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Michael Ellenbogen
Posted: Thursday, November 12, 2020 8:53 AM
Joined: 11/30/2011
Posts: 3552


 https://teepasnow.com/wp-content/uploads/2020/11/Dementia-Friendly-Vision-Expanded.pdf


Iris L.
Posted: Thursday, November 12, 2020 1:20 PM
Joined: 12/15/2011
Posts: 16705


I scanned your report, Michael.  You put in a lot of effort. These ideas are great for the PWD with a lot of support and a care parter.  


Iris


alz+
Posted: Friday, November 13, 2020 3:09 PM
Joined: 9/12/2013
Posts: 3579


glad I checked in today. the document is impressive. I could not read it completely today so I saved it. I found through out the pages all EXCELLENT points.  It is a treasure in large part because it is written by someone who has dementia. Well done!

The part about hospitals - now we have to go in alone, no one for back up or checking rechecking nurses.  My last hospital visit had nurses NEVER give me my home meds for 7 days, I figured they must know what they are doing. I was often challenged with "You seem to remember things, I don't think you have Alzheimer's"... and then I witnessed a woman with dementia in my room being assaulted and screamed at, bullied and hurt, knocked out and left on her bed without even a blanket because she offended a nurse earlier. That is still a crime I want to push hospital about but can not on my own.

****

Environment that suits the person is the treatment for Alzheimer's. Simple, comfortable, safe.

I am pretty content here in a trailer park for over 55. I have not been able to drive for 5 years now. I walk inside the park and down 1 road. I do yoga. I use cbd oil in morning and now a thc oil at night and sleep is greatly improved. I take B12 complex, D, Zinc, and Vitamin C.

Being around people drains my cognitive abilities. Talking exhausts me. Neighbor cats come over and I pet them. The mask and lockdown is harder on most people than me.

I have some potted plants outside I tend. I have a tv and Netflix. I can read some days (I taught myself to read in a different way, many times re-read parts, no longer frustrated by that). I cook meals to last 3- 5 servings.

I see my dog once a week when friend brings her with some groceries. Vision and hearing loss are worked around. No managing any financial stuff, no directions. I plan to let the lack of desire for food take its course as things progress. 

My biggest help was learning to be kind to ... problems in thinking. If I forget what I was doing, where I was going, what I wanted to say - I take a breath and tell myself "Maybe it will come back later." It often does. If I can't sleep I pass the time doing whatever I want. I learned to be soft about impairments. It lets me remember my brain is not my Self, and my mind observes what the brain is doing. Memory is about recall and holding a thing over time. I doubt memory is lost, it is just difficult to retrieve information sometimes. The idea we become empty shells is not my experience.

I spent this summer learning how to live here. The virus rules are easy enough to follow.

Environment is 90% of living well.  The CBD oil still works.  The illness is not so bad minus the anxiety and fear of doom. I am not anxious now, I no longer feel this ends in doom. 

People around me openly say harsh and negative things about other residents with Alzheimer's.  I told people I have brain damage.  None of their business.

much love, have courage

Ps: 20 - 30 minutes of yoga has profound effect on my cognition. The walking a mile every day also helps a lot more than I expected.





Iris L.
Posted: Saturday, November 14, 2020 9:37 PM
Joined: 12/15/2011
Posts: 16705


alz+ wrote:

 

****

Environment that suits the person is the treatment for Alzheimer's. Simple, comfortable, safe.




I totally agree!  I'm still in the process of transforming my home into the healing oasis I want it to be.  It's hard for me because I don't have the strength or energy to function.  But I'm working on a new treatment plan, and I seem to be reponding.  


Trailer life suits you, alz+.  Good for you!  


Iris

 





Michael Ellenbogen
Posted: Sunday, November 15, 2020 8:43 AM
Joined: 11/30/2011
Posts: 3552


Thank you all for your nice comments. While this is an old document it has lead to many changes all around the world. This was actually the second addition.  I will never forget about 8 year ago  i had received a call from the ambassador of Monte Carlo or Morocco. Sadly I don’t remember which one. It has now been shared with most world leaders. The best part early on this is the document that started it all for AARP which has just been amazing on what has come out form them and continues today. I have planted so many seeds around the world and they are many that is starting to grow from them. Don’t ever underestimate on what you can do if you try.

 

It so good to see you here Alz and so happy for you that you have been happy.


Iris L.
Posted: Sunday, November 15, 2020 1:28 PM
Joined: 12/15/2011
Posts: 16705


Michael, I read your entire document this morning.  It was well thought out and addressed most of what's important to PWDs.  You mentioned stigma and that PWDs should not feel hesitant to disclose about having dementia, because it is a disease.  


For PWDs living with a family member, this might be okay.  But for PWDs living alone, disclosing that one has any sort of cognitive limitation or impairment in mental functioning to the public, is an open invitation to be taken advantage of and otherwise abused.  It is tough enough being older because there are always those people who want to scam senior citizens.  


At the same time, there are not enough professionals who work with older adults who are aware of non-verbal evidence of calls for help.  I'm thinking of things like poor financial management or poor housekeeping.  I have given up expecting help from local professionals.  I learned what I need to do from the members on these boards and other online sources, and I've figured out my own help.  


We are all fortunate to have you as our advocate, Michael.  


Iris


Iris L.
Posted: Sunday, November 15, 2020 5:02 PM
Joined: 12/15/2011
Posts: 16705


Michael, you mentioned missing being able to drive your boat or to have deep conersations.  I also can no longer do complex activities, but I don't miss them.  I feel like they would be like opening up a Rubik's cube, I would only get muddled after a few turns.  I have enough challenge dealing with ordinary works, such as learning the features of my cell phone and my new car, which I got at the same time you got yours.  I'm glad we are back on standard time because I never figured out how to change the clock in the car.  What I already know I can still do, but new tehnology is a challenge for me.  That's why I hold on to my old stuff.  


Iris