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Does the president election have anything to do with the attitude change on this website?
llee08032
Posted: Friday, March 17, 2017 10:26 AM
Joined: 5/20/2014
Posts: 4408


I'm so messed up with this rash today, antihistimine and antiviral  meds I can't tell if being told to read American Hx was an insult? If not please forgive me.
julielarson
Posted: Friday, March 17, 2017 10:35 AM
Joined: 9/30/2015
Posts: 1155


All, I appreciate that this place is a safe place to come and give my opinions, I will not be taking advantage of the fact that no one tore me a new one and that I got to say my piece. Thank you for that..
Unforgiven
Posted: Friday, March 17, 2017 1:11 PM
Joined: 1/28/2013
Posts: 2659


Going back tobyour original question, Michael, this has been creeping up on us forva while now.  The recent election was merely an example of how bad it has gotten.  Both candidates were described by their opposition and the media with extreme hyperbole, which almost described the contest as one of good versus evil.  It rubbed off onto the supporters of either candidate.  So much anger and hatred.

I was in favor of neither candidate, but voted for the lesser of what I presumed to be two evils.  Even that was fruitless.  My state went for Trump, in spite of being a traditionally blue state that went for Obama twice.  Now, I know that my friends and neighbors are good, generous people, not racist for the most part.  I felt that the immediate protests were disrespectful, not so much to the winning candidate, but to our fellow voters and the rules under which we conduct our elections.

I hope you get the President's ear, Michael.  I hope he listens and does what he can.  Remember, he's only one man who needs to deal with Congress.


jfkoc
Posted: Friday, March 17, 2017 1:26 PM
Joined: 12/4/2011
Posts: 20707


I do not think you are paranoid at all nor do I think that we have a troll. If ever that is suspected the word gets out pretty fast.


Rennbird
Posted: Friday, March 17, 2017 3:13 PM
Joined: 2/23/2017
Posts: 81


If you are referring to my post about American History, I am not a plant.  I recently joined.  My husband was diagnosed with AD in January 2015.  My neighbor (female) across the street had early onset AD at 55.  My nextdoor neighbor (male) is in his fifties and has Parkinson's.  My neighbor (female) two doors down has AD.  Another neighbor (female) was diagnosed with MS many years ago.  Another neighbor (male) died as a result of Jakob Creutzfeldt Disease, which is like Alzheimer's on steroids.  My husband was a career military officer in the Navy and served for a year in Vietnam as the officer in charge of a Swift Boat. You are correct, in many ways we have improved as a society but it hasn't been pretty.  I forgot to mention that my mother was also diagnosed with AD but died early on as a result of ovarian cancer.  My sincere apologies if My post offended anyone.  It was not my intention.  We are all suffering.  I live in a regular neighborhood 25 miles west of Washington, DC.  My life is very small.
Rennbird
Posted: Friday, March 17, 2017 3:36 PM
Joined: 2/23/2017
Posts: 81


I forgot to write that when my mother was diagnosed with AD in October 1997, I remembered thinking that by the time I reached my mother's age (75), there would be a cure for this disease.  She was put on Aricept.  My husband is adopted and his adoptive parents lived a long life with sharp minds.  My mother-in-law did have a stroke in her mid-80's.  We have no biological history on my husband.  When my husband was diagnosed in 2015, I was very saddened to learn that no tangible progress had been made.  This wasn't a complete shock, as I had been keeping an eye on the situation.  I had had that naive trust that America know-how could achieve anything.  I have learned the hard way.
Rennbird
Posted: Friday, March 17, 2017 3:46 PM
Joined: 2/23/2017
Posts: 81


My reference to reading history was generic.  My older sister was an English teacher.  I have always said that she sucked all the grammar genes out of my mother's DNA.  My writing style leaves a lot to be desired.  I sincerely apologize.  I would never intentionally hurt anyone (although, I have wanted to punch a few people in the nose during my lifetime). I am sorry for the misunderstanding and for any pain I may have caused you.
julielarson
Posted: Friday, March 17, 2017 5:15 PM
Joined: 9/30/2015
Posts: 1155


Rennbird you have caused no pain, it was puzzling but no pain... I come at all my life from the sociological standpoint.. I did really well in Social Studies as a girl and than later in college, but I had my share of History in school and college.. It pays to be well informed that is true.
Mimi S.
Posted: Friday, March 17, 2017 7:40 PM
Joined: 11/29/2011
Posts: 7027


Rennbird,

Relax. No one is attacking you. We are delighted that you found us and are joining in the conversation.

