Category Archives: Café Le Brain

Media release 2: DAI rationale for service changes

DAI e-News April 2022
Detailed explanation of service changes

Dear colleagues and friends,

Further to our recent announcement of the changes in DAI, we wish to share the following more detailed explanation of why it became necessary to suspend so many of the DAI member services as well provide some history for context. Looking back has been essential to moving forward.

Most reading this will know that Dementia Alliance International (DAI) was founded on 1 January 2014 by eight people diagnosed with dementia, all with a dream to provide support for other people living with dementia, and to advocate for others with dementia to live more positively, for better services and support, and for our rights.

The eight founding members hailed from three countries with a collective dream for an international organization being a group ‘of, by and for’ people with dementia.

Exemplifying the nothing about us without us philosophy as the founders had all recognized that people with dementia did not truly have a voice having had it taken away by the stigma and discrimination of dementia. Their dream was to advocate for the autonomy and rights of all people living with dementia.

People with dementia have a human right to self-determination and full inclusion in society (not to be isolated, discriminated against, or segregated from society).

Peer to peer support for people with dementia

The founders learned there was no organization with this shared belief among thousands of organizations whose leadership and missions were all about research for a cure or supporting the carer and that those organizations rarely included persons living with dementia in their governing ranks or in their mission statements. It’s as if people with dementia didn’t exist, except when used as fund raising tools.

Even support groups for persons living with dementia required the participation of a family member or care partner and the conversation was dominated by the one without dementia. We knew persons living with dementia needed and deserved a safe and private place to participate in peer-to-peer support.

We knew this methodology was valid as Alcoholics Anonymous had already proven it works. Many had already been meeting online to support each other and it is that camaraderie and self-determination and the growth of a collective global advocacy that gave birth to Dementia Alliance International, an organization founded and led only by and for persons living with dementia across the globe.

For many years, people with dementia had been promised funding for a global group, as far back as the late 1990’s, when Christine Bryden and others founded the Dementia Advocacy Support Network International (DASNI). The late Dr. Richard Taylor had also been promised the same thing many times but as it was never forthcoming, hence the founders of DAI decided to set it up, as well as fund it and run it themselves.

DAI has always had to fight hard for anyone to support us, and then, it has never been more than piece-meal funding. Typically, just enough to set boundaries on our advocacy.

The Board and many of our members believe the best work that DAI has done is to provide peer to peer support, which in turn has empowered more newly diagnosed people to get back to living.

DAI was using Zoom long before the COVID pandemic; it started the first online peer to peer support group for people with dementia in the world, which continues today, and DAI still hosts the only living alone peer to peer support groups that we know of, in the world.

DAI’s global support for, and advocacy and representation of people living with dementia has been significant and ground-breaking, and we know we have much to be proud of.

Our members continue to report that our peer-to-peer support groups are an amazing, life-giving steppingstone for people more newly diagnosed with dementia to ‘get back to living’. This is truly powerful work, that even in times of covid, no other organisations yet do.

However, it appears to DAI that many people without dementia do not fully support our organisation. We base these assumptions on the actions and attitudes of others, and because so few people or organisations support DAI, promote DAI, partner with DAI, or donate to DAI.

In fact, pre covid, when zoom webinars being hosted by other organisations were rare, DAI tried a few times to add a small registration fee to their monthly webinars to help with financial sustainability.

Shockingly, a great many people in paid employment, including staff members of dementia charities, falsely registered as DAI members, to avoid the fee.

The other truth that DAI has had to face, especially members of DAI who are not active advocates with their national charities, is they are still fighting for Article 19 of the CRPD.

Inclusion is too often still missing, and it continues to be ‘about us, without us’.

For these and a numer of other reasons as outlined below, DAI had no choice but to reassess its future direction and services.

International dementia advocacy requires significant leadership, statesmanship and organizational skills as well as public speaking skills and knowledge of not only of the lived experience of dementia, but of policy, human rights and so on. Just being diagnosed with dementia, doesn’t provide these skills and thus there is a limited pool of talent to draw on. DAI has found it difficult to retain people in our membership with a passion for advocacy, who have the required skills and are willing to serve DAI, as they are often approached by the charities, researchers, and other organisations to get involved with their work.

This leaves DAI ‘dry’ and returning to square one repeatedly having to find and train new members to do the work. Even when DAI is actively working with others, it is mostly without renumeration to, or recognition of DAI or its membership.

