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.

 

ladyzetta

Dear Michael.

Please hang in there, a lot of us are trying our best to understand this change. I hate it but each day with the help of the other members I learn something new.

I am not learning anything from the moderators, I don't think they even understand the mess they have made.

You have got this, just hang on. Hugs Zetta

Lane Simonian

Wish they had sought all of our input before making these changes.

Keep posting important information whenever you can.

CanyonGal

I have handled several migrations from on platform to another and it is hard on everyone. There may have been several reasons for the upgrade but support, FAQS, seem to be building on the fly. Granted, volunteers may be doing what they can in their time, and other system tweaks may require approval.

Hang in there, changes will occur, things will improve, and everyone will adapt, it's just going to take awhile.

Iris L.

People don't understand how hard it is for PWDs to "adapt" to changes. That is actually the meaning of having dementia--being unable to adapt. Or, at least, having great difficulty in adapting.

Michael, I have learned quite a lot from you and one very important thing I learned is how to deal when bad things happen. You told me that you keep going, because there are so many people who need your help.

Well, a lot of people still need help. The help you give, where else will they get it? You and I are the only regular patients who post. If it's hard for us, how much harder is it for the others? I think most of the patients are unable to sign on with new passwords. They have been lost.

I feel very bad about being manipulated, but I am still going to try to help whatever patients can manage to find their way back here.

But I cannot, in all honesty, continue to encourage patients to view this as an online support group. They can post questions and maybe get an answer.

Michael Ellenbogen

You folks make is so hard to give this up. I am still trying to work this out. I can assure you I will not be one to delete that account and cause more issues. I have never come here for me. I just did this so I can learn from many of you so I could be a better advocate for the cause. Much of your pian drove me to do more then I could at times, but you were an inspiration to me to change this world.

 

Because I was so lucky I got to meet with the best of minds in the dementia world and because of that I kept coming her to help pass on much of the knowledge. One should as Why AA does not do that ore when they do they send it to you 2-3 weeks old. Many times they attend the same meetings.

 

If I do leave, I promise I will find someone to take over my account so they can continue this here. But I will need some volunteer for that. 

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.

 

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

mommyandme (m&m)

Im sad to see your néed to leave. I have a question if I may, please forgive my ignorance.

Couldn’t staying here and working through these challenges be helpful to you on your journey? The aggravation isn’t helpful, lm sure. I hope you don’t take the forum change personally against you or any of us. As you say, AA may not care but we do and we need each other. This is still a good place to connect and receive support even with the techno challenges, at least for me. Our paths are different so of course I cannot speak for you. Hope you will continue to provide the support we all need without a proxy but I’ll take help however I can.

Thanks again for all you do.

Michael Ellenbogen

In most cases this forum was never about me getting help other then learning some of the stories to help me do better in my advocacy. I hope I will never need help from this is because if I did I would be in serious trouble. 

sunnydove

Hi Michael. I haven't been to this site in about a week or more because I hate the changes. I even removed the bookmark in my browser. For me the most annoying part is the separation of caregiver into subcategories. So unnecessary and time consuming for a group of people that is already overtaxed and short on time. It's just too much of a pain. Shame because I used to get some good advice here. I'm sad it's become such a pain for you because you have been so involved and committed to sharing information. I hope you are able to find another source of support online. I haven't searched for an alternative site but maybe I will now. I'll let you know if I find something.

sunnydove

There are quite a few reddit subforums you might enjoy.

https://www.reddit.com/r/Alzheimers/

https://www.reddit.com/r/AlzheimersGroup/

https://www.reddit.com/r/dementia/

Also some facebook groups:

(20+) Dementia family, friends & care partners | Facebook

(20+) Molly's Movement | Facebook

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

ladyzetta

Dear Michael,

I hate to see you leave, because you also have the power to make it better, if you get the emotions out of the way. I am saying this with kindness, Hugs Zetta

Iris L.

Not speaking for Michael, but in the past he has pushed forward despite receiving major pushback from members here and authorities. It may be that he no longer can keep up. He started out by saying the site has become too complicated for him. To tell the truth, it has become too much for me, too. People just don't understand what it means to have cognitive impairment. It takes a lot of effort to do ordinary tasks. I used to spend about an hour or more reading every post and responding to what I could respond to. Over the years, I noticed that my responses became less complex. This is because my thought processes were declining and my written speech was deteriorating. Even now, after the changes, I find it more difficult to keep up because a thread opens up at the last post, and I don't have any idea what is being talked about, because I don't carry the memory of the preceding posts. I could start from the beginning and read every post to catch up, but that's just too much for me to do with so many threads. I have other things to do, other things that I also struggle with. Unlike Michael, I don't have a spouse or family to give me a single shred of help. I have to do everything by myself. If I get disoriented and turned around by reading posts that confuse me, nothing will get done. I cannot keep risking this. In the beginning, PWDs used to post on the caregiver boards. Not many, but some. Then there were just Michael and me, now Michael will be leaving. I'm sorry he is leaving, because he was a great encourager to me. But I fully understand his motives.

Iris

Emily 123

Thank you Iris and Michael, your input here has always been valuable.

I don't care for the new format myself. I work within Epic healthcare charting, which has its own challenges, so I don't think it's just a case of getting used to a new version. The other format was much easier to navigate and engage with. It's a shame because it seems like people aren't responding to posts as much, and interaction seems less. That it's actively driven users off the forum should be reviewed by the site managers.