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by Michael Ellenbogen, living with dementia

mICHAEL_ELLENBOGEN_SPEAKING

What is wrong with this picture?

I am constantly reaching out to many who do some kind of work for the dementia world, ranging from healthcare workers, certification organizations, Pharma, government agencies and technology companies. They all are working to improve the lives for those living with some form of dementia like Alzheimer’s. Many share with me there ideas and give me reasons for why they have made some of their decisions. They all sound very good if you are a caregiver or an expert in neurology. To me some of the ideas sound like they are being done for the wrong reasons, or have even failed to address the real issues that people with dementia face. Most of these people are really proud when they first reach out to me.

Unfortunately, many times after our first discussions things go south as I point out many negative issues with the product or policy they had created. Many fall short of the potential. They don’t always get it because they seem too feel they have created something so great with the help of other caregivers who had to deal with those living with dementia. They feel very confident they were able to get it right because they received the right feedback.

They all seem to be surprised when I tell them they are wrong in their thinking. I ask them how many people living with dementia helped in the process. The look on their face or the dead silence seems to tell the story. They all say they have not. I asked them if they had even tried to find someone with dementia to help them, and they say the thought never even crossed their mind. To be very honest with you I am totally shocked that these folks never even gave it any thought. If you are going to build something or speak about a specific topic would you not first reach out to the experts in the field for their advice and thoughts?

I consider it a big problem when you have people telling us what we need when they themselves are clueless. I do not understand why they do not feel people with dementia are needed. In my opinion these people and organizations need to change there thinking if the truly want to help those living with dementia.

 I recommend they have at least one person involved –

at minimum

But if you really want to do it right one will have 3 to 9. It is important to have diversity and know the person is still capable of contributing. I personally cannot understand why the companies would not have included people with dementia as part of a board if the organization was geared to dementia certifications. Would you not think it would be important to get the view from a person that would be directly impacted by the decisions being made?

I believe part of the problem is because they are biased and also because of the stigma surrounding people like me. They all think that the minute one gets diagnosed a switch turns on and they no longer can function. They think about some person who is laying in some institution no longer capable of thinking or doing things.

Well I have good news

We may be like that in our last year but many of us have many good years left where we could still be productive just not as good as we once were. In fact, with the proper help from society we could be able to lead a fairly normal life. This thinking on others needs to and must stop.

Don’t send us to the grave sooner than

our disease calls for

We need to put our crazy thinking aside and figure out a way to tap into all of these folks living with dementia to truly help the future. As a person who was a very high-level manager and very successful I could have never understood some of the things I see in myself today. In fact as I write this I still cannot understand it. But I bet sharp people like doctors could ask so many questions of me now which would lead to a tremendous value in creating new text books of what it real means to have dementia.

Sadly, most are a failure because it was written by someone who did not understand the thoughts of one with dementia. I can assure you that your interpretation is different from mine and others based on previous discussions with others. So let’s bring the right change by including the real experts – those living with dementia.   The best example I could give for this is an organization in the US, Dementia Action Alliance – DAA  which has created a board of 9 people with dementia. Now that is progress.

 See Additional Resources Below for

Dementia and Caregiving

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Dementia Chats – Where our Experts are Diagnosed with Dementia.

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Listen and Watch Paulan Gordon, Diagnosed with Vascular Dementia Below

As She Help Others

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 Take Advantage of the Discount Available to Alzheimer’s Speaks Community!

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Learn More About This Amazing Film About Dementia & Family Dynamics

Contact Lori La Bey To Find Out How To Host A Screening!

 

 

 

 

 

 

 

Kids As Caregivers

9 Year Old Leads The Pack

At 2pm EST, 1pm CST, 12pm MST, 11am PST and 7pm London Time

Click Below to Listen Live or later at your convenience

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On Friday, Alzheimer’s Speaks Radio is thrilled to have on the show Hailey Richman a 9 year old caregiver for her grandmother who has Alzheimer’s Disease. She has created a web blog to offer support for kids that are acting as caregivers. She also assistant director for Puzzles To Remember (a 501(c)3 charitable organization, which was created by Max Wallack.

haileyHailey’s Contact Information

Web Blogwww.kidcaregivers.com

FaceBook page “Kid Caregivers”  – https://www.facebook.com/Kid-Caregivers-226484437699541/?fref=ts

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Puzzles To Remember: www.puzzlestoremember.org

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Additional Resources

The Last Dementia Chats Session is Below

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  Contact Lori For Your Next Conference, Training

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Sign Up Now and Be Prepared if Wandering Would Occur

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Dementia and Anger on Dementia Chats

May 24th, 2016, We discussed with our panel of experts diagnosed with dementia about their anger with dementia.  We talked about how and why they are mad at the disease, how anger shows up in them and their Care Partners as well as how they try to deal with and control their anger  and how anger is different now.

