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Is it just me?
MaryW
Posted: Friday, April 14, 2017 7:32 AM
Joined: 3/3/2017
Posts: 174


For awhile I have wrestled with whether or not to bring this up, however, many of the posts on here leave me struggling with how to respond to something like that?  Often, the conversation assumes the reader knows things or the posts come from such varying directions that I struggle to follow along.  Sometimes, the responses leave me wondering what do you say to something like that?  Am I the only one reading the conversations wondering this or wondering whether this site comes with a manual? 

Mary


Michael Ellenbogen
Posted: Friday, April 14, 2017 8:33 AM
Joined: 11/30/2011
Posts: 4460


I also don’t always understand all the details said and I definitely do not remember on the history of other previous thread as many are able to. That helps knowing more about the person. 

 

As far as people’s responses it is important to remember many of them are based on their life experience. Not all are good ideas or response that pertain to your issues and its important for anyone receiving the information to further investigate. The suggestions are good to point you in directions you may not have thought off. Don’t assume we all have the answers just because we respond. 


julielarson
Posted: Friday, April 14, 2017 8:50 AM
Joined: 9/30/2015
Posts: 1155


I agree with Michael on this one.. It is more or less about personal experience and I have gained a lot from that personal experience on these boards.
BlueSkies
Posted: Friday, April 14, 2017 12:07 PM
Joined: 2/24/2016
Posts: 1096


Also agree here.  Everyone is an individual and responds differently.  No response is better or worse than others.  It is personal gained from personal experiences.  Take what you can and leave what doesn't resonate.  As far as responding...respond to what touches you to "want" to respond to.  We don't have to respond to everything that everyone posts. 

Hope this helps some.

PS...I always enjoy your responses .


Iris L.
Posted: Friday, April 14, 2017 12:46 PM
Joined: 12/15/2011
Posts: 18513


Mary, as the others have said, respond whichever way you want to respond.  Or not.  


I think there is great benefit in seeing a variety of responses for people like us.  Often, we believe we are the only one who thinks a certain way.  I know for me, I like to have a diversity of responses.  Some things come up that I hadn't thought about.  So one may have a different response, but it can be of great benefit to another.


Iris L.


MaryW
Posted: Friday, April 14, 2017 3:07 PM
Joined: 3/3/2017
Posts: 174


Good common sense advice.  Guess it's just me, then. 

Mary


jfkoc
Posted: Friday, April 14, 2017 3:56 PM
Joined: 12/4/2011
Posts: 21246


Frequently a thread will "morph" and the topic drifts to something other than the original topic. It is hard to pinpoint the process in the thread but it can be confusing for me to follow. Sometimes everyone kind of goes with the flow and other times not. 
When a thread becomes OT (off topic) but it viewed as something that others want to delve into a new thread may be created.

llee08032
Posted: Saturday, April 15, 2017 9:49 AM
Joined: 5/20/2014
Posts: 4408


No special rules required Mary. Just be you. You're doing fine. It is nice having you on the board.
llee08032
Posted: Saturday, April 15, 2017 9:51 AM
Joined: 5/20/2014
Posts: 4408


I know we might seem like a strange lot at times. But I like that about US.
MaryW
Posted: Saturday, April 15, 2017 10:25 AM
Joined: 3/3/2017
Posts: 174


Maybe I hadn't been as clear as I thought I was being.  However, where I find I am struggling with what to even say to some things, is when people respond to something I posted.  For example, in a conversation about end of life care (something that has been on my mind lately), someone responds that we shouldn't talk about it because Nadine is a multiple personality and doesn't like hospice (except it wasn't about hospice).  Like, what do you even say to something like that?  How many times I have sat poised to type something and can't come up with anything to type in response, and instead have gotten up and wanted to bang my head against a wall.  I was just hoping that I wasn't the only one, but apparently I am.  I probably shouldn't have said anything.