You do have an unusual amount of dementia for one person.  Since you are local to the DC area do think about popping in to the annual Forum which will soon begin.  Joining a group as they visit Congresspeople would be worthwhile. You might check the schedule for what interests you and you can get to.

And I've read all your posts and can find nothing offensive.


Rennbird
Posted: Saturday, March 18, 2017 11:45 AM
Joined: 2/23/2017
Posts: 81


Thank you, Mimi.  After posting the message about my neighbors with neurological diseases, I realized that I forgot to include a neighbor (female) who lived diagonally across the street.  I am not sure of her age but she may be in her late 70s or early 80s.  Her family moved her into a memory care unit this winter.  Another neighbor has a 16 yr. old who has autism.  He was about three when he moved here.  To me this seems like a lot of people on one street and these are the ones I know about.  I think I will have to do my advocacy via Internet since I tried using a sitter for my husband a few hours in early January and it made him very unhappy.  I probably should not be posting under this category but I was interested in knowing more about the subject of early onset dementia.
Mimi S.
Posted: Tuesday, March 21, 2017 6:46 PM
Joined: 11/29/2011
Posts: 7027


Rennbird,

Any one may post any where.

A hint some folks have used to get a caregiver into the house.  Introduce the person as a friend who's come to visit.  The three of you hang out the first day. Maybe engage in some kind of simple game or activity.  The second day, you recall a short errand and the 'friend" offers to stay while you run your errand.  These sudden errands become longer and longer until it has become routine.

Let us know how you make out. The folks on the Spousal board may have other ideas that worked for them. Harder to find, but a male caregiver is often more acceptable.


alz+
Posted: Tuesday, March 21, 2017 9:02 PM
Joined: 9/12/2013
Posts: 3608


Rennbird - it seems really significant that so many people near you have neurological problems. In my neighborhood we have had about 6 people with cancers, all died but 1.

 "clusters" of illnesses like this must mean something. Glad you joined the conversations!

****

Llee and everyone - I have wasted many hours writing quips on FB pages in the past 8 months and too much time online reading comment sections. What is bothering me is the abandon with which people attack each other and the freedom to write anything that comes with being anonymous.

I understand quite a bit of it is from computer bots, Sock Puppets, who spread all over fake news and gin up hatred. Now it is harder for me to discern what is real and what is fake. 

This matters a lot on our boards because for years people here have been counseling, encouraging and helping each other keep living our lives. If fear or doubt of other people HERE starts to develop it might end the special community we have enjoyed.

None of us have  time to waste. I hope we realize the importance of every story, every experience, every discovery or what helps and what doesn't. 

I am hoping someone learns how to manage things when someone takes offense.  Some connections are stronger than others, I would like to see the personality conflicts minimized, seems that is kind of a social media thing that can only hurt the cause.



Michael Ellenbogen
Posted: Wednesday, March 22, 2017 6:10 AM
Joined: 11/30/2011
Posts: 4244


Rennbird - I agree about what others had said. I would let some folks know of your discovery of all of these folks in one area have been impacted. It could be nothing but worth letting someone know. And don’t worry about using this tread to write. I am not one to get offended by that. That is what this site is all about. 


Rennbird
Posted: Wednesday, March 22, 2017 7:15 AM
Joined: 2/23/2017
Posts: 81


Thank you.  I will share this information with my husband's neurologist.
llee08032
Posted: Wednesday, March 22, 2017 8:24 AM
Joined: 5/20/2014
Posts: 4408


Llee and everyone - I have wasted many hours writing quips on FB pages in the past 8 months and too much time online reading comment sections. What is bothering me is the abandon with which people attack each other and the freedom to write anything that comes with being anonymous.

