what I learned that may be relevant regarding peer volunteer replies:

I just figured out that volunteer moderators are NOT ALLOWED to share their personal feelings about topics.

Does this now change the way you see the replies from peer volunteers? they may seem a bit chilly emotionally, always repeat the same standard answers...

I think it is the rules they agree to when becoming volunteers. Not sure.

If one slips up and says something about how they FEEL about another person on boards they may in fact be reprimanded or "fired".

Been here sine 2013 and just realized this. I had been holding opinions on some answers that seemed canned, that the person giving the answers was a bit robot like.

No, they are not robots, they are following rules of being a volunteer. the rest of us are free to ramble and spew at will. No longer sitting in judgment about this now that I get it.  

In my opinion some should be fired. I am okay when they make comments as themselves but not in the roll of a person in power. In my opinion they should have a separate name on the board for being able to contribute. Something else was deleted this past weekend. They think people don’t notice.

I'll answer as one Peer Volunteer.

No one has ever told me or intimated to me that giving my personal opinion is not allowed.

In fact, often when I know that people hold differing opinions on a topic, I will begin by saying: in my opinion.

As a PV, I am on more boards than before. In the before days, I was on I Have AD and would some times go into the Younger Onset board.

Hello dear Alz+; I am glad that you wrote to express what you thought may possibly be happening with the Peer Volunteers.   I can wholly reassure you that there are absolutely no rules whatsoever regarding our being able to express our own feelings and there never has been.  We are given absolutely no script.

Though we are Peer Volunteers, we are Members first and continue to be Members.  As for volunteering, we are volunteers in the absolute purest sense of the word.   No benefits or wages; we do this on our own time on a completely volunteer basis.  I've been doing this since 2009, and in that time, no PV has been reprimanded or fired or been given a script or told they could not relate on the Forums as Members themselves.   We have no concerns regarding those sorts of dynamics whatsoever.

Sometimes when facing a problem of my own concern, or addressing a particular topic,  I will say that I am speaking as a Member so that other Members will not feel uncomfortable giving feedback.

We PVs have no "power" as one of the other Members mentioned here.  Let me clarify once again for that Member; we Peer Volunteers do NOT edit or delete any posts or threads whatsoever; we never have had the ability to do that and do not now have the ability to do that, nor would any of us want that; editing and deleting can ONLY be done by the person who wrote the post themself OR by Administration after they screen the post for issues with the policies in the Terms and Agreement that we all sign when we become Members here on the Message Board.  The Terms and Agreement can be found on the bottom of the page and one can click on that to read the policies.

I was thinking about what may sound like "canned" responses.   I had to think about that a bit and it dawned upon me.   We get SO many new Members each day; many times a problem issue is very much the same.

Examples of redundant communication:  I know that when I am going to refer a Member to the Alzheimer's Assn. Helpline, I  provide the contact number, explain what a Care Consultant is and what they are able to assist with and that there is no fee for that service.  When discussing "silent" urinary tract infections, the information and explanation is the same, so that too comes out sounding the same from post to post.  When speaking in regard to swallowing issues, that explanation is the same and the recommendation for swallow testing and describing that procedure is identical, so that is also one of those redundant sounding bits.

In an instance such as that, my explanation will sound pretty much the same from person to person because it IS all the same in that context.  HOWEVER; I always try to really see the person behind the writing and as much as can be done, to feel what they have been feeling and to understand and empathize with that, and I need to also bring information for assistance as much as I can.  This is done on all Forums that I am providing responses on.

When in the worst of days with my own LOs, such understanding as well as concrete assistance from Members here was very supportive and very helpful for me and at times helped me keep my head above water when things were quite dicey.  I have been and always will be extremely grateful for that.   Becoming a Peer Volunteer was my way of saying, "Thank You," and wanting to give back to others.  We PVs are not perfect, we are human beings just like everyone else here.

All Peer Volunteers mandatorily must have been actual caregivers for someone with dementia or have dementia themselves.   Lisa and Mimi both have dementia.   Mimi not only has dementia, but has Myasthenia Gravis as she has shared with Members before.  King Boo has cared for her father who very recently just passed away.   EagleMom is currently caring for her husband and she also facilitates a support group.   Be Strong 2 cared for his wife who passed away a few months back.   I am an RN who cared for many PWD and assisted families with their challenges during my career, but who also has a lot of hands-on experience with caregiving:   MIL with AD; GMIL with AD; Mother with FTD; Step-Dad with AD.    I coordinated care for MIL and GMIL, and was primary care provider for mother and step-dad for many years. 

