Michael Ellenbogen

ButterflyWings

Dear Michael, I hope you are doing well and that this will be a wonderful week for you. Can you please share any information on the Emergency Room protocols or guidelines you worked on in 2021-22 I believe? Or if they are posted somewhere online could you provide the link or other direction please? Thank you!

Iris L.

Michael has retired from posting on these boards. I don't know if he is still reading, but I doubt he will respond. I don't recall Emergency Room guidelines from Michael, but others have posted. Basically, don't leave PWD alone. I'm sorry I cannot give more.

Iris

Lane Simonian

I am in contact with Michael on a semi-regular basis and try to post at least some of the information that he receives here. I could ask him this question, although it might not be something that he can easily find.

ButterflyWings

Thank you Iris, yes that should be, but is one thing that is often not allowed without intense advocacy. Just one example, I have previously been refused access to stay with DH in ER for a couple of hours at least, until I created a major situation and they decided they had better let me back, to be with him. But 7 hours later, we just discharged and went home because the subtle retaliation after my escalation, meant we were left all that time with little to no attention for him, not even a cracker or juice for his nutrition much less hydration etc. In a dementia-friendly strategic plan in process, they and we need to know what the latest gold standard for ER protocols would be. I know Michael helped work on that.

Thank you, Lane, yes please. He worked on a national project I recall, helping analyze and establish ER protocols for PWDs I believe. I am not finding any posts prior to 2021 using the search function on the new site. Hoping I did not miss the opportunity while away, to preserve important posts I just assumed would always be accessible.

As mentioned above, there were major, major breaches in an ER experience with my DH immediately prior to his initial hospice enrollment, and that was not the only time people did not even exercise common sense in that "emergency" setting. I just did not have the capacity to respond to Michael's request for participation at the time. I would like to review (study) and then share what he helped put in place in this regard. PWDs and caregivers have rights that are being violated at the most risky and vulnerable points in their care and it should not be left to continue.

Please give Michael my regards. I recall he said it was getting harder for him to post and follow things here. He has done so much for fellow PWDs and us all. I often wished my DH did not have anosognosia, so they could compare notes and possibly work on some of the projects together. DH would have liked that. I really hope he is at peace and that he and his DW have all the support they need. Thank you again for contacting him.

zauberflote

@Lane Simonian I'm going to miss Michael here. Please give him my regards also. Thanks!

Lane Simonian

Butterfly Wings, if you don't mind I will share your complete posts with Michael, so that he knows the entire context. He did send me new information on retaliation against dementia patients which I posted a couple of weeks back.

https://nursinghome411.org/retaliation/?emci=ac2febd0-490a-ee11-907c-00224832eb73&emdi=77f0912a-db0a-ee11-907c-00224832eb73&ceid=9496127

I know he worked on this national project, but not sure if it includes whay you are looking for.

https://aspe.hhs.gov/national-plan-address-alzheimers-disease

It is terrible the way people with dementia are sometimes treated. It should not happen in this country or any country for that matter.

Zauberflote and Butterfly Wings, I will let Michael know that you miss him and send him your best regards. It is getting harder for him to keep track of things, and the change in format in Alzconnected indeed made it harder, so that he cannot come here any more.

ButterflyWings

@Lane Thank you so very much. I do think it may be in this document. Thank you! Yes, of course feel free to share any of my posts with Michael. Yes, I can imagine the change in format here made it much harder to navigate. I am so sorry for that. Reiterating, Michael Ellenbogen is a true treasure for people with dementia, and their caregivers. He did so much that I'm sure many are not even aware of, to advocate and to share his own experiences and beliefs. I don't know the half of it, but what I know, is significant, impressive and appreciated. How important that is, to have people take the risk to speak out and raise issues that many just don't give a second thought to. I know I did not; not because I had anything at all against people with dementia, but because I just had no history with the dementias before my DH so I had no clue. It just was not on my radar, and he has worked to change that.

And for Michael to work so hard given his own diagnosis and progression, to make improvements in policies and situations for even 1 PWD is important, much less many thousands (or more) in reality. I wish him only the best. He surely will be missed in this forum. I learned a lot about what my DH might be experiencing from Michael's freely sharing. And the research and advocacy, well -- congratulations, sincere thanks, and well done!

Iris L.

Michael was involved in Dementia Friendly America (dfamerica.org). They produced an Evaluation Guide for communities to make dementia-friendly changes. Perhaps this is what you were thinking of? There is a nice video of Michael on that website.

Iris

ButterflyWings

Thank you, Iris! I will take a look. It was specifically emergency room protocols that he reached out to survey us on regarding any experiences if I recall correctly. Seems like it may have been mid to late 2021. I did find a relevant paragraph in what Lane sent. I will check this link too. Great to have, regardless.

ButterflyWings

Iris - I found this at the Dementia Friendly America website you linked. Sharing this outstanding work. Thanks!

 "Youth Engagement in Dementia Friendly Efforts" - Videos - Viddler

Lane Simonian

ButterflyWings and zauberflote, I passed along your kind and deserving words to Michael. I know that he will appreciate them. I will pass along any information and messages that he may have.

It is sad that so much information from the past iteration of Alzconnected has apparently disappeared into the ether. I would have saved much more than I did, if I knew that was going to be the case.

SusanB-dil

A lot of us do miss Michael. Glad you are in touch with him, Lane.

and I also did not know that such a wealth of information was going to just disappear...

Lane Simonian

Michael said thank you for the messages and that he should that if someone sends him a private message it should be passed along to him (I am guessing through the private message feature on Alzconntected).

He also send me this information on improving emergency care for those with dementia.

https://gearnetwork.org/about-gear-2/

ButterflyWings

This is what I was looking for!!! Thank you both!!!