DAI has faced some unique and difficult challenges 

Firstly, all DAI members live with dementia, and whilst they are often willing to volunteer, they also have significant time and financial constraints as they tackle the daily challenges of living with dementia, and the lack of post diagnostic support. Beyond that, DAI has faced many other significant difficulties.

  1. Other charities, organisations, researchers, start-ups, and individuals are constantly inviting DAI members to work with their organisations, which then means DAI has had difficulty retaining members to support their own organisation.
  2. Furthermore, other organisations usually have significantly more funding than DAI, and are therefore able to provide paid staff to support their volunteer self-advocates, making it even more difficult for DAI to retain active members.
  3. DAI has increasingly been asked over the last 8+ years to support researchers, individuals, and organisations with their grant applications, to promote their projects and surveys, but then not appropriately included in the work.
    • DAI is very rarely funded in the projects,
    • DAI is rarely included in the activities or focus groups projects, and instead of working with DAI, researchers go to the national dementia charities and their dementia working or advisory groups.
    • DAI is rarely referred to as an organisation for people with dementia, in the research outcomes, yet
    • DAI is expected to promote the surveys and other project activities.
  4. Since mid 2015, DAI has been thrilled to have the support and funding of strategic partners and other donations to fund its operations.
    • In mid 2015, ADI became DAI’s first strategic partner
    • In November 2018, Dementia Australia became a major donor; the following year, DA became our second strategic partner
    • Both partners currently provide $20,000 USD per year
    • DAI receives very few other donations.
  5. Clearly however, this means we have insufficient strategic partners and donors to remain sustainable in our current format, let alone have access to financial resources that can be used to hire paid staff to support our organisation.
  6. The lack of adequate funding has always been a major issue limiting available technologies, marketing materials and staffing.
    • Therefore DAI has had no choice but to modify its structure and services.
  7. We have been well supported by our non-member volunteers, but it is becoming increasingly difficult to find volunteer staff who have the time, or that don’t have an unconscious biases impacting their ability to work within the ‘nothing about us, without us’ philosophy, or hidden personal agendas which we do not fit with DAI’s vision or mission.
  8. Inclusion of DAI members by individuals and other organisations continues to be tokenistic at best.
  9. Recognition of the disabilities caused by dementia and adequate reasonable adjustments and disability support are not provided making it difficult or impossible for persons living with dementia to participate fully or equally.
  10. Finally, whilst others appear publicly to support DAI, most do not want a truly autonomous voice in this very crowded space, notably, when we differ to the goals of other organisations.

Working with DAI in the future

Moving forward, DAI will fulfil any current commitments made to research projects or other projects and organisations. It will also continue to work with the WHO and UN, as it has over the last many years.

However, it will need to limit its involvement with individuals and other organisations in the future.

It is obvious that people with dementia continue to be the only people in the dementia sector who are not paid for their labour and expertise, and where others who get to meet our members, then want them to work with and promote their organisations, but with little or no reciprocity to DAI.

Therefore, DAI will soon release a policy for how individuals, start-ups, researchers, and all others will be able work with our organisation and our members, so that it is fair and equitable for everyone.

Although this has partially been outlined in the documents, Value to a sponsor partner or donor and Opportunities for researchers, partners sponsors and associates, both updated in 2018, it is apparent they are unclear.

Thank you

The board sincerely hopes this rationalization and suspension of four services is temporary, and that some will be reactivated in the future, and we thank you for supporting us as we streamline our operations to ensure our core activity, which is peer to peer member support is sustainable.

DAI’s incredible work and willingness to support and work with others, without reciprocity has been a major contributor to the need to make these very difficult decisions. Hence, we really hope that moving forward, the many organisations and individuals DAI has so actively promoted and supported for the last eight+ years, will consider reciprocating and partnering with us in the future.

“Nothing about us, without us.”

Cheryl Day
Acting Chair
On behalf of the Board of Directors
Dementia Alliance International (DAI)

DONATE TO OR PARTNER WITH DAI TODAY

Reminder: Effective immediately

DAI will continue to provide the following services:

  1. Free membership for people living with any type of dementia.
  2. Weekly Peer-to-peer support groups for DAI members (no cost to members).
  3. Provide member and data base communications via regular blogs on the website, not through e-news using MailChimp.
  4. Retain its charitable 501c3 status in the USA to allow for donations to continue.
  5. Retain its CPA to perform the annual financial reporting and required IRS related paperwork.
  6. Retain the award-winning DAI YouTube channel.
  7. Retain the DAI website, which is currently being updated.
  8. Retain the DAI branded Facebook, LinkedIn and Twitter social media pages.
  9. Finally, the Environmental Design Special Interest Group (ED-SiG) will continue to be led by Emily Ong, from Singapore

DAI Human Rights Advocacy

The global human rights work we currently do will continue, although DAI will need to fund an external partner or expert for this work to continue. Kate Swaffer will continue in her role as interim human rights advisor until the AGM in June, while the board decides on its long-term future direction. DAI will continue to work with the WHO and UN, will retain its ECOSOC status at the United Nations, and its Observer status with the International Disability Alliance.