During my journeys there were many challenges, and even many joys.   I also had tremendous grief to be faced and this all goes into who I am now as a person; I remember those feelings as I support and relate to the Members here and when welcoming those who are new. 

This Message Board is all about people; that is the priority and that is no small thing, it is huge.   Each and every person and their situation is unique.  Never, ever, ever, would I be so egocentric or prejudiced to subjectively ascribe motives to any group of people whether persons with dementia, or caregivers, or people who are in bereavement and grieving.  After all, that would be subjective guessing containing many errors, and I am not walking in their mocassins; that would be a dreadful disservice.  We PVs take our cues from each Member as an individual.

Each person deserves their own personal contacts; BUT as needed,  it must also be infused not only with caring and understanding, but when necessary, it must for most also contain practical information so help can be forthcoming where the rubber hits the road so to speak.  AND . . . there are also moments of humor and personal sharing not connected to dementia dynamics.  That is part of the whole.

Thank you for your thoughtful concerns and caring.  If you have other questions, please feel free to ask.

J.

Thank you so much for that clarifications as I was concerned with the original tread. That still does not change my thinking. You may not have the capability to deleted but that does not stop you folks to raise a flag to the admin to delete. That to me is the same thing. I would think if you folks were more like us you would join us to ask the administration to not be so quickly to delete.

I do appreciate what you do and thank you. You need to become a bit more open especially to those who are PWD. And I am ok with using same old information as I could not even imagine needing to help and reply to all of these constant same replies. I know it drives me crazy. That is why we need a system to eliminate the need for that as I have described many times in the past. 

I think this thread may be referring to me.  I am not a Peer Volunteer.  I received a reprimand regarding what I posted about my personal feelings about the responses I had received from certain caregivers from a prior thread.  I was devastated and still disheartened, because I feel like I am not allowed to express myself.  

Everyone is allowed to vent, but not me.   In fact, everyone is encouraged to vent.   I am not a mean person.   I do have feelings.  I miss participating on the boards, but I am now wary and uncertain about posting, because certain people may take what I post the wrong way and complain.  I hesitate to post this post.  The original thread was about how much I appreciated three recent uplifting posts from Alz+.  All I was saying is that I need to be uplifted, not brought down.

Iris L.

Not sure why you are thinking that Iris. Glad to see you back.

well I am so glad to be wrong on so many counts!

I am also VERY happy to see IRIS here today, too - not that I keep track of when  she is on boards or not. 

Yes, I misunderstood some things and thought BOY what an insight!

*******

 to the volunteers: you have all helped me many times and all of you are kind and knowledgeable to the new people who do indeed need the same Starter Pack and then bailing us out when we go off track. Jo C - I do not recall what some of the things were you re-directed me about but I know they were both urgent and your advice worked.

  I did think Iris was a volunteer adviser until I just read her reply!! How many years of reading "Iris L." and thinking Peer Volunteer! YEARS I have read her name and assumed she was part of the formal board members. Maybe because she is a physician and gave me a life jacket over and over. Go figure. Maybe because when I first joined she was so supportive, like a lighthouse, I assumed every time I signed in she would be here. Not so. I was just lucky.

Well, I apologize for any insult - none was intended.  Thank you volunteers for all you do  every day.  I mean that sincerely.   

I am so sorry Iris that those wounds still hurt. Thank you for being so ... kind and patient in explaining you are NOT a volunteer. It does make your presence here even more profound that you helped so many people day after day, year after year, just because...

love to all 

Iris

Welcome back

You have been missed!

And you do have every right to vent.

Unfortunately my memory of just what happened is vague.

I have a vague feeling that you were on the receiving end of some unjust comments. These Boards have recently become much more pleasant place to come

I just hope it remains so.

((((Iris)))),

So good to see you here!

I think many PWD have been deleted at one time or another. It is tricky and confusing for us and can leave us wondering what we said or did wrong? Or if we really posted? It can also make us feel diminished like our feelings are not important and that others feelings are more important than ours. There appears to be a lack of trust in us. I can remember being deleted in the past but cannot remember why which can make matters even more confusing. 

Good morning, alz+.   I just wanted you to know that I saw absolutely no insult in your post whatsoever.   It's all good and I really appreciated your thoughts.

 My post was a bit long and I apologize for that, but I wanted to give a bit of background on the Peer Volunteers as many Members do not know what goes into that designation.

 llee, whenever Administration makes any edits or deletion of a Member's post, they always without exception will contact the Member and let them know what they did and will give the reason why.   Really and truly there is no exception to this.

