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Your Voice – Lessening the impact of dementia

The joy of growing up for me was to be on my own, make my own way, and be myself. Of course, accomplishing these goals is more than the compilation of many birthdays, and is often not easy. Yet multiple decades later, I now hold dear many values and viewpoints which make me–me! And the same is true for many of us, across all walks of human life. The opportunity to represent and guide your own life is an innate part of being yourself. 

When Dementia Takes Hold

This treasured aspect of humanity is impacted when dementia develops and takes hold.  Medical professionals often talk about Alzheimer’s disease (the most common form of dementia) being one of the most feared diseases because of this impact to “self”–self-representation and self-determination.  

I witnessed this first-hand, watching my grandmother deteriorate from Alzheimer’s disease. Like too many others, the disease slowly but surely removed the ability for my grandmother to represent herself. She could no longer talk and had no capacity to express herself–her wishes, views, or needs. My grandmother passed away after years of 24×7 care in different nursing homes which kept her alive, but sadly were not informed to customize their care to her wishes and needs.

Mother with dementia and daughter
Representing Ourselves Now

While we do not yet have a way to fully avoid the future possibility of debilitating dementia, we do have the opportunity to communicate our own wishes, views, and needs. We can represent ourselves now. The following resources are ways to communicate to both loved ones and health care providers: 

A health care directive for dementia

Developed by Dr. Barak Gaster via the dementia-directive.org and available for download from our site, this directive describes three levels or stages of dementia impact. For each stage, you may select from a set of three goals to communicate the type of care you would want to receive.    

A letter added as an amendment to a general health care directive

Created by author Katy Butler, and shared via the Conversation Project organization, this letter can be used as-is, or as a template and modified per your wishes. It provides a thorough listing of specific guidance for various care and treatment options when one can no longer represent oneself.

A dementia directive or amendment serves to clearly inform loved ones and health care teams.  And though currently neither is legally binding, those who are in a position to care for you will be enabled and encouraged to honor you by aligning future care to your views and wishes. Your own voice will be communicated and clear. 

To read more about this topic, please visit our website.

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Becky Oliver is a volunteer with EOLCCA.  Her professional life has been spent as part of Silicon Valley’s tech industry.  Outside of work, her personal passions include contributing to end-of-life causes, with a specific interest in the nature of care for the aging and those nearing end of life.  

 

Looking Forward in 2022

This month, End of Life Choices California (EOLCCA) celebrates the completion of three years of service to the people of California.

Dear Friends and Supporters,

I am proud to share with you our accomplishments in 2021 and our vision for 2022.

EOLCCA volunteers worked diligently throughout 2021 to provide Californians the information and support needed to successfully navigate their legal end-of-life options. At the same time, we have been busy developing plans to expand our programs and services in 2022.

Today I am asking for your help.

Belief in our mission

Many of you have already offered your support in word or deed, and we thank you with gratitude for that support.

Because of your belief in our mission, we have been able to keep our commitment to provide educational presentations as well as services to clients and others at no charge, ensuring accessibility to all.

California poppies

In 2021, our Client Volunteer Program:

      • Onboarded and mentored 26 volunteers throughout the state who provide extensive phone support and client counseling, as well as bedside attendance for aid-in-dying;
      • Responded to and counseled 676 individuals and their families who reached out to EOLCCA for support, information and guidance;
      • Were present bedside (and even Facetime) for 8 clients who died peacefully with the support of our experienced volunteers;
      • Provided 24 presentations to community-based hospices and retirement communities about end-of-life issues and medical aid in dying;
      • Educated 12 physicians/pharmacies new to medical aid in dying who reached out to EOLCCA for our expertise.  These medical professionals are now prepared and available to provide medical aid-in-dying services to the terminally ill.
      • Tying this together is our user-friendly website, packed with information, which garnered more than 17,000 visitors in 2021 and over 1,000 followers receive our communications across various social media channels.

Expanding Our Impact

We are proud of our volunteers and of our accomplishments.

In 2022, we are committed to expanding our impact throughout the state. The majority of terminally-ill Californians still do not know about the End of Life Option Act nor about what end-of-life options are available.

This year EOLCCA will work to reach out to historically underserved communities, specifically communities of color and in rural areas. To this end we are actively seeking and recruiting multicultural volunteers to help provide end-of-life information and services to ALL Californians. Our goal this year is to expand our volunteer base while also providing educational programs in more underserved communities.

We need your support to make our work possible!  Please click here to make a contribution now.  Your gift at any level will help us expand our reach into communities where the need is great. Thank you for your continued commitment to our shared vision of a dignified death for all.

With gratitude,

Judy Neall Epstein
President and Founding Director
End of Life Choices California

Connect! mid-week group zoom session 1 at La Verne Church of the Brethren

The Culture of Dying:
Because we had such a positive response to the Dia de Los Muertos celebration Sunday, October 31 and learning about Latin American countries’ approaches to death and dying, we thought it might be helpful to look at how we in America approach death and dying.  So to that end, we invite you to participate in our virtual 3 part series: The Culture of Dying, where we can explore our own experiences.
What you will learn:
How varied our experiences of death may have been for each of us.  We will talk about how we remember and honor those we have lost and how much they impact our ideas about death and dying. We will become more informed about all the end-of-life options available in the US. We will learn about an additional option, medical aid in dying, available in California and 10 other states in the US.  We hope to create a very safe space where we can share our experiences and our hopes for a peaceful death and how we might want to be remembered.
Presenter: Lynne Calkins, Nurse Practitioner, retired, and constituent of LVCOB

Do You Have an Advance Directive?

Although conversations about Advance Care Planning may seem awkward at first, they often bring family members closer together. 

Talking about death/end of life is deeply personal. Sharing beliefs and desires with those closest to you produces a more intimate relationship.

It takes courage to have these conversations.

It demonstrates your love and deep caring for one another.

couple talking

Advance Care Planning is a process of conversations and directives for all adults that express your health care goals, values, and wishes in case a time arises when you are unable to speak for yourself due to injury or illness.

Here is one