DAI is suspending the following services until further notice:

  1. Monthly “Meeting Of the Minds” Webinars
  2. Monthly virtual Cafe Le Brain
  3. Twice monthly Brain Health Hub Zoom Meetings
  4. The annual WRAD event

Furthermore, to reduce costs, DAI will cease the monthly newsletter and other mailings, and blogs on the DAI website will be used to communicate to members instead. We hope the increased activity on our social media pages will fill any potential communication gaps.

Please note therefore, that all future official and other communications will be through the website as a blog; this mean you need you to subscribe to them to receive our news and any other communications. 

Note: we sometimes use voice recognition software for correspondence​ and newsletters; ​​hence there may be some grammatical errors or spelling mistakes, for which we thank you for your understanding.

Media Release: DAI to suspend some free services

Dear friends and colleagues,

The DAI Board met at a special board meeting on March 25/26, 2022 as we saw the need for a thorough internal review of our services.  This was brought about by the identified strained resources we have, to support the current operations.

We certainly appreciate the unusual world we are living in at the moment and DAI, like many other Not For Profit and Charitable organisations are competing for volunteers and funding to remain viable and sustainable.

We assure you that the DAI Mission and Values were at the forefront of our thinking; and we value the volunteers and supporters around the world who continue to support us; thank you.

This media release is to advise you that following the review, the Board has made the very difficult, but necessary decision to reduce the current services provided by DAI until further review. Our hope, is that we can build up our volunteer base once again and continue to provide amazing resources to ensure “Nothing about us, without us.”

The priority of the special board meeting was to discuss the following two options about the services, sustainability, and future of DAI.

OPTION 1:

  • Wind up the affairs of DAI, and
  • Cancel charity status and disperse funds.

OPTION 2:

  • Revert to peer-to-peer support groups only,
  • Drop all other work, including e-newsletters, webinars, cafe le brain, and brain health hub meetings,
  • Replace newsletters with more activity on social media, and
  • Stop or scale back blog posts.

Following this meeting, the board has unanimously made the following decisions.

Effective immediately, DAI will continue to provide the following services:

  1. Free membership for people living with any type of dementia.
  2. Weekly Peer-to-peer support groups for DAI members (no cost to members).
  3. Provide member and data base communications via regular blogs on the website, rather than through e-news using MailChimp.
  4. Retain its charitable 501c3 status in the USA to allow for donations to continue.
  5. Retain its registered accountant to perform the annual financial reporting and required IRS related paperwork.
  6. Retain the award-winning DAI YouTube channel.
  7. Retain the DAI website, which is currently being updated.
  8. Retain the DAI branded Facebook, LinkedIn, and Twitter social media pages.
  9. Finally, the Environmental Design Special Interest Group (ED-SiG) will continue to be led by Emily Ong, from Singapore

Effective immediately, DAI is suspending the following services until further notice:

  1. Monthly “Meeting Of the Minds” Webinars.
  2. Monthly Cafe Le Brain.
  3. Twice monthly Brain Health Hub Zoom Meetings.
  4. Annual World Rocks Against Dementia (WRAD) event.

We looked at a number of ways to work ‘smarter’ so we can continue to provide the same level of communications, but in a different way and came up with these options.

To reduce costs, DAI will cease the monthly newsletter and other mailings, which will be replaced entirely by blogs on the DAI website to communicate to everyone, including members. We hope increased activity on DAI social media will help fill any potential communication gaps.

Please note therefore, that all future official e-news and other communications will be through the website as a blog, which will mean you need to subscribe to them to receive our news and other communications.

The global human rights work we currently do will continue, although DAI will need to fund an external partner or expert for this work to continue. Kate Swaffer will continue in her role as interim human rights advisor until the AGM in June 2022, while the board decides on its long-term future direction. DAI will also retain its ECOSOC status at the United Nations, and Observer status with the International Disability Alliance.

Detailed below is a brief explanation of why DAI has been forced to face these changes, due primarily to the following set of unique and difficult challenges.