Mary


llee08032
Posted: Saturday, April 15, 2017 10:33 AM
Joined: 5/20/2014
Posts: 4408


Sorry I misunderstood. Are you speaking of communicating on the caregiver board?
jfkoc
Posted: Saturday, April 15, 2017 10:38 AM
Joined: 12/4/2011
Posts: 21246


I too took Nadine's post at face value and was surprised by the comment to "dismiss" her post.
julielarson
Posted: Saturday, April 15, 2017 10:45 AM
Joined: 9/30/2015
Posts: 1155


Mary I too have trouble knowing what to respond to threads and I tend to stay away from posting if I do not know what to say.. I will however read other responses incase it jogs something in me..
Iris L.
Posted: Saturday, April 15, 2017 4:51 PM
Joined: 12/15/2011
Posts: 18513


Mary, in regard to that thread.  I responded more to you on that thread.  If another poster comments, you can comment back if you want, or not.  This is a message board, to leave messages.  It's not a command board, where we are commanded to do or not to do something.  It's up to us to say what we want to say.  We should not attack anyone personally.  That's a no-no.  


Your opinion is as valued as anyone else's, so don't hesitate to post, Mary.  


Iris L.


MaryW
Posted: Sunday, April 16, 2017 7:22 AM
Joined: 3/3/2017
Posts: 174


Thank you Julie, it is nice to know that I am not the only one. 

 Many of the conversations are hard for me to follow because people seem to have known each other for so long that there is a lot that is known but not shared so the conversation jump rather than morph and seem incomplete. There is just not enough to go on to comment or jump in because I am not privy to what is not shared.  This causes me to wonder if there is an intentional bias to exclude new members from the conversations?

Although I admit being completely confused by the start of a topic of "end of life care" when rather than use that threat to talk about end of life care or planning everyone instead tells me to start a second topic on it...what is up with that?!  I prefer to take posts at face value and not think too much about what is going on for the person posting it.  What the indirect and confusing comments do is make me have to think, okay this person really doesn't want to talk about this and start to wonder why they would start a thread that they didn't want to talk about?  Which seems kind of odd, which are not thoughts that I prefer to have of other people. 

I wrestled with whether to bring it up or not, but I thought it was best to give people the benefit of the doubt that maybe you didn't realize how you were coming off than to just conclude I had walked into a mess of something. 

Mary


Iris L.
Posted: Sunday, April 16, 2017 2:57 PM
Joined: 12/15/2011
Posts: 18513


MaryW wrote:

 

   This causes me to wonder if there is an intentional bias to exclude new members from the conversations?

 

 

 

No, there is no intentional bias to exclude new members from the conversations.


I think we as a board make a point to welcome new members.  We encourage new members to read older threads and to post their own threads.


One thing I have noticed is that sometimes new members will reactivate an older thread in which the flow of the conversation has diminished.  Starting at the end of a thread really can be confusing.  New members are encouraged to begin new threads of their own.  New threads will be more pertinent and induce many responses.

 

 We are all here to support each other and to receive support because we have memory loss, cognitive impairment and/or dementia.  We have a small group of members and we can support each other.  In posting we get to know each other and to respond to each other.  

 

Again, I encourage new members to read threads and to begin their own threads if they desire.


Iris L.

 


jfkoc
Posted: Sunday, April 16, 2017 3:36 PM
Joined: 12/4/2011
Posts: 21246


Mary...The end of life care (on I have AD forum) was posted in January. The purpose was to shed a light on what one caretaker posted about their experience with the end of life care received by their loved one.

Dayn2nite is a caregiver who brought up her belief that the author Nadine had  posted this kind of information before or that this story has been posted periodically by someone. 

The story posted was very dramatic and to me frightening. I think that all dayn2nite meant to do was to advise that the message might be taken with a grain of salt or as she put it for what it is worth.

I did not see where anyone said not to talk about end of life care.

Plans for end of life are discussed on all of the forums. They continue for a while then fade away when all seems to have been said all posting.