 NOTE:  I will say that at times, an entire post will disappear, or part of a post will disappear all by itself . . . . a computer glitch.   Yesterday, I had several posts completely disappear; some sentences disappeared in other posts and and I even had a paragraph go missing all of a sudden.  I also got knocked off the Board twice and had to log back in.

 Those separate incidents were all abrupt computer glitches and I reported them on the "Contact" function which is at the top of the page.  This seems to happen unbidden from time to time.

 If you find a post missing or sentences or paragraph suddenly gone and you have NOT received a message from Administration, do go to the top of the page and report the incident on "Contact."  One will usually get a response back from the technical staff letting us know they have heard us and are working on the issue.

 I too am happy to see Ms. Iris back amongst us.   You were missed, Iris.  So glad to hear your voice again.

I have got to wondering how things are going in your house alz+; have you been able to get anyone to do some further work on your repairs/remodel? I so hope all is going better on that front. 

Recently, I have been thinking so much about Tracy, "Young Hope," who used to be here with us so much.  Her FTD was advancing and her husband had left and she was alone with her son who was just graduating from high school last we read her posts.   I've tried to see if I could find her, but was unable to do so.  If anyone here has contact with her, I'd love to know how she is.

 One of the Members on the Spousal/Partner Forum mentioned she did jigsaw puzzles online.  I had never seen that, so I used Google and went and looked.   My favorite site I found was, "Jigsaw Planet."   Easy to use and puzzles from six or ten pieces all the way up to 300. 

 So; I tried and realized it was far better to start off with a smaller puzzle and to put the border together before doing anything else.   Now I find myself once in awhile going and doing that at night if I am bored.  It is rather calming as long as I don't get irritated at the puzzle.   At least with Jigsaw Planet, one does not have to register and no fee. 

The Australian Members on Spousal are fascinating in all the things they do and the different kinds of birds and wildlife the describe from their own backyards.  Hard to realize they are presently in the hottest part of summer there.  So opposite from our seasons.  I really enjoy hearing from people from other parts of the world.  We have even had people drop in from India, Japan, Viet Nam, Scotland, England, and other countries.   We also have quite a number of Canadian Members.   We're turning into the League of Nations!   However; this also reminds me of how much Alzheimer's and related dementias are a global issue; AD knows no boundaries. 

Hope everyone finds this a good day, and I send hugs to everyone.

 J.

Hi Llee,

The actual numbers of deleted posts would be interesting. I think it would be apparent that very few posts are deleted. Ads, which are forbidden, are possibly the most frequent.

Others are violations of guide lines.  And for those of us with memory problems, it comes down to the observance of the golden rule: Do unto others. 

Perhaps those of us who are edited, should copy the e-mail notification and copy it someplace. That we can read it again when we are  less emotional..

Be aware that sometimes a prior post is removed and subsequent posts are removed because without the original, our reply makes no sense. We may think that our post was deleted. Which is true, but not because our response violated the terms; someone's prior post did.

I have never felt that as a PWD, my feelings are less than accepted. In fact I have felt just the opposite. I am sorry, if you have felt so.  And if I ever notice such a response to any one on these boards, I feel that as a PV is my responsibility to report such to the Administration. 

The treatment of all people, caregiver or PWD with honor and dignity is high on my priority list. I have issues with the very few posters who feel differently.

Well I agree with original post an Michael.  I think peop who be peer volunteers should be carry 2 accounts here...one pers, one as peer volunteer.  I do think peer volunteers should be encourage forum participants towards guidelines an help this place run smooth...jump in offer support where support may be lacking...an help guide peop resources.  Otherwise title be uselss my opinion.  I do no think they should voice their pers opinions...or help wage some wars here like they do...an I agree Michael, some need be striped title here for said violations. 

I think they should have second account where they just be themselves, can post as selves...their thoughts feelings, need support themselves...an their opinions.

I mean, my g-d...talk bout try make this place dementia friendly an make sense peop.  It just makes sense have clear defined roles...an stick those roles.

But yes, as eve one else said...it no be way done here.

I do think it ok vent.  I also think it is important vents do no cross certain lines.  I also think (some thing that no happs here) that when certain caregiver vents cross line abuse - that this no be condoned, or protected sacred cow-like...an instead they be given resources an may be staff call them, give help. 