I understand quite a bit of it is from computer bots, Sock Puppets, who spread all over fake news and gin up hatred. Now it is harder for me to discern what is real and what is fake. 

This matters a lot on our boards because for years people here have been counseling, encouraging and helping each other keep living our lives. If fear or doubt of other people HERE starts to develop it might end the special community we have enjoyed.


I don't trust and believe  everything I'm hearing. This is not the same board I joined several years ago.... I would have run away feeling hopeless. I've decided not to post my private life or thoughts and have started a private group. I miss Iris. Where is she?


BlueSkies
Posted: Wednesday, March 22, 2017 10:42 AM
Joined: 2/24/2016
Posts: 1096


It's a shame the amount of paranoia on these boards.  I do not believe anyone is looking for others private information.  Even if they see your info, what will they do with it?  Share it? You already have shared it with the world when posting on here.

 llee, it's okay here. Really.  There is nothing to be afraid of.  I value your friendship here and would be very sad if you chose to leave or limit your sharing.  Your sharing has helped me tremendously in the past.  I hope that you will continue.

Please everyone, it's time we use these boards for what they were intended.  Supporting each other, sharing info and just being here for each other.  Quit worrying about what others are here for.  Just like in the "real" world there will be people that you don't like or are suspicious of (their motives).  Just do what you do in the real world.  Take what fits and is positive and ignore the rest. 

I for one would like to have this place to come to and connect with others like me and support and get support from them.  We have a nice group of people here.  Can't we just be here for each other.  I think we need each other more right now than ever.  I am still in shock about Sun as I am sure everyone is.  We need to grieve, hold each other up and move on. 

Lots of love, courage and peace to all....


julielarson
Posted: Wednesday, March 22, 2017 11:11 AM
Joined: 9/30/2015
Posts: 1155


I fully agree with BlueSkies.. llee it is going to be alright.. Please post as you did before things got weird on here.. I miss everyone of you when you are not here and would hate for that to happen more and more.. I have been at a loss for words in the last two days.. I just do not know what to post anymore.. I am confused and really do not know which direction to go in.. I am not leaving but I am less prone to post anything going on with me these days.. I miss Sun terribly and feel my heart is broken into bits.. I am sending out hugs to anyone who needs one..
BlueSkies
Posted: Wednesday, March 22, 2017 11:18 AM
Joined: 2/24/2016
Posts: 1096


Julie, follow your own advice to llee.  " Post as you did before things got weird on here." 

We will all be fine.  We must do what we always do.  Make the best of things and move on.  That's what we do with our illness everyday.  We have a lot of practice. 

I hear you Julie, my heart is in pieces too.  Hugs back to you...


julielarson
Posted: Wednesday, March 22, 2017 11:24 AM
Joined: 9/30/2015
Posts: 1155


Also I feel this needs to be said. I am hoping that people know that I am not going to jump all over people who feel differently than I do about the new administration.  I hope that what I typed did not give that impression but I am feeling like it did make a difference and that people might think I want to fight over it all.. I said my piece in this thread and am now done with it.. I am moving on and I hope that everyone else can too.. I guess in my quest to be understood I may have stepped on toes and I did not mean to do that..
Unforgiven
Posted: Wednesday, March 22, 2017 11:44 AM
Joined: 1/28/2013
Posts: 2659


The way I see it, the current political situation is a lot like getting a dementia diagnosis for yourself or a loved one. It is what it is.  The real question is how do we cope with the new reality?  The best way to do it is by discussion and learning to cooperate.  As the Klingons used to say, only a fool fights in a burning house.
Michael Ellenbogen
Posted: Wednesday, March 22, 2017 11:54 AM
Joined: 11/30/2011
Posts: 4244


It kind of makes it hard to move on BlueSkies & julielarson as both of you had asked me not to respond to you in the past. But this is a thread I created so that makes it kind of hard to not do. Because someone else told you false stories about me you chose to not want me to associate with me. That is the reason I do not respond to your threads as per your request. And I am okay with that if that is what you want.
julielarson
Posted: Wednesday, March 22, 2017 11:59 AM
Joined: 9/30/2015
Posts: 1155


Michael, I just did not want you to email me off site.. That is all I asked for.. I am perfectly fine with you posting to my threads on here..
dayn2nite2
Posted: Wednesday, March 22, 2017 12:07 PM
Joined: 6/20/2016
Posts: 3053


So....the problem is not in sharing what you do online, it is who you are befriending in private.  I think it is wise here and ANYWHERE to be careful who you are calling a friend - it honestly could be anyone.  None of us have to show our ID here or otherwise prove we are really a caregiver or really have dementia, etc.  

