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Archive for the ‘Advocate on Steroids for Caregiving’ Category

Alzheimer’s Speaks Radio – Another Dementia Friendly Initiative

Join Alzheimer’s Speaks Radio Today

Learn About Another Dementia Friendly Initiative

030315 ASR MEmory MAtters

Click Above To Listen

Live Today at 11am EST, 10am CST, 9am MST, 8am PST and 4pm London time.

Or listen later at your convenience.

Alzheimer’s Speaks Radio™ believes in giving voice to those afflicted with the cognitive impairment and their care partners while empowering them to live purpose filled lives. Our goal is to raise awareness, give hope, and share the real everyday life of living with dementia. We look forward to you joining us for great conversation, learning, and laughter as we maneuver this roller coaster called memory loss.

Edwina Hoyle Headshot (2)Today will will hear from Edwina Hoyle about a Dementia Friendly Initiative started by Memory Matters.  Memory Matters is a community-based, non-profit organization which strives to be a center of excellence for persons with Alzheimer’s and all forms of dementia and their families.  They provide daycare programs, support services and education in a compassionate and dignified manner.

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edwina purple angel kit logo

Join the conversation

Tell us about your dementia friendly ideas and projects!

Us the Chat box or call in live at  (714) 364-4757

 For more information on dementia and caregiving

visit Alzheimers Speaks resource website below.

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Full Circle – The Cycle Of Death and Life

Full Circle -

The Cycle Of Death and Life

2013-04-18 07The loss of a brilliant woman who lived life beautifully, even when dementia knocked on her door over 30 years ago.  Mom I so miss you and thank you for being in my life.

One Year Later

I never expected my life would be so impacted and drastically change due to illness, any illness.  I never really gave it thought to be honest.  I was too busy living my own life.  Those kinds of things always happen to “others.”

Then one day, none of us really know which day, dementia knocked on my beautiful mother’s door.  As always my mother open the door and greeted the stranger with grace.  Not knowing, not judging, just interested in what was before her. And soon as she watched and listened closely, she figured out what this stranger had brought into her life.  Initially, she did not share her findings with anyone, not my dad.

As time wore on, she could no longer hide or be in denial of the guest who came knocking.  Things were changing and impacting her life. They were impacting others lives too. Independence as she knew it was gone.  She couldn’t remember things.  She had difficulty completing everyday routines.  Driving stopped as she was terrified of getting lost or hurting someone. She withdrew socially, fearful of misspeaking.

Others started to notice the changes too. Many friends and even family reacted by pulling away not understanding or not interested in learning about why the changes were occurring.  As a one of her primary care partners, I must also say I was not good in the beginning with being honest with others as to her diagnosis or symptoms.  I think this is common as care partners are so worried about people rejecting them for being ill.  We disguise our nondisclosure by saying we are “protecting them” or “helping them maintain their dignity.

Bottom Line -

No One Should Feel Less Of A Person Because They Are Ill

In a perfect world, no one should feel less of a person because they become ill, but as we all know there is no perfect world.  I found by hiding the disease it created a false world.  One which frustrated all of us.  There was no true understanding. Authenticity was lost.  There could be no honest compassion as others were not allowed in.

Like in any relationship when trust is gone, the relationship changes.  We may not know why but things shift and usually that means breaking apart or falling away from one another.

Through the lack of understanding and the loss of compassion I saw, it changed my life.  This horrible disease ignited a passion in me to make life better for not only my mother but any one, anywhere in the world who wanted to believe better way of living with dementia was possible.  This was the start of a beautiful journey for both my mother and I down the road of dementia.  As mom always taught me from childhood …

Always Be Prepared

And so I tried my very best to be prepared for just about anything, anytime.  To have alternative plans, to be spontaneous and be open to new ways.

Living with dementia gave all of these teachings a new depth and meaning.  Each wrapped in unconditional love and acceptance.  It was no longer about being prepared to control things as much as it was to be prepared to find joy and peace and to learn to create it in any environment at any time, no matter how crazy and out of control things may seem.