I think it ok have opinions, eve strong ones.  We do no all have think same or agree...that is what makes world wonderful an exciting.  It gives more well rounded view things.  Agreement does no mean some one likes you, an disagreement does no mean some one no likes you...it just means you see things diff. 

I also be think it be ok be diff from others here...indeed, I think it be vital an important be diff from groupthink.  What we do no do here well, is allow for diff.

In end...the premise place is be SUPPORTIVE...find way support peop where they be at, eve if diff than you. 

<3

trying to remember what brilliant response just popped into my head before the box appears to type it in,is like running to the bathroom squeezing legs together to not wet floor.

Ok. Jo C - you have a good sense of humor, always appreciate that.

**********

having one's post deleted is really strange for people with dementia. It is like haven't we got enough DELETING going on with every thing that happens and every thought that comes and goes? and all the work, all the effort into composing! Then some one else does not like it and - GOODBYE. 

Or typing some thoughtful response and then website signs me out because I took too long or a spy agency deemed it too insightful and erased it. (I made that up)

When I wrote seriously in past there were times I was just streaming this fantastic story line or critical point in  a book and there would be a power outage and all was lost, or when one computer fried and no data was recoverable. Just sickening. Nothing to be done but move on to next thing.

***And who deleted my favorite shoes? bought in new mexico for some HUGE award I was SURE to win some day, ca not find them anywhere. Looks like someone also deleted a bunch of money numbers from my bank account, too.

And today the forecast of "sunny and 60 degrees" was deleted by 10am and replaced with a cloud that descended onto hill top with damp gray chill.

***

SUN wrote about changing her brain from BREAKING to Break Dancing but so far it won't go there. Yes, I understand the metaphor and the disconnect from wishing to being.

***

So today Keeper took me to St Vincent de Paul thrift shop and I bought 4  pair of like new shoes for $9 total. Now I have to delete some dirt from house.

love you all

Quote from Iris:

Yes, I did receive communication from Admin re: why my thread was deleted.  The message I received is that expressing my feelings and thoughts as a patient (venting) is wrong. 

 At any event, I am so glad you're back. As you can see, the members do love you and your insight,

There is a diff be tween venting ("I had rough day") verses attacking other pers ("so an so is bad pers"). 

Venting be ok...talking bout you self, hard time you be having self...life. 

Attacking other pers no be ok forum.

Hope that help clarify. 

But yes, they should explain...an help you understand. 

<3

Hang in there. 

In the future, when I am attacked, I will no longer let it slide.  I will protect myself.

Iris L.

If you feel you are wrongful deleted please send it to me privately. If you are right I will help you out. I agree with Iris if she had received that email that was completely wrong to delete it. I also know for a fact id someone here starts talking very negative about caregivers. Speaking about their own concerns they do get attacked by caregivers and it becomes very heated. The person with dementia has the right to say the worst tings possible about their caregiver. If they can’t vent here were else can they go. The caregivers should have more insight to not engage us over these issues but sometimes I wonder who has the better mental status.

Iris, we do have to protect and advocate for ourselves or where would we be?

I did get a generalized email when posts were deleted. I don't recall that I understood "why" but I've since moved on. I cannot afford the luxury of staying stuck and try to shake it off and move forward. 

For me, I feel like we are not trusted to be civil or appropriate when it comes to certain matters. I cannot speak for others but it is hard not to feel that way. I think very highly of my fellow cohorts here and think we have done a fantastical job at handling many issues on the board with civility and grace. We may be small in numbers but we certainly are a force of power and knowledge. I love how when the going gets rough how we put our differences aside and take each others back. I love how we cut each other slack. 

But I don't feel we get enough credit for how well we deal with some of the issues and at times it feels like we are under a magnifier. Like someone is watching, expecting or waiting for us to slip up. Some our feelings around these issues may or may not be fact. Nevertheless, it is a fact that we have these feelings and that our feelings are valid. 

These feelings are the residue of discrimination and stigma that sticks to our skin. 

Rationalizing what may or may not have caused these feelings and the other side of the coin does not work. It is just a fact that we have these feelings and a fact as well, that these feelings will arise and rear there ugly head for the rest of our lives. Basically, we have to give ourselves permission to feel the feelings and greatly need validation that it is okay to feel the way we do.

BTW alz+, I am concerned that my career and job will be deleted soon and I have to make preparations. 

I acknowledge that feeling of being assaulted when a post is deleted because so much of our lives are being deleted month after month.

How about if when we post something that troubles the people who monitor boards, that post is put in a REVISION mode. The troubling part is noted to the writer and they have chance to edit it?