Always be aware that there is a certain percentage of the population, especially on message boards dedicated to people with illness, who will portray themselves as being involved with the illness in some capacity.  As an example, I'll point to the people who participate on FB and message boards pretending to have cancer and really don't.

That happens here too.  Anyone can have multiple accounts here, can post as anyone and have in the past.

Know who you are making friends with or at least be prepared that people are not always who they portray themselves to be.

The signs that someone is playing around are a very dramatic presence, stoking the fire of discontent, "supportive" aliases that appear the same time the imposter posts, and then when the storyline concludes, "new" aliases start posting and "making friends."  This will happen when the imposter feels like he/she is going to be found out or that people are putting pieces of the puzzle together.

This goes for any type of message board on the internet, it's not limited to just this one.  It's always wise to be skeptical.  This has nothing to do with any election - it is as old as internet chat and message boards are.


BlueSkies
Posted: Wednesday, March 22, 2017 12:08 PM
Joined: 2/24/2016
Posts: 1096


Michael, why are you doing this????  Do you enjoy having arguments on here???

"You" sent me a message telling me not to talk with Sun.  And that I should be your friend.  "You" threatened me and said in a message which I still have by the way, that you have written a book and that you were very well known and important person in the dementia community and that it would be wise of me to be friends with you and that this was my last chance to be your friend.  I found that message so arrogant and full of yourself that I sent you a message back that I did not need friends like you.  That I didn't care how important you "think" you are.   "you" sent a message to "Julie" telling her I was not a good person and to not respond to me after I refuse to accept your invitation.  How nice of you.  I know others think a lot of you, but what you have said and done to me has made me think otherwise. 

I have tried to coexist with you on here without starting arguments and let all that go, but apparently you don't want to. 

Honestly Michael, you amaze me with your comment.  Unbelievable!


dayn2nite2
Posted: Wednesday, March 22, 2017 12:14 PM
Joined: 6/20/2016
Posts: 3053


Do not participate in private messages from people asking you to call them or to share info about other posters.  Yes, Michael that includes you.  I notice you ask other people to contact you privately often on this site and actually that is not a good thing to do for you or for the person you want to speak to.

Again, nobody knows who is who here, including you, Michael.  If people want to get in touch with you, your presence online in general is enough for them to search out.  You shouldn't be contacting other board members to share information on other people or to ask them to call you.
BlueSkies
Posted: Wednesday, March 22, 2017 12:16 PM
Joined: 2/24/2016
Posts: 1096


Also, you are good at twisting words Michael.  After your several messages to me, all I asked was that you please stop sending me messages threatening me to be your friend.  I never said you could not respond to anything I post. You  made that up. 

I really thought things were about to get better on here.  Thanks for bursting that bubble Michael.  I hope you are proud of yourself.


dayn2nite2
Posted: Wednesday, March 22, 2017 12:19 PM
Joined: 6/20/2016
Posts: 3053


BlueSkies wrote:

Also, you are good at twisting words Michael.  After your several messages to me, all I asked was that you please stop sending me messages threatening me to be your friend.  I never said you could not respond to anything I post. You  made that up. 

I really thought things were about to get better on here.  Thanks for bursting that bubble Michael.  I hope you are proud of yourself.

To stop receiving his messages, go to your connections and under his name, click "Remove 
Connection" and you won't get them anymore (I believe).

Michael Ellenbogen
Posted: Wednesday, March 22, 2017 12:26 PM
Joined: 11/30/2011
Posts: 4244


As I said you misunderstood what I was trying to say but you did not give me a chance to explain. I am only pointing out that you are asking for feedback from others and I cannot reply back which makes it very hard to remember for me. But you are doing this on a thread I created. It makes it impossible for me not to reply.   

