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Rules To Consider For Posting In Forum
Posted: Monday, September 7, 2015 10:02 AM
Joined: 7/24/2015
Posts: 3020

....because with this damn disease we have to do things so darn manually!

I don't care to change anything here in the forum...only to perhaps make it a little easier for us. I was thinking about Michael's question (in another thread) about whether we can not take offense at things.

What I have sorted out...the long hard way. And this is just for us folks.

PWD have less ability to manage their emotions...meaning, we are quicker to have a negative response to in response to negative postings/emotions. We also have a lot at stake, so we naturally have an added intensity to our postings. All meaning, we need to manually disengage ourselves emotionally from what is going on.

PWD probably cannot help but take offense at some of the things is just our whole lives at stake here, so it IS personal....but then, it really is not. This creates wounds in us. It is like getting too close to the fire. That doesn't make us bad...or mean we are doing something is just the nature of the way dementia is. Meaning, we need to manually and purposefully step back and consider all sides to the issue.

There is probably more I was just thinking...but I just forgot (sorry).

We are earlier on than most of the people CG's are taking care of. Although, many CG's have stage 4-5 people too...and I am stage 5. But most have stage 6+. So all conversations we get into with them are almost always apples and oranges. We are not talking the same thing at all. But that can be hard for us PWD to remember or figure out very quickly. So maybe putting a post-it up on our computers with a reminder about that.

Also CG's are doing the best they can with mostly false information. It is not really their faults that the information available to them is false. It is just what there is. We need to be as patient with them as we'd like them to be with us. After all, we are all still here so clearly G-d isn't finished with us yet. That old saying, "Please Be Patient, G-d Isn't Finished With Me Yet."

We have to find a way to bridge this gap...between the false information and practices out there and us.

Anyways...I am recognizing now that I am not making a whole lot of sense and not tying my thoughts together well, so I am going to take some time to let my brain recharge.

Michael Ellenbogen
Posted: Monday, September 7, 2015 12:21 PM
Joined: 11/30/2011
Posts: 3468

I hear you and right in many ways. That way to me I believe the profiles we all have should be better used to explain all that but most dot have much. I also cannot remember thing about these folks as you folks do. Hell I cannot even keep you folks starting and I try so hard at it and fail.