kitty named Meeko?
I, too, have benefitted from your sharing.
It is not for me to say whether you should stay or not. I just want to say thank you.
Wow-Abby you did search. Yes-I did have two wonderful large red cats named Meeko and Dennis-miss them both. Hope your crisis has eased. I will continue to peek into the site as time permits. All my best wishes.