 

I will start replying to your issues julielarson. Thanks

 

Thanks so much for your concern dayn2nite2 but as a advocate I talk to anyone in order to help them. Part of my problem is my writhing does not always may sense so I do betterr speaking to folks. Many her know as I have spoken to many and helped many caregivers. 


dayn2nite2
Posted: Wednesday, March 22, 2017 12:29 PM
Joined: 6/20/2016
Posts: 3053


That's fine for you, but again nobody can be sure you are really who you say you are on the internet.  That's my whole point.

Everyone should be careful who they connect to privately by email, message or phone.
julielarson
Posted: Wednesday, March 22, 2017 12:39 PM
Joined: 9/30/2015
Posts: 1155


daynNight, I totally agree with you on your points.. Thanks.
jfkoc
Posted: Wednesday, March 22, 2017 1:07 PM
Joined: 12/4/2011
Posts: 20707


ditto to dayn2nite...please be very cautious with the private messaging...be careful accepting an invitation and delete a person any time you have an uneasy feeling.

Please be especially cautious with private messaging. Many of us here rarely use messaging feeling that most things are best shared here because what is said can be useful to others... When I have used private messaging I have done so with the understanding that what I say will remain private....privacy being the point. 

Back to an old question...Admin has verified that yes, one person can have multiple accounts on here.  This has been suspected on all the forums at one time or another and yes, here recently.

There is no way to stop this but it is relatively easy to spot and when spotted usually brought out in the open for all to be aware of.

Disagreements are going to and have happened on all of the forums. They have been weathered undoubtedly because we are all linked together. I care deeply for everyone on this forum. I read everything you write, always learning. I know other CG feel the same.

You are the pioneers!

 


abeautifulwaytolive
Posted: Wednesday, March 22, 2017 2:41 PM
Joined: 8/17/2015
Posts: 86


Many who participate here have seen my mom on zoom or skype, or spoken to her on the phone, (and probably also heard me and my daughter in the background), know her to not only be a real person, but know that she is not anyone else on here, so why this controversy continues is beyond me (talk about beating a dead horse).  Those who were willing to make such a connection were rewarded with this real information. Those who didn't (out of fear and bias) spin their stories that they make up to delude themselves, this is part of the disease process (and should be medicated).  Remember, whenever anyone points a finger in accusation, four more are pointing back at them.  People are often guilty of what they accuse others of doing and you should beware of anyone who does not share their number or will not talk with you on the phone, or zoom/skype (as they are most likely to be alt accounts).

I do think that the election has affected people, because along with emboldening racism, classism, and ageism, it has emboldened another alt-right trait, fear.  This is what many who subscribe to the alt-right agenda of cleansing the nation (white upper class men only, and their child brides who have no rights), is a fear of everyone else who doesn't bow down and worship them. It is what makes them arm themselves or drive their trucks into protesters, killing them.  And it is this behavior that is being exhibited on the forum in these threads of fearing each other.

I live in a state that calls itself "nice," but this is a euphemism for being mean and cold. My mom used to say that you don't get to lynch a man one day (or be friends with someone who did, or support an agenda that would) and come to our house for dinner the next and expect that it will be ok with her.  I say it like this, I am not going to throw my daughter's needs aside just so you can feel ok about yourself. This will naturally put you on an opposing side if you do support what ultimately hurts my daughter and indeed, those with Alzheimer's.  And if you bring up hurtful alt-right agenda on here, you will be met with mama bear.

My mom is dead, if you cannot move on with your life (and live in fear that my mom's ghost is somehow in her afterlife wasting her time on those who hated her this much), shows that the problem is inside you.  With my mom gone, now you will be looking for another target (just as my mom predicted), because that is easier than working on yourself or being real and honest with yourself, that your fears are the problem and another human.

Being real in a fake world comes with costs, that those who live in fear avoid paying and so choose to be fake and lie to themselves instead.  I am proud to have been raised by one of the realist people I knew, my mom, and I can see how all four of us children are also real people (bearing our own costs of being real in a fake world).  The world needs more real people, as it is pretty lonely being real in a world of those who don fake masks and lie to each other and themselves. 