The Shift In The Tornado

aging_dementia_tornado_giftDuring this 30 year journey with mom and dementia there was a shift in the tornado.  Instead of feeling like I was being sucked up and into a turbulent and destructive wind storm, I started feeling and seeing the amazing gifts of life I had been missing prior to her illness.  The velocity of the storm rewired me.  I saw things through new eyes.  I heard things with new ears.  I felt things on a level I didn’t know was possible.

Gifts Appeared Before Me On A Regular Basis

The gift of simplicity.  The gift of stillness.  The gift of a smile or giggle.  The gift of a simple glance that melted my heart.  The gift of deeper connection and consciousness. The gift of unconditional love which unfolded in many levels which I didn’t even know existed. Life became peaceful and filling.  Judgement and guilt left the building and it was amazing what this shift did to my soul.  How it affected everything I did even though sometimes in a very subtle fashion.

Joy Is Possibledan_me_mom_laughingUncontrollable laughter is a good thing!

One year after mom’s death I was shocked to not still feel a great sense of deep loss, but to my surprise more often then not I am just filled with gratitude of having the privileged to live life with her, disease and all.

Now don’t get me wrong, I still have aching pains of loss which can overcome me at the strangest times and crocodile tears can stream down my face and my stomach turn to knots, but they have dissipated greatly.  Now these times that once made my soul feel as it were drowning have been replaced with overwhelming sense of gratitude, peace and love.

The Cycle Of Death and Life

charlotte new born wide awakeDuring this year of loss my daughter Danielle gave birth to her beautiful daughter Charlotte RuthAnn.  (Charlotte’s middle name came from my mother’s middle name “Ruth” and mine “Ann”)  So touched by the gift of this precious little grandchild who we all feel strongly mom picked out just for us.   So many loving things have come into my life during this past year.  I would foolish not to recognize and embrace them.  They help fill my heart where emptiness once stood.

The Legacy Of Life

braceletMy daughter Danielle and Steve gave me this lovely bracelet which had rings for my mother and father who have passed, and my grandchildren Charlotte and Mickilah.  The circle of life continues and brilliance of life lessons is passed on.

My Wish For You

May you all find joy in our lives no matter what comes before you.  May the life lessons you have learned you pass onto others as gifts.  May you find peace in your soul and feel a true sense of belonging and engaging to all who come into your your life. I thank you each for your support and love in my life and my work.

My Mom And I Raise a Glass And Toast You And All Life Has To Offer

Enjoy Life

Lori La Bey, founder of Alzheimer’s Speaks

wine_glassesquilt patch moms 3Join The Purple Angel and Help Change The World

SocialMedia081114_purpleangel_carousel TMFor more information on Dementia and Caregiving

Click Below

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Recorded Webinar For Dementia Chats – Tues Feb 24th, 2015

Recorded Webinar For Dementia Chats

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Click Above for General Information on Dementia Chats

Tues Feb 24th, 2015

Click Below For The Recorded Session With Our Experts:

Harry Urban, Michael Ellenbogen, Dena Dotson and Robert Bowles

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Today we discussed a variety of topics, from the Oscars with “Still Alice,” to interactions with doctors to advocacy and more.

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Dementia Chats FREE Webinar Tuesday, Feb 24th – Talk To the Experts

Dementia Chats FREE Webinar Tuesday, Feb 24th 

3pm EST, 2pm CST, 1pm MST, 12pm PST and 8pm London time

DC_HQ_062714_solidyellow2 color photosTalk To the Experts Living With Dementia

Ask Your Questions and Get Insights

Log in as a guest.  No password is needed

For More Resources on Dementia And Caregiving

Click Below

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Two Hour Special On Frontotemporal Dementia on Alzheimer’s Speaks Radio

Two Hour Special On Frontotemporal Dementia

on Alzheimer’s Speaks Radio

022415 ASR FTD specialMark Your Calendars for Tuesday Feb 24th!

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

If you can’t listen live, listen later.