  1. DAI members who all live with dementia are often willing to volunteer, but also have significant time constraints as they are also tackle tackling the daily challenges of living with dementia.
  2. Significant demand on volunteers around the world.
  3. DAI has been asked and had the opportunity many times over the last 8 years to support researchers, individuals, and organisations with their grant applications; we are working on being appropriately included in the work and funded in the projects.

Since mid 2015, DAI has depended on strategic partners and donations to fund its operations; before that, board members self funded it.

We are very grateful that in mid 2015, ADI became DAI’s first strategic partner. In November 2018, Dementia Australia became a major donor; the following year, DA became our second strategic partner.

It takes time to build up strategic partners and donors to remain sustainable in our current format, and to have paid staff and financial resources that can be used to hire additional staff to support our organisation.

Unfortunately, the lack of adequate funding has always been a major issue limiting available technologies, marketing materials and staffing.

The board sincerely hopes that these changes are temporary, and that some of our services will be reactivated in the future.

DAI continues to be an amazing, life-giving organisation that provides a steppingstone for people more newly diagnosed with dementia to ‘get back to living’, which is truly powerful work, and we will continue to do this.

We thank you in anticipation of your support us as we streamline our operations to ensure our core activity continues, which is to ensure peer to peer member support is always sustainable.

Finally, we will send another email later this week, with a more detailed explanation of why these changes have had to be made at this time.

“Nothing about us, without us.”

Yours sincerely,

Cheryl and Alister

Cheryl Day/Alister Robertson
Acting Chair/Chair (on leave)
On behalf of the Board of Directors
Dementia Alliance International

Join us as we say goodbye to 2021

Please Join Dementia Alliance International as we say goodbye to 2021, and celebrate the new year with a Festive Season Café! 

Altough late postign here, we are thrilled to invite all DAI members, family, friends and partners as well as anyone in the global dementia community to join us for a Special Festive Season Café to celebrate the spirit of the holiday season & ring in the new year! Hosted by the DAI Board of Directors.

This is a virtual celebratory event primarily for DAI members, family, and friends. Everyone is welcome. Please respect our members; it is not a networking opportunity.

DAY/DATE(S):
– Tuesday, December 21, 2021 (USA/CA/UK/EU)
– Wednesday, December 22, 2021 (AU/NZ/Asia)
– Please note this is one event, set in a number of different time zones.

DAY/DATE(S):

Tuesday, December 21, 2021 (USA/CA/UK/EU):

    • 1:00 pm PST
    • 2:00 pm MST
    • 3:00 pm CST
    • 4:00 pm EST
    • 9:00 pm GMT, UK

Wednesday, December 22, 2021 ( AU/NZ/ASIA):

    • 5:00 am SGT
    • 7:00 am AEST
    • 7:30 am ACDT
    • 8:00 am AEDT
    • 10:00 am NZDT

Check your time here if not listed above.

COST TO ATTEND:

  • FREE
  • YOUR DONATIONS ARE GREATLY APPRECIATED:

Support people with dementia this holiday season!

Please donate to DAI or become an Associate or Partner with us!

Without YOUR DONATIONS, DAI could not provide the services we currently provide for members, their families & our global family.

 

 

The importance of connections by Chrissy Thelker

For Day 8 of Dementia Awareness Month, we are thrilled to publish a blog about the importance of connections, written by DAI member, Chrissy Thelker.  #WAM2021 #DAM2021 Thank you Christine.