There are always new members and they are so important. With them come questions about topics that may have been discussed a year ago and the year before that. The point is that members are new and a new discussion is essential.

Now there are discussions about end of life care and death with dignity scattered through several forums.

I am going to stick my neck out and start a thread that might pull the conversations together


MPSunshine
Posted: Sunday, April 16, 2017 4:07 PM
Joined: 5/21/2016
Posts: 2012


Hi, MaryW,

I am not younger-onset AD or Other Dementia but it is NOT just you!

Many times, when a person posts a thought, another person will come along and post their thought.

That thought frequently is relevant to the original thought. 

However, sometimes one finds, there is a weirdly dis-congruous thought posted.

(I DO hope dis-congruous is a word because my spell check is telling me otherwise.)

What happens is that then the thread becomes DERAILED.

That is the reason I left alz, albeit briefly, because of all the derailing and the segues to other realities, not nice realities nor supportive realities. 

The derailing is distracting, and person says to her/himself, "Hey, what happened here? My thought was totally taken out of context and the wrong way!!!!"

They sometimes just leave to
 
... never come back.

or

.... come back but are very cautious.
... or perhaps only respond to certain people.
 
... and don't respond to others.
I personally have a Do Not Respond List.
Because everything I post to those particular people will be taken personally and attacked rather than responded to thoughtfully.

And, Nadine60, I would posit, is a real person posting her thoughts and her experiences about the end of life for her dear husband, not to be confused with other people posting their thoughts!

dayn2nite2 does not have some "inside scoop" on who is who and whether Nadine60 is another person.

That is just preposterous!

I am also a Nadine, and I say that there are many people in the world with their own experiences and opinions and even other Nadines, and that paranoia theories abounding as they do does not matter to the real issue of discussion of important issues like end of life issues and what you would like that to look like if you are thinking about it.

Ignore them! Post your own thoughts! We will listen. We will respond. Real people.

Best regards,

Nadine aka MPSunshine

 


Iris L.
Posted: Sunday, April 16, 2017 4:21 PM
Joined: 12/15/2011
Posts: 18513


I do not remember what is posted for the most part unless I go back and refresh my memory, sometimes by reading the entire thread.  I did not even remember who Nadine was.  Believe me, there are many horrible posts about horrible hospice and horrible end of life stories.  There are also many good stories about good hospice and good end of life.  Since it is my thread that is being talked about, I will say this.  I saw a thread that disturbed me, and I posted it as a warning to my fellow patients.  If they chose to read it, fine.  If they chose not to read it, that was fine with me also.  I did not intend to start a discussion about end of life concerns.  When I posted, I did not expect to receive responses.  It was just for people's information--an FYI post.


Iris L.


BlueSkies
Posted: Sunday, April 16, 2017 9:41 PM
Joined: 2/24/2016
Posts: 1096


Is it just me or has this post taken an interesting turn?  
dayn2nite2
Posted: Monday, April 17, 2017 12:09 AM
Joined: 6/20/2016
Posts: 3466


MPSunshine wrote:

dayn2nite2 does not have some "inside scoop" on who is who and whether Nadine60 is another person.

That is just preposterous!

I am also a Nadine, and I say that there are many people in the world with their own experiences and opinions and even other Nadines, and that paranoia theories abounding as they do does not matter to the real issue of discussion of important issues like end of life issues and what you would like that to look like if you are thinking about it.

Ignore them! Post your own thoughts! We will listen. We will respond. Real people.

Best regards,

Nadine aka MPSunshine

 

Oh really, well all I'll say is if you believe hospice is there to kill your LO you're the paranoid one.

When people come under different names and post the same ridiculous information and claim it's a personal experience, it gets tiresome.  Posting that NHs are snakepits and hospice is murdering countless people and the only way to get decent care is to have it at home is wrong and unhelpful.

Come, go, leave, stay, whatever...but I'm not going to keep ignoring that there are people who come here with multiple names and post the same hysterical ravings. 