Getting a notice that we crossed a line and out thoughts removed brings up feelings of helplessness and a sense of dismissal. I don't mean thin skinned, I mean because we are in a trajectory of being diminished by this illness - to outsiders esp - our personhood is in question to many people in authority. doctors, relatives, the general public all hold a common view that we "disappearing" and "the long goodbye".

That is why I think it matters to show respect by allowing us to revise or edit or words.

I agree, we should try to move on, despite issues.  But being told that I can't express myself about how I feel, is like being told I don't have a right to exist.  

We patients use this board to express our feelings and to clarify our feelings.  It's just a fact that often, patients and caregivers will see the same issue differently and even in opposite ways.  Our feelings are not wrong, they are just different.  We have differences of opinion.

My deleted thread veered off from my original post about my own feelings by input from certain caregivers.  It would be one thing if we could write, "I only want patients to respond to this thread."  But I don't think that would be allowed.  

I have read some very upsetting statements on the caregiver boards.  I used to respond, but I was told caregivers need to be able to vent.  And that's okay.  I have no problem with venting.  Question:  Are patients allowed to vent?  I can guarantee that venting will be upsetting to some people, for whatever reason.

Michael, I will forward the email I got to you.  I don't know if I can forward my response, but I will try to figure it out.

Iris L.

 Just forward it to me by regular email. So much easier than using the AA system

Iris wrote:  being told that I can't express myself about how I feel, is like being told I don't have a right to exist

*******

I understand that feeling.

*******  

I love how Michael is helping a lot of us sort out issues here of what was intended, if we misinterpreted something,and helping us come to a resolution in private. I love how people rise to the occasion in new ways on this board.

 Very good suggestion “I would think it would be fine to ask for only PWD to respond. “ Unfortunately it does not work. In fact most times it gets them to respond more negative. Go figure.

 And just for the record I would do the same thing for a caregiver if this happened to them. I am looking for equality from all so we can all get along without the need of big brother. Some agree with that and others do not.

Michael, I can't find that email on my server, so I can't forward it to you.  It must have been automatically deleted after I read it.  Thanks for the offer.

Iris L.

I believe the thread in question was the one where both my husband and I were laughed at and ridiculed. Iris spoke out in my behalf.

I did copy and save the hurtful post knowing that it would be erased.

That thread was one of several that took a bad turn and were deleted.  I really wish that everything had been left alone, warts and all, so that everyone could better understand what all the fuss and ruffled feathers were about.

Iris did, at one point, ask the members to leave it to the PWD to settle an issue on their own.

 Hi Bob,

To be very honest with you I am surprised you would even ask this. I agree with Iris said. You need to remember that we are heard for support and to vent. In fact we have it worse than a caregiver. A caregiver can call a friend or seek help from someone else. You can still control you life if you chose to. Most PED are no longer capable doing any of that. So if there is one place to really burn some steam of this is it. Most of us real do not have friends left.  And no it is not the same as many caregivers loose there’s. They could at least talk if they wanted to. We are not capable.  We have confusing depression which is hard to figure out by doctors. Don’t know if it’s the dementia or is it really depression. Very hard to treat if one does not know. If a caregiver has depression and I would like to say most do. Especially at this site by the way some response. Well they could seek help and take something that could help get their lives a bit more to normal. We try not to take those drugs as they just complicate our minds even more. For us it is critical to not lose any capacity at this time.  

Care givers are more than happy to vent. The difference is when the ask for help we can offer the help from the dark side they absolutely have no knowledge of and hopefully it will help them just a little if we can let them know some of our feelings which most of them do not get the feedback. This is about all I can write without getting of track. I hope this helps you understand it better.

One other thing that happens between CG and PWD. They get into arguments. WHY? Does anyone here who is a CV don’t know the first rule of dealing with someone with dementia. DO NOT ARGUE WITH THEM AS YOU WILL ONLY CREAT A PROBLEM - Trust me I know firsthand some of us here are very open to criticism some of us are no longer capable of seeing it or dealing with it. Sadly I will be in that boat not to long from now. So I do ask now to give me a break when I cross that line because it will be out of my control and you folks should know and realize that. I rarely attach someone directly on line but I can assure you I have reach out to them privately. I am also the first one to admit if I am wrong and apologize. That seems to be lost on those board. I can see why it happens from a PWD, but why do CV not know better. I think now this all sounds very unfair and I agree. Any time you want to switch shoes I would gladly give this side up if you think its so great. I so wish I was not who I have become