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“Alzheimer’s: A Love Story” by Michael Horvich

In February this year, DAI hosted a Webinar and Documentary, “Alzheimer’s: A Love Story” by Michael Horvich. You can view his presentation below, read excerpts of his presentation notes, and download the documentary from the links to Amazon and Vimeo at the end of this blog.

The following is an excerpt of his full speech:
“I am pleased to be here with you today and want to thank Kate Swaffer for the idea and DAI for making this gathering possible. Thank you ALL for joining us. I see some faces out there that I recognize and some that are new to me. For those of you calling in, I cannot see your face but I know it’s a friendly one! Some of you have stayed up very late to be with us, some of you have gotten up very early.
 
And some of you can FORE-TELL THE FUTURE … because it’s already tomorrow where you live … please let me know how today goes.

…

The story I am about to share with you is very personal one. I’m comfortable with crying in front of you, however it is very difficult to cry … and talk at the same time. So if I do get choked up, I will pause, take a few deep breaths, and be right back. Thank you for your understanding.
 
Gregory, my husband of over 41 years, who I met in the late 70’s … and lived with in a committed, same sex relationship before it was fashionable to talk about such things publicly … was diagnosed with DEMENTIA, most likely ALZHEIMER’S, in the 29th year of our relationship.
 
We walked the Dementia/Alzheimer’s path together for 12 YEARS … He was NOT a victim of Alzheimer’s … but rather a HERO.
He lived as well as possible as the disease progressed and I was able to keep him safe and to support him by helping him to be free of worries, responsibilities, and fears.
 
I was able to help him compensate for his diminishing abilities while always trying to make sure that the respect and communication which defined our relationship never faltered. I made sure that our daily life was full and rich and meaningful. Our life was filled with much laughter as well as many tears, joy as well as sorrow. And above all, it was filled with LOVE.
 
The times were not easy, but we persevered.
 
Admittedly, it is easier to talk about our adventure while looking back … when compared to the SOMETIMES HELL it was during the actual experience Dementia/Alzheimer’s path.
 
Alzheimer’s is not just about failing memory, as some people believe, and as you probably know. It also affects the thinking process, bodily functioning, and day to day activities.
…
Gregory lived at home in our condo in Evanston, Illinois, in the U.S.A. for 10+ of his years with dementia.
…
 
As my friend Kate Swaffer says, “the diagnosis of Dementia/Alzheimer’s does not have to be a DEATH SENTENCE, one can choose to live a full, meaningful life and find ways to deal with its progress.”
 
I have said that Gregory was not a VICTIM of Alzheimer’s but rather a HERO! Recently, in looking back, I have begun to be been able to say that Gregory … AND  I … were not victims of Alzheimer’s … we were BOTH … HEROS!
 
The documentary, ALZHEIMER’S: A Love Story, which you are about to see, follows Gregory and me for a week towards the end of his life.
 
The documentary was done in March of 2015 by the son of Gregory’s college roommate and best friend. Gregory passed seven months later. Gabe, the son, created the documentary as part of the requirements for one of his college courses in film making at Chapman University, Dodge School of Media Arts in Orange, California.
 
The message, which I believe is a beautiful one, takes Gregory and my 41 year love relationship and Gregory’s 12 years living with Alzheimer’s, and distills it into a moving 15 minute documentary. 
I think you will agree as you experience the story … that the same sex couple issue … and the Alzheimer’s issue … almost seem to disappear  … what emerges is a story of any two people who love each other very much … and what happens to that love when any long term, catastrophic disease strikes…”
Michael Horvich, Copyright 2017

YOU CAN RENT ALZHEIMER’S: A Love Story at: AMAZON.com and VIMEO.com

Please go to Michael’s website to for his full presentation notes, Bibliography, Resources and other links from his website and this webinar and documentary.

Dementia, Dementia Alliance International, Dementia Friendly, disAbility rights

Wishing you all a happy and safe festive season

 

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The Board of Dementia Alliance International wishes our members and supporters a happy and safe festive season, and we very much look forward to seeing you online or in person somewhere in 2016.

It is the festive season for many, and we take this opportunity to wish you all a wonderful time with your families and friends, and hope you stay safe.

It is worth remembering, it is not always a joyous time for everyone, so be kind and gentle on yourselves, and with each other.

Living with dementia: new perspectives

Our blog today also follows the email we sent inviting you to attend the Webinar, A Meeting of The Minds – Living with dementia: new perspectives –  with Dr Al Power in January 2016.

You can register for it here…

Happy 2nd Birthday

Two weeks before the event with Dr Power, we will celebrate our 2nd birthday with an online global celebration, and you will receive an Zoom meeting link early in the New Year.