The Importance Of Connections 

By Christine Thelker
This morning much too my delight, I received a video call from a friend who also lives with dementia, she is in Scotland to visit her mother.
Now for a little history; she and I have never met in person, yet we have a connection, a friendship that is the type of friendship that warrants a video call even though she’s on the other side of the world on holidays at the moment.
During our conversation today she told me one of the reasons she had to call was because she wanted to thank me, for reaching out and answering her when she was first diagnosed and looking for support.
It was through that that she became a member of DAI, it was through that that the friendship blossomed. DAI is often the gateway to connecting people. It affords us the opportunity to meet others who share our journey.
DAI gives us that safe place to share to laugh to cry. To rediscover who we are after being devastated by receiving a diagnosis.
The people we meet, the webinars the cafes, the support groups, they all help us learn to live, to really live, despite our illness. You can attend many groups, work with many organizations, and they all offer certain things, we can gain something from many of them. I have watched as many who came to DAI struggling through the devastation of being diagnosed, feeling lost, alone, their confidence and self worth bottomed out.
I have watched those same people flourish and bloom, to go on to do many great things, not only for and as part of DAI, but also to start, or take active roles in other organizations, they have found themselves, reinvented themselves, regained the confidence they had lost and they are doing an incredible things that end up helping others.
And that was what the video call this morning was about, a call to say thank you for reaching out, because while in Scotland it offered her the opportunity to be that for someone else, and so felt compelled to say thank you. I was so moved by that call, we discussed how important those connections we make are, how important and intricate they are to our journey to find our wellness, to our continued well being.
We form connections, we find friendships, even with people we haven’t met.
We so often talk about all the things we can do to help us in our bid to live our best lives with dementia, we talk about, rehabilitation, nutrition, exercise, sleep, being mindful. But I believe the often overlooked piece is connections, connections with others.
I am grateful for the friendships and connections DAI has brought to my life, I continue to reach out to others, and have been so grateful to hear on several occasions in the last few weeks from some thanking me and I always hope that they to can offer that someday to someone. My friend thanked me for the gift I had bestowed on her which allowed her to be that person for someone else, the connections are truly a gift.
Together the impact we have on each other, for each other, is priceless.
So for Dementia Awareness Month, I challenge you all to think about the friendships you’ve made, and reach out and offer it up to others, encourage them to join DAI, so they to can go on and be instrumental in all the good that’s being done out there, through DAI and the many grassroots and local groups, and many organizations that are striving to improve the lives of those of us who are living with dementia.
Christine Thelker 

Since you’re here, please donate to DAI today

By donating to DAI, you will ensure we can continue our work supporting people diagnosed with dementia, our families and friends who support us, and the broader dementia community of researchers and professionals.

You are invited to DAI’s 7th birthday Cafe

You are invited to the January 2021 virtual DAI Cafe Le Brain to help us celebrate 7 years of DAI’s advocacy and progress.

DAI Celebrates 7 Years

Hosts: Christine Thelker, Wally Cox and Kate Swaffer

Speakers include: Mr John Sandblom, Co founder and Treasurer, Dementia Alliance International, Mr Glenn Rees, Chair, Alzheimers Disease International and Ms Bethany Browne, Human Rights Advisor, International Disability Alliance.

Everyone is welcome.

DAI members will receive the zoom link to join by email.
All others will need to register here please.

DAY/DATE(S):

  • Tuesday, January 26, 2021 (USA/CA/UK/EU)
  • Wednesday, January 27, 2021 (AU/NZ/Asia)
  • Please note this is one event, set in a number of different time zones.

About the Cafe: Every month, DAI hosts a virtual café for its members and their families and supporters, and we have been doing so now for over 7 years!

Each January, we take this opportunity to celebrate our birthday together, and we invite you to join us. From small and humble dreams of global advocacy and human rights, and now, for dementia to be managed as a disability, alongside providing weekly peer to peer support and brain health sessions, we have achieved a lot!

This is your opportunity to hear from others who will share where we have been, acknowledging the work we have done, and dreaming together for our future. Our vision is for all people to be valued and equally included, including people with dementia and our care partners.

Everyone is welcome.

DAI members will receive the zoom link to join by email.
All others will need to register here please.

Programme:

  • Introductions and welcome by Kate Swaffer
  • Graeme Atkins performs, Happy 7th birthday DAI
  • Introducing our new Chair, Alister Robertson from New Zealand
  • Board update, Alister Robertson
  • DAI ‘(W)re-creational Officer, Graeme Atkins performs the DAI 7th birthday song, written by him
  • DAI’s global advocacy, and the value of our collaboration with ADI, by Glenn Rees
  • The importance of human rights and the CRPD for people with dementia, by Bethany Browne
  • An overview of the last 7 years (with images), hosted by Christine, Kate and Wally; you will hear from others including co founder Amy Shives and our long term volunteer Sarah Yeates

We will hear from a number of members and guests, inluding some of our co founders, volunteers and other special guests, including:

Mr John Sandblom, who is a co-founder of Dementia Alliance International (DAI), board member and the current Treasurer, and was instrumental in helping to set up DAI.

Mr Glenn Rees, who is the outgoing Chair of Alzheimer’s Disease International, and a former Chief Executive Office of Dementia Australia.

Ms Bethany Browne, who is the Human Rights Advisor to the International Disability Alliance, and formely worked for Human Rights Watch, including writing two reports on the excessive use of chemical restraint in nursing homes in the US and Australia.

Everyone is welcome.

DAI members will receive the zoom link to join by email.
All others will need to register here please.