Our Expert Panel Today, Each Living with Dementia Are:

Harry Urban
Paulan Gordon
Michael Ellenbogen
Truthful Loving Kindness
Brian LeBlanc

Facilitator:
Lori La Bey, founder of http://www.AlzheimerSpeaks.com

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Dementia Chats™ was created with the intention to educate people living with dementia; their care partners both family and friends as well as professionals and advocates.  It was created by Lori La Bey founder of Alzheimer’s Speaks whose Mother had dementia for 30 years. Lori also provides Keynotes, training and consulting.

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Find Out How To Host This Film – Contact Lori La Bey

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Sign Up Now and Grab Your Discount!

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I Hate You

Here is an article by Brian LeBlanc I think you will enjoy/

Alzheimer's: The Journey

HATE! It’s a very strong word, a word I hardly ever use, however, there are certain instances when the use of this word is appropriate.
This is one of those instances.

HATE is defined as:
feel intense or passionate dislike for someone or something

I will say that my hatred is NOT directed towards a “someone” . . .
it is a some “thing!”

With that out of the way . . . I HATE YOU!!!
I don’t just hate you, I hate you with a passion. I despise you!
I hate the sound of your name. I hate what you do to people.

You’re a thief, a thief of the worst kind.
You rob innocent people, not of material things, but of their most precious memories. You take away their ability to reminisce, to memorize, and not recognize the faces of their spouse, their children, their grandchildren, and friends. You…

View original post 486 more words

Alzheimer’s Speaks Radio

Dementia Care – I Love You, Who Are You?

Live on Tuesday, May 24th, 2016

2pm EST, 1pm CST, 12pm MST, 11am PST and 7pm London time.

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Today we are lucky to have Patti Kerr a Certified Alzheimer’s Educator, keynote speaker, former Alzheimer’s caregiver and the author of “I Love You, Who Are You? Loving and Caring for a Parent with Alzheimer’s?”

Contact Information For Patti Kerr

WEBSITE:  www.pattikerr.com

FACEBOOK:  I Love You, Who Are You?

Linked In: Patti Kerr

Additional Resource Information:

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Event Planners Click Here                       Contact Lori La Bey

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Join Dementia Chats™

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Tuesday Morning, May 24th

11am EST, 10am CST, 9am MST, 8am PST and 4pm London Time

To Enter This Meeting, Which Is The 4th Tuesday Of The Month Click Below

https://zoom.us/j/754961834

Or Dial To Listen In: +1 646 558 8656 (US Toll) or +1 408 638 0968 (US Toll)

Meeting ID: 754 961 834

International numbers available:  https://zoom.us/zoomconference?m=_eEg53ol0nKrCvwkJL7IC976NtUtxewq

Voices of Those Diagnosed with Dementia

Dementia Chats™ was created with the intention to educate people living with dementia; their care partners both family and friends as well as professionals and advocates.  Our Experts are those diagnosed with dementia. We have been doing this series since July of 2012.

Our Last Session is Below

Contact Lori For Your Next Conference, Training or Screening of “His Neighbor Phil”

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 Click Above To Watch The Trailer

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Children Caregiver –

What a Great Musical Video

Daylight(  DAYLIGHT.).Bring in the sunshine

Make me smile.(MAKE ME SMILE)……Stay for a little while

I’m so glad……..you came by today

I don’t get……..much company these days

I’m old, and I lose my way……..yes I lose my way

 

Sunshine(SUNSHINE)……..Bring in the daylight

Make us smile.(MAKE US SMILE)…..Stay for a little while

It’s so good……..to see the both of you, (Grand Ma, AND Grand Pa)

In my life…….there’s always time for you

I’m young, and you can teach me.  So much to teach me

 

Bridge

If only for a moment, I could see the world through your eyes ( I     am told )

( Once a man, twice a child )

Those eyes would be (at least for me) the windows on a very special soul

(Once a woman twice a child)

 

Daylight(DAYLIGHT)……Bring in the sunshine

Make us smile (MAKE US SMILE)…..and stay for a little while

We’re so glad you came by today

We don’t get much company these days

We’re old and we lose our way….. Yes we lose our way

 

Outro

So Long…. I’ll see you again

Thank you for the time we’ve  spend together…. X 2

Daylight (DAYLIGHT)bring in the sunshine.

Make us smile (MAKE US SMILE)  and stay for a little while…. Stay for a little while …. Stay

This Song was written by David Light and Bakhus Saba.

It’s all about seeing children connecting with people with Dementia.

It’s Down Right Powerful!

See Additional Resources Below for

Dementia and Caregiving

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 Take Advantage of the Discount Available to Alzheimer’s Speaks Community!

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