Keep the date free: Wednesday January 13 / Thursday January 14, 2016 (USA/AU)

It will be a fun and exciting time, and we have much to celebrate. Perhaps the best thing to celebrate is the fact we are growing from strength to strength, with membership, and a louder global voice.

There were (perhaps still are) many doubters that people with dementia could set up and run their own group, including providing FREE membership and FREE services top others with dementia, all done with very little funding. Be proud . We certainly are.

Wear a hat, make a cake, do what ever you feel will make it fun for you.

If you live in the same town or area as other members, get together on the day, and join in as a group. Join forces with other DAI members in person. Have fun, and keep making a difference to not only you down life, but to the lives of others.

Our new Board of Directors

We will introduce our new Board of Directors early in the new year, and look forward to a very exciting year for people with dementia globally as we move towards a world where there really is “Nothing about us, without us.”

Please note:

There will be no Board meeting or Members Open meeting in January 2016, but instead a shared  celebration and an opportunity to meet the new Board members. All formal meetings like this will resume in February.

Best wishes from the 2015 outgoing and 2016 incoming Board members of Dementia Alliance International.

Chair and Editor: Kate Swaffer

A Meeting of the Minds, Dementia, Dementia Alliance International, Dementia Friendly

DAI A Meeting Of The Minds, with International speaker Nicole Batsch

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Wednesday December 9 (USA/UK)

Thursday December 10 (AU/NZ)

“Dementia Friendly Communities Defined – Key Components for a Successful Start”

About our event: In England where there are over 60 towns and cities that are working towards becoming Dementia Friendly Communities, a large scale expert and public consensus process took place from 2014-2015 to define the common elements of what being “dementia-friendly” means. This process culminated in the publishing of the British Standard Code of Practice for the Recognition of Dementia-Friendly Communities in England developed by the British Standards Institute and the Alzheimer’s Society with funding from the Department of Health and launched in July 2015.  The aim was that this code of practice would help to support existing communities and to inspire new communities. It provides recommendations on:

  • Who needs to be involved in setting up a dementia-friendly community
  • Aims and goals that should be central to all dementia-friendly communities
  • Areas to focus on and the processes needed for your dementia-friendly community to operate successfully
  • The positive changes for people with dementia that we would expect to see from a dementia-friendly community

About our Speaker:  Nicole Batsch has over 18 years experience in developing and supporting ageing and dementia care  programmes across the US and globally.  She is currently obtaining her PhD from King’s College London and is a consultant with Alzheimer’s Disease International.  In this role, she co-authored the World Alzheimer’s Report 2012:  Overcoming the stigma of dementia which included a global survey of stigmatising experiences of people with dementia and family caregivers and serves as an adviser to the World Health Organisation on a family caregiver education programme.  In this session, Nicole will be discussing her involvement with the British Standards Institute and the Alzheimer’s Society in developing the British Standard Code of Practice for the Recognition of Dementia Friendly Communities in England.

Date: Wednesday December 9 / Thursday December 10, 2015

Speaker: Nicole Batsch, PhD candidate from Kings College, UK

Register here…

Wednesday December 9 Start Time (USA/CA/UK/EU):

  • 12.00 p.m. Pacific Time (San Francisco);
  • 1.00 p.m. Mountain Time (Denver);
  • 2.00 pm Central Time (Chicago)
  • 3.00 p.m. Eastern Time (Washington DC);
  • 10.00 a.m. in Honolulu, Hawaii;
  • 8.00 p.m. in the UK, London;
  • 9.00 p.m. in Paris and Budapest.

Thursday December 10 Start time (Australia/NZ/Japan/Indonesia):

  • 6.00 a.m. in Brisbane;
  • 7.00 a.m. Sydney, Canberra, Melbourne, Hobart;
  • 4.00 a.m. in Perth;
  • 6.30 a.m. in Adelaide ;
  • 9.00 a.m. in Auckland, New Zealand;
  • 3.00 a.m. in Indonesia;
  • 5.00 a.m. in Tokyo, Japan

The WEBINAR will run for 1.5 hours. To find out the start time in your city, click here…

Register here…

Note: Attending our events supports everyone connected to dementia, whether the person diagnosed, our care partners, or the professionals and research community who work to suppport us and improve our lives.

We have needed to start to charge a fee for those who are working in the sector. You will be able to claim the cost of the tickets as a tax deduction. The fee for this service supports your education, and also supports our work which directly supports people with dementia.

Certificates of Attendance are available for professionals and students. If you need a certificate of attendance, please email us at [email protected]

People with dementia, and their care partners, are usually no longer in paid employment, and therefore tickets remain FREE. 

Donations are always appreciated.

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