To Julie and blueskies, don't let the fake people on this forum get you down.  Create this forum the way you want it to be.  Build it and they will come.  Don't let those who do not have dementia stop you from supporting those who do.

 


TayB4
Posted: Wednesday, March 22, 2017 3:26 PM
Joined: 8/8/2014
Posts: 886


abeautifulwaytolive wrote:

Many who participate here have seen my mom on zoom or skype, or spoken to her on the phone, (and probably also heard me and my daughter in the background), know her to not only be a real person, but know that she is not anyone else on here, so why this controversy continues is beyond me (talk about beating a dead horse).  Those who were willing to make such a connection were rewarded with this real information. Those who didn't (out of fear and bias) spin their stories that they make up to delude themselves, this is part of the disease process (and should be medicated).  Remember, whenever anyone points a finger in accusation, four more are pointing back at them.  People are often guilty of what they accuse others of doing and you should beware of anyone who does not share their number or will not talk with you on the phone, or zoom/skype (as they are most likely to be alt accounts).

I do think that the election has affected people, because along with emboldening racism, classism, and ageism, it has emboldened another alt-right trait, fear.  This is what many who subscribe to the alt-right agenda of cleansing the nation (white upper class men only, and their child brides who have no rights), is a fear of everyone else who doesn't bow down and worship them. It is what makes them arm themselves or drive their trucks into protesters, killing them.  And it is this behavior that is being exhibited on the forum in these threads of fearing each other.

I live in a state that calls itself "nice," but this is a euphemism for being mean and cold. My mom used to say that you don't get to lynch a man one day (or be friends with someone who did, or support an agenda that would) and come to our house for dinner the next and expect that it will be ok with her.  I say it like this, I am not going to throw my daughter's needs aside just so you can feel ok about yourself. This will naturally put you on an opposing side if you do support what ultimately hurts my daughter and indeed, those with Alzheimer's.  And if you bring up hurtful alt-right agenda on here, you will be met with mama bear.

My mom is dead, if you cannot move on with your life (and live in fear that my mom's ghost is somehow in her afterlife wasting her time on those who hated her this much), shows that the problem is inside you.  With my mom gone, now you will be looking for another target (just as my mom predicted), because that is easier than working on yourself or being real and honest with yourself, that your fears are the problem and another human.

Being real in a fake world comes with costs, that those who live in fear avoid paying and so choose to be fake and lie to themselves instead.  I am proud to have been raised by one of the realist people I knew, my mom, and I can see how all four of us children are also real people (bearing our own costs of being real in a fake world).  The world needs more real people, as it is pretty lonely being real in a world of those who don fake masks and lie to each other and themselves. 

To Julie and blueskies, don't let the fake people on this forum get you down.  Create this forum the way you want it to be.  Build it and they will come.  Don't let those who do not have dementia stop you from supporting those who do.

 

Not endorsing; quoting in case it is deleted and then future comments don't make sense to the reader. 

alz+
Posted: Wednesday, March 22, 2017 6:05 PM
Joined: 9/12/2013
Posts: 3608


The boards were never before about "who is my FRIEND" and then being nitpicked for not being a good enough "friend". That is very much a part of other social media. It is not helpful here.

****

Beautiful - You must be in a very vulnerable condition and I hope you find some in person support for your broken heart. 

You do not have dementia. The boards are for exchanging helpful dementia related information with each other. The past is written, the future is open to what we put out there. 

I hope the other dementia sites where SUN shared her life story have been notified of her passing. If there is a memorial service you might share that info so we could send our messages there.

****

Iris is just taking a break. 

Reminder: having dementia makes it difficult to write their feelings in a way others can understand or to speak cogently. Cut some slack for each other. Politics or personality clashes be damned.

****

Dayn2Night2 - thank you for sharing the troll/fake persona information (regarding comments on political and news sites). 

I never thought my private messages were maybe being saved as evidence before now. Chilling effect.



ALZConnected Moderator
Posted: Wednesday, March 22, 2017 6:18 PM
Joined: 8/17/2011
Posts: 350


 This thread has been locked by the Moderator.  It is off topic and negative.