DAY/DATE(S):

Tuesday, January 26, 2021 (USA/CA/UK/EU):

  • 1:00 pm Pacific
  • 2:00 pm Mountain
  • 3:00 pm Central
  • 4:00 pm Eastern
  • 9:00 pm London/Glasgow/Dublin UK
  • 10:00 pm Paris, Munich, Amsterdam, EU

Wednesday, January 26, 2021 ( AU/NZ/ASIA):

  • 5:00 am Perth, AU/Taipei/Singapore
  • 7:00 am Brisbane, AU
  • 7:30 am Adelaide, AU
  • 8:00 am Sydney/Melbourne/Canberra/Tasmania/Brisbane, AU
  • 10:00 am Auckland, NZ

The Webinar runs for up to 1.5 hours.

Check your time here if not listed above.

COST TO ATTEND:

  • FREE
  • YOUR DONATIONS ARE GREATLY APPRECIATED

PLEASE DONATE TO DAI OR BECOME AN ASSOCIATE OR PARTNER WITH US. WITHOUT YOU, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & OUR GLOBAL FAMILY.

Support people with dementia:

Everyone is welcome.

DAI members will receive the zoom link to join by email.
All others will need to register here please.

THANK YOU

Join us to celebrate the end of 2020!

Join us to celebrate the Festive Season and the end of 2020!

This is your invitation to join us at our December Virtual Festive Season Cafe, which is being hosted by Christine Thelker, Janet Duglas and Wally Cox.  It has been a truly challenging year for everyone, and we are grateful for our DAI family and friends, and look forward to sharing this time together.

Please note, this virtual cafe is for DAI members, our families, our friends and DAI supporters. Everyone is welcome.

  • Tuesday, December 22, 2020 (USA/CA/UK/EU)
  • Wednesday, December 23, 2020 (AU/NZ/ASIA)
Reminder: this is one event, set in many time zones
The zoom link to join will be provided closer to the day.
The cafe will commence with a welcome and time for introductions, followed by a quick update on the latest DAI news from the board. It will follow with lots of fun and friendship!

Christine and Janet have planned a fun programme, including a surprise visit from Father Christmas, live music from Graeme Atkins, and a beautiful song written by DAI member James McKillop and performed by his friend, Callum McNab.

Wally will hopefully keep us all on track with his wonderful sense of humor.

Tuesday December 22, 2020 (USA/CA/UK/EU):
  • 1:00 pm PST
  • 2:00 pm MST
  • 3:00 pm CST
  • 4:00 pm EST
  • 9:00 pm GMT, UK
  • 10:00 pm CET, Germany
Wednesday December 23, 2020 (AU/NZ/ASIA):
  • 5:00 am Perth AU/Singapore, SGT
  • 7:00 am AEST, Brisbane
  • 7:30 am ACDT, Adelaide
  • 8:00 am AEDT, Sydney/Melbourne
  • 10:00 am NZDT, Auckland
Our virtual Cafe runs for up to 1.5 hours; check your time here if not listed above.

We look forward to seeing you very soon!

Christine, Janet and Wally
On behalf of the DAI Board of Directors
Dementia Alliance International

Support our important work with a donation

Note: we sometimes use voice recognition software for correspondence​ and newsletters; ​​hence there may be some grammatical errors or spelling mistakes, for which we thank you for your understanding.

 

Jerry Wylie and the Dementia Warriors #DAM2020

Today was our monthly Cafe Le Brain, and unfortunately for everyone, one of the co hosts’ internet died, so it was a rather disjointed cafe! We had a few topics on the agenda, including with Jerry Wylie’s permission, watching a video made about setting his local support group, called the Dementia Warriors.

Jerry Wylie, USA

Therefore to support those who missed out on the video at our Cafe, for Day 16 of Dementia Awareness Month #DAM2020 #WAM2020, we are not only adding that video here, we are highlighting Jerry’s journey from diagnosis to now, by posting two videos highlighting his incredible advocacy.

The first is a video recording of a presentation he gave at the ADI conference in Chicago in 2018. The second is a video that was made about setting up his local support group. It has been an incredible journey to partlt share with him; from diagnosis, to depression, to renewed purpose.

Thank you Jerry.

We are so glad DAI was the catalyst to help you see there is still a good life to live, in spite of dementia.

Jerry presents at the ADI Conference in Chicago

As a keynote speaker at the ADI Conference in Chicago in 2018, Jerry shared his deeply personal story, which included him sharing how he had been depressed and even suicidal after his diagnosis, and his passion became one of helping to stop other people’s lives being thrown in the bin after their diagnosis like his was!