Alzheimer’s Speaks Radio wants all voices to join together in the conversation to share knowledge, research and insights from all angles.  There is no better way to raise awareness than being inclusive.  Let’s join forces and win this battle together!

Our guests will include:

???????????????????????????????Sharon S. Denny, Program Director

AFTD-logo-updatedHoward Glick who is diagnosed with FTD

howard glick picLisa Griffin a Care Partner for her husband John who is living with the disease

Lisa Griffin FTD caregiverDr. Alvin Holm

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Dr Holm bethesda-logo-blue Heidi LaMeyer- Prelude Wellness Director at

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Judy Berry

Judy Berry picwithJudyn Berry logoWho is consulting with Prelude Memory Care 

We encourage anyone who is dealing with or interested in dementia to join the conversation by

calling in live at (714) 364-4757 or using the chat box!

For Additional Resource And Information

Check out Alzheimer’s Speaks Resource Website Below

alzsnap_serv_072413For More Resources Check Out Our Friends!

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Mr. President and Congress… Are you Listening?

Dear Mr. President

and Congress…

Are you Listening?

Watch Below

Please share far and wide.

It’s time the US government hear from those diagnosed with Dementia.

thank you Michael Ellenbogen for taking the time to make this video.

For information on

Dementia and Caregiving

Click Below

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For More Resources Check Out Our Collaborators Below

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THE STORY OF THE PURPLE ANGEL TO BE MADE INTO A DOCUMENTARY

THE STORY OF THE PURPLE ANGEL

TO BE MADE INTO A DOCUMENTARY Large Purple white background Angel for drop box“WE NEED YOUR HELP PLEASE”

Norrms McNamara says.

Norrms I have dementia but dementia doesnt have me

Here Is What Norrms

Wants You To Know

This is the news I have been itching to tell you about for months!! The story of how the Purple Angel Campaign (this is the original and official UK site) began and what we have achieved since is to be made into a Documentary. We have a director from Prague flying in and filming will start in March here in Torbay and then Beyond!!

Click Here to get to the Official Purple Angel Campaign for the US

Please share this on every page you know, every TV station , every newspaper , every radio station, just EVERYBODY!! so we can show the world what a difference ordinary people like us can make when we all get together . So very exciting and a HUGE thank you to Laurence Kelly of Ostrich Care !!!!

If you or anybody you know / business`s etc can make a small donation towards the kick starter project it will be very welcomed. The Directors showreeel at the end is to show the wonderful atmospheric films he has directed, they are not Dementia related.

 

 

Seven years ago Norman McNamara, who lives in Torquay, was diagnosed with Dementia. Still in his 50s Norrms decided he couldn’t just sit there and do nothing.

Seven years on, Normans’ quest to create more Dementia friendly communities is well under way. His Purple Angel campaign has literally gone global – with more than 300 Ambassadors helping to spread awareness across the UK and now the World.

This very real life story, without dramatization nor fiction, is to be told in an upcoming documentary. The project’s producer feels that “the work of the Purple Angels and Norman McNamara, deserves to be told,”. Laurence Kelly is keen to “show the variety of the work these volunteers engage in – running memory cafes, dementia drop in centres and making those in their area dementia aware plus so much more.”

You Can Support This Project

Go To Kickstarter

“We’re making this independently” says Director Will Thomas Freeman “your support will help us tell an inspiring story and showcase the incredible work of this man and all the good his organization has done for others. We want to bring the topic of dementia to the main stage.”

You can receive rewards for your pledges on Kickstarter, “the more funds we raise, allows us to film more content, more people, more stories.” says Freeman ” please, help us to achieve this.”

Norman McNamara has achieved so much, along with his army of volunteers, that fitting everything in is one of the biggest challenges! “It may turn into a series” jokes Kelly “as The Purple Angel is showing no signs of slowing down!”.

“To help improve the lives of people you will probably never meet has to be the kindest act of all.” – Norrms McNamara

For more information on Dementia and Caregiving

Check Out Below

alzsnap_serv_072413Check Out Our Friends Below

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