The Alzheimers Association site has become just to complicated for me and I am really thinking

Michael Ellenbogen

The Alzheimers Association site has become just to complicated for me and I am really thinking of giving up. 

 

I have asked for help from moderators and they just ignore you. That don car one bit about those with dementia and the caregivers. This change was a disaster and they are maying changes by the seat of their paints. Sadly most of the changes requested are so easy yet they make it sound so complicated. I also don’t agree with all of the changes being done on the fly without real consensus from many. I just don’t get it as to why they treat us so poorly and they just don’t give S**T about us. They talk to us like we are the stupid ones.

 

I am amazed that it took 3 days to make a change that came out as a disaster. They did not even ask for feedback or even share with us on what the changes would look like. They just don’t care.

 

I am still trying to figure out what to do and will let you all know within a week or two. I so hate to give this up but I need to stop getting aggravated every time I try to use it.

 

Iris L.

Michael, does Us Against Alzheimer's have a message board like this one?

What about Memory People on Facebook, is it still operating?

Michael Ellenbogen

Us Against Alzheimer

They don’t have anything and I don’t do it for me but those who needed the most at AA because they don’t do the job to help the people here.

 Memory People 

is corrupt or at least it was many years ago.

 

 

I don’t have the patient to try to learn new things as It never sinks in any more.  

 

Iris L.

Michael, just keep doing what you have been doing, and try to ignore the points and etcetera. Keep posting!

Thanks for the info about those two sites. It will be extra hard for PWDs now.

Michael Ellenbogen

Hi Folks,

 

I would like to thank all of those that supported me over the years. I have given this a lot of thought but I can no longer stay on this site that does not care about people with dementia. I am referring to the Alzheimers association.

 

I have lost over 850 contacts that I had. For those who believed in me I had helped so many on this site over the years. So many had reached out to me privately and I was usually able to help them in some way. I have helped so many here in so many ways. In some case I had reached out to some who were at the end of there sanity and not knowing what to do next. I was able to get them some needed respite with the help for some great friends who offer them resources and needed respite.  In one case we even sent someone on a vacation for 4 days to a great resort while someone took care of their loved one. There were great people out there helping me to help you all. They did not even want me to safe where the money came from. There are some real good people in this world. Don’t you forget that.

 

There is a small possibility that my wife may take this over but not sure that will ever happen. So that leaves it up you all. For a while I will be able to share some great information that I great access to. But in order to do that I will need to have two volunteers to step up that I will share direct emails with you and it will be up to you to share the information on the web site and to continue to help others. So please reach out to me privately and I will make sure to get the information to you going forward.

 

I will still leave this account open and hope if someone send me a private email it will still go to me. I would appreciate if some one can send a test message so I know that will work. I will still be available to those who need to contact me. I will no longer be reading this site.

 

Thank you all and I wish you the very best as you continue to go down this road. I do hope more of you become advocates for the cause because those of us with dementia can not do that and we need you to drive the change.

 

Iris L.

Michael, I am so sorry to read your message, but I understand totally. We can do only so much, and you have done quite a lot for many years.

I am angry too, that you lost all of your contacts here.

It may be time to move on and engage in a different mode of help and advocacy.

I will message you, let me know if you receive it.

Edit: Michael, your Profile is "Private" so I am unable to message you from this platform, and no one else will be able to.

Iris

Michael Ellenbogen

Thanks so much Iris. I changed the setting. Give it another try.

 

I had only made it private because it said all could see it publicly, not just the people here who are singed on.  But If I have to make my self vulnerable I will have to do it. 

Iris L.

Michael, I sent you a message. Let me know if you received it.

Michael Ellenbogen

I got it and sent something back to you.

Michael Ellenbogen

I have now tested the email function and it does work for those who still want to reach out to me.

 

I also now have one volunteer I will be sharing information to by private email. I still need one more person to step up so they can work on getting this information out. I need one more volunteer. Thanks

BadMoonRising

Michael, I am sorry to read you are having so much difficulty with the new format. I am finding it to be much more user-friendly than the old version, although admittedly, I haven't tried searching for posts by specific members. All of this is to say, in a kind way, I hope, that it is possible that changes in your brain may be making it especially difficult for you to learn new things. It happens, right?

I'm sorry I can't volunteer to help you share information, as I have my own row to hoe, but I want you to know your assistance has been much appreciated. BMR

Michael Ellenbogen

After much aggravation trying to change my profile AA finally figured out how to change their complicated system that they also did not know how to do.

 I am great full that two volunteers have steeped up to continue to share information I get with you.

 It saddens me to say good buy to many of you as I will surely miss some of you.

 Just remember to those that come her for help. While it may not be what you want to hear or may even think its awful comments. Please think about it as it could be the right think if you just let it sink in over time. If you are not willing to listen then you probably are the wrong person to ask for help. I was able to always help those that wanted. Sadly, may were so stubborn and because of that their loved ones continue to suffer.

 As I always said you have the power to make it better if you just get the emotions out of the way.

 This is my last comment unless you reach out to me by the private email function.

 Thank You all and wish you the best in your journey.

 Michael Ellenbogen - International Dementia Advocate & Connecter

SusanMcc

I understand. I just registered on here and I was recently diagnosed with early onset dementia at the age of 57. I would try to hang in there. There are just not enough support groups for those who have dementia. I just registered and I came across your. I really wish I had found the site a few months before.

klucey

This group is helping me a lot