People who become empowered to live positively and with renewed meaning and purpose is exactly one of the outcomes the original founders of DAI dreamed of. Life is short, so DAI works towards actively supporting people to get back to living their own lives, and also to have fun again.

Jerry Wylie, speaks on founding the Dementia Warriors.

Jerry often said that joining DAI saved his life, and attending a support group over zoom was the first time he had smiled or laughed since his diagnosis. He is now living the his life with true purpose ad passion, and we all applaud and congratulate him for having the tenacity to keep advocating, until this particular dream was achieved.

Well done Jerry, we hope other members may be inspired to follow you, and we are all very proud of what you have achieved, and how you continue to support families facing dementia.

Read the brochure about Jerry’s exciting Dementia Warriors support group.

A story of Walls, Connections & Merry-go-rounds, by Wally Cox

Wally Cox, who is a DAI Board member and peer to per support co-host presented this video presentation at our recent Café Le Brain.

This moving story of love, and his role as a care partner for is wife, and then the transiton from husband and care partner, to himself needing care and support since his own diagnosis of dementia.

“There is no greater agony than bearing an untold story” (Maya Angelou).

This is Wally and Pat’s story.

A story of Walls, Connections & Merry-go-rounds.

By Wally Cox

Being a good care partner is not easy. That is a lesson I learned. 

Pat and I first started dating when we were teens. Determined to get married, we announced to both sets of parents, “We are getting married next Saturday and we sure would like you to come.” I assured them that I had a job that paid 50 cents an hour over minimum wage, an apartment, $75 in the bank, a brand new water couch in the living room (Hey, it was, after all, the 70’s), and my ’65 VW bus was paid for, free and clear – so there! But imagine, they did not share our excitement. In fact, it was quite the opposite. Undoubtedly it was because we were marrying the day after Pat graduation from high school. But we were in love, did get married, and created a wonderful life together, raising three kids. Things were going great until we were blindsided.

It was 1994 when Pat had first become ill. She needed me. And indeed as a doting husband, I undertook all the mechanical aspects of her care. I took her to the best doctors, I made sure she had nutritious food to eat, I helped with medications to ease her pain, and I researched symptoms at the library. However, my emotional response became embroiled in frustration, fear, and self-preservation. When she needed me to sit with her, hold her hand, look into her eyes and tell her I loved her, I became distant, detached, and unavailable… I had gained so much knowledge with so little wisdom.

Sinking in the midst of my own crisis, I didn’t understand why this disconnect was happening. I reached out to a counselor and learned that I was exhibiting a common behavior. Through counseling, I learned that I was defending myself against loss. I had made this all about me instead of all about us.

You see, I was building a wall, stone by stone, of emotional detachment. I was creating a distance between us that had never been present before.

I was hardening my heart so if Pat did not survive, it would not hurt as much. Heroes run into danger and trouble to help those in need. But in my fear, I chose to turn away. I didn’t leave, but I disconnected, building a wall to shield myself from the heartache that was coming.

So much for being a hero in time of need.

In order to break down this wall, I had to take a risk and become vulnerable. I had to let Pat into the darkness of my pain and thoughts:

  • What would I do if she didn’t survive?
  • What would become of our family?
  • Would I ever find love again?
  • And if I did, would that be a betrayal?
  • Could she forgive me for my selfish reaction in the midst of her crisis?

Together, and with professional help, we worked out these issues and built an even stronger bond than we had imagined possible. My fears were normal, our love enduring, our connection complete, the wall demolished.

Lesson learned.

It was seven years later that Pat battled her illness once again, this time ending up in the ICU in grave condition. The doctors told me she could not survive and to call our children home to say their goodbyes. While this was a very difficult time in our lives and as hard as that was to hear, I knew this time I did my very best to stay connected to her – heart to heart – through this second bout of her illness. She and I were prepared, as well as anyone could be, to see our journey together through to the end. I was determined to be the best care partner – both physically and emotionally – a husband could be.

Well, God had His plan for us and our future. It was a miracle Pat survived, and it was a miracle that I had become the husband and care partner she needed.

Walls…

Walls – so good at keeping things out, and so good at keeping things in.

I learned so much through this journey about being a care partner. So, imagine my surprise when I found myself building walls yet again, but now I was on the other side of the scenario as a person who needed and still needs care.

It was at work that I first noticed something was amiss. Sometimes, I didn’t recognize clients whom I had seen just the previous day, computer icons didn’t make sense, and I would repeat questions I had just asked. Simple tasks were no longer so simple. Finally, one day a client who was clearly exasperated by my pacing and confusion asked me, “What are you.. stupid??”  Wow! That hurt! No, I thought, not stupid, but something definitely was wrong.