BlueSkies
Posted: Monday, April 17, 2017 12:19 PM
Joined: 2/24/2016
Posts: 1096


I would like to add in MPSunshines defense, that I know how she feels.  At one time, many on here thought that I was Sun_Still_Rises because she and I were much of the same thoughts and was accused of being her several times.  It was hurtful and frustrating to say the least.  How can you "prove" you are your own person and not a fabrication of someone else.  Well, you can't really unless you are willing to give out all your personal information and who in their right mind would do that in this day and age.  I too almost left the boards completely, especially after Suns death.  But I decided I would not let a few push me out of a place I knew was full of wonderful people and great possibilities.   So, I decided to stay and take the good and ignore the bad and it has all turned out just fine.  I hope we can all do that.  Take the good on here and ignore the bad and negative comments.  They will always exist on here, it's a part of life in general not just on the boards, but we don't have to react to them, right.

 Anyway, my point is, let's please not get paranoid and think the worst of others.  I like Mary's idea.  We should take peoples posts at face value and try not judge, figure out what "games" they may be playing.  I feel when you go in that direction that you may be playing with a bit of paranoia and that is never a good thing.

Love to all....


chrisp1653
Posted: Monday, April 17, 2017 1:33 PM
Joined: 1/23/2017
Posts: 1327


Oh my goodness. What a rat's nest this is looking like. You know, I've only been a member here for a few months, so I don't have the long experiences of other posters, but I've been told before that I have thick skin, so let me jump in here with it.

If any of you are like me, you will remember that first time someone said dementia. It knocks you for a loop. In our case , the hospital social worker gave me a folder with pamphlets and information sheets, and then sent us on our way. Sensory overload !

In the following days, I went to the website for The Alzheimer's Assoc. to see what I could find. Wow. How helpful - NOT. support groups close to me ? Nope. Lots of them in the downtown area. I hate driving downtown ! How about classes ? Hmm.. this one looks interesting. Oh great. It's like 100 miles away !

Then I found the link for this site. Praise God ! Real people. Real problems like mine. Plenty that were not like mine. Gripers, sweet commenters, technically over-my-headers, political diatribe. Everything.

This site is not perfect. The posters are not perfect. The posts themselves are often hard for me to understand. The long threads are impossible ! The abbreviations suck. I promise myself that I will never learn " textspeak . "

But here's the beautiful thing : People. With differing opinions. Differing ideas. Some good, some not so good, and some great. People who are caregivers. people who have the disease.

There is a vast pool here of knowledge and insight. Blue Skies , ( gotta love her , ) said it well. We take what we can use,and discount what we can't. That's always the best idea, because no single thing works for everybody. We all are different, with different backgrounds and different experiences.

Are there bumps in this road ? You bet. Hurt feeling ? All the time. Thoughts taken out of context ? Threads lost ? Of course  !

That's what happens in real life. And real life is what I see going on in here every day.

Please,please, please, don't let a hurt feeling stop you from posting. The strength of this site is only because of the diversity of the people involved.

Dementia, in all its ugliness, is not a respecter of persons. It hits, and hurts with no regard to wealth, color of skin, ethnic background, IQ, or any other dimension one can think of.

Post. Comment. Read. Make mistakes. Put a hyphen in discongruous .

This site is a life saver, but only because of the people using it.

You ALL help me everyday. If something turns ugly, then back off if you have to, but please keep posting.

Speaking only for myself, if Nadine ( the one I know , ) or Blue Skies, or Veronica, or Jim Broede, or Veteran's Kid or Iris  - or any of you - stop posting, then it will diminish us all.

I'm done. For now.

 

Chris


Iris L.
Posted: Monday, April 17, 2017 1:35 PM
Joined: 12/15/2011
Posts: 18513


Nadine60, one of the caregiver spouses, posted about her late husband's experience with respite care and palliative care.  His story is actually horrible and the opposite of how it should be.  I am linking it here so that members will be aware of what should not happen, and what their family members should be on the lookout for.  