I was only 60 years old, I had built a successful insurance practice, and yet tasks that I had previously done practically on autopilot suddenly became almost impossible to complete.

My doctor sent me for a neurological workup, where I was given the diagnosis of Mild Cognitive Impairment with the instructions to go on home and return in one year. Boy, it sure didn’t seem so MILD to me. During that year, I made more and more mistakes at work, I was having trouble with decisions at home, and I started feeling awkward in social situations.  Worst of all, I no longer trusted my own judgement.

At my next neurology appointment, I was given the diagnosis of Alzheimer’s Disease. Three generations of dementia: my grandmother, my father, and now me.

I left the job I loved, resigned as a school board member, and quit almost all social functions. After resigning from the school board, I received a call from the local newspaper requesting an interview to discuss the resignation. Instead of taking advantage of this perfect opportunity to speak about Alzheimer’s Disease, I just told the reporter I was ill and I didn’t want to talk about it. When he persisted for more information, I pleaded with him to just leave me alone. Yes, once again I was building my wall.

There I was, isolated by my own choice, hiding from my illness, afraid what others would think. I went into hiding behind my wall… and why?… because of the stigma and fear I felt of having Alzheimer’s.

In the book “Why Many People Abandon Friends and Family with Dementia – and Shouldn’t”, the author states that dementia today is treated like cancer was in the 50’s and 60’s, spoken of in whispers and sometimes kept from its sufferers. You know, like “Aunt Phyllis has the Big C but we are not telling her. Shhhhhhh….. Well now, I had the Big D, Shhhhhhhhh… don’t tell anybody.

 Pat recognized what I was doing and helped me knock that wall down. She found the Alzheimer’s Association in Santa Rosa and signed us up for the Early Stage Support Group. I had my doubts about this group. She signed me up for a support group online with DAI, Dementia Alliance International, a forum run by, and for, those of us with dementia. I had my doubts about this as well.

But I was surprised to discover people talking about dementia openly, unashamedly, and without apology. Counselors, care partners, and people who needed care helped me see that my life still had purpose… hope… which I was missing. I learned again to tear down my wall.

Walls… only the first lesson…

And then Pat and I had to move on to the second lesson…

The Merry-Go-Round.

When I was a motorcycle riding safety instructor, one of the most important lessons I taught was, “Look where you want to go.” You see, we naturally veer in the direction we are looking. I would instruct new riders to pick the best path to follow and aim for it. Don’t focus on the things you want to avoid, the tree, the rocks, the potholes. Look in the direction you want to go. The same is true when facing an illness.

When I was diagnosed, our family doctor told my wife and me to go home and “get our affairs in order.” What did that mean to me? How did I respond? Well, at first, all I could focus on were the depths of the diagnosis, losing myself one bit at a time and all that entailed.

It was as if I was on a merry-go-round, standing on the outside edge as it was spinning around, staring resolutely at the center pole where I saw my future – the big D’s – Dementia, Despair, Depression, Disappointment, Death. I found myself not being able to see anything else, whirling in circles, becoming ill from worry, stress and concerns.

Yet, meanwhile, as I focused on the center of the merry-go-round, behind and surrounding me were all the good things that I would have seen if I had just turned around and looked out instead of in. I was looking at the tree, the rock, the pothole – my Alzheimer’s dementia.

I needed to look outward from this merry-go-round, to see another path, the rest of my world — filled with faith, family, friends, music, love, adventures, art. I needed to recognize that I am more than my diagnosis, that I am more than my illness. Yes, there are things I truly cannot do, but there are many things I can. That is the path I have chosen.

Pat and I have started traveling in our RV, seeing new places and making new friends. I started expanding my interest in art, with my sketching and watercolors. I do more of the things I can to help in our daily lives, and Pat does more of the things she must. But it works.

So where are you and your loved one on the merry-go-round? Are you staring inward at what cannot be controlled or outward to what is possible?

So where are you with your emotional walls? Are you building up, or are you tearing down?

Emotional walls – merry-go-rounds- these are two things that do affect how we wake up in the morning; they do affect how we go through our day; they do affect how we relate to other people; and they do affect how we appreciate the things we have.

We need to recognize and work toward building connections, slaying fear and opening our hearts, having a spirit of gratitude. This is a daily choice.

We need to recognize that the merry-go-round of life is always there. But while we are alive, we can still choose to look in or to look out. This is a daily choice.

The choice for Pat and me is to love, live, laugh, and connect.  What do you choose?