We can be in charge of our end of life.  We have to know what we want, and what we don't want for ourselves.  Our next-of-kin also needs to know what we want and how to provide it for us.  They need to know how to be assertive with hospice and palliative care workers and professionals.


The story is upsetting.  If you don't want to read it now, bookmark it or save it, and read it later, or let your POA read it.


MC / PALLIATIVE CARE - THINGS WENT SO WRONG!

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147531407


 
 

This is what was posted.  I added the italics today.  There are no games being played.  We were getting along so well.  I wonder why this is being brought up again?


Iris L.


Sayra
Posted: Monday, April 17, 2017 2:00 PM
Joined: 8/10/2016
Posts: 4056


BlueSkies,  I love your name and I am so glad you are still here.  I enjoy reading a lot of yor posts.  I feel like you feel.  I was at work one day and I was looking at a patients flowers.  Here it was from her DIL.  The card said I am so glad that many years ago we agreed to disagree.  I thought how nice and I have never forgotten that card. 

 


MaryW
Posted: Monday, April 17, 2017 2:05 PM
Joined: 3/3/2017
Posts: 174


Then I asked you for suggestions on how we might go about planning for our end of life care. It is a topic entitled "end of life care" and this was something I was interested in talking about because I am alone.  It must have been the wrong question to ask because you deflected and I tried asking again and then you deflected again saying that you did not post this to talk about it but only to serve as a warning.  The response from everyone else was to start my own thread if I wanted to talk about it instead of talking about it and I was beginning to wonder (besides day2nite2's paranoia) if I had somehow opened a window into the twilight zone.  There have been many posts that have made me wonder how to respond and want to get up from my keyboard and hit my forehead against the wall. All I wanted to know was whether I was the only one struggling to follow some of these conversations?  Two others confirmed that this happens to them as well and I am contented that I am not losing my mind and the matter is solved as far as I am concerned.    

Mary


julielarson
Posted: Monday, April 17, 2017 2:15 PM
Joined: 9/30/2015
Posts: 1155


Mary, this really needs to be talked about in my book.. I will start a new thread about it because I know of at least two people who want to talk about it..
jfkoc
Posted: Monday, April 17, 2017 2:37 PM
Joined: 12/4/2011
Posts: 21246


Mary...I am greatly relieved that you are "contentedly" one of us. I think we are a good bunch, both  PWD and CG and together we are making headway in so many areas. I look forward to getting to know you better through our message boards....all of them.

I hope you will find time to put some info on your profile.

I did start a thread Death with Dignity hoping that it might be the discussion you want.


Iris L.
Posted: Monday, April 17, 2017 3:38 PM
Joined: 12/15/2011
Posts: 18513


Everyone is welcome to begin his or her own threads on whatever concerns him or her.  I don't see what the difficulty is here.


I am beginning to feel like I am being attacked.


Iris L.


MaryW
Posted: Monday, April 17, 2017 6:33 PM
Joined: 3/3/2017
Posts: 174


Since this topic was about me and my confusion over what was going on it seems odd that you'd take it personal.  Guess I have a lot to learn about the personalities here!   Maybe I should keep notes on who to avoid?

Thank you Julie I will check it out and appreciate your kindness.  Although it seems odd to start a second topic on the same subject.  Chalking it up to I have a lot to learn about the personalities here.

Mary

 

 


jfkoc
Posted: Monday, April 17, 2017 7:16 PM
Joined: 12/4/2011
Posts: 21246


I am so very sorry that you feel a need to make notes on who to avoid here. I have been a member for over 10 years and have never felt that anyone on here needed to be avoided.

That does not mean that I agree with what every person says or that there are not times when I do not like an approach but I have always felt the people spoke from their heart with the best intentions. I wish you felt that way too.


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Joined: 8/17/2011
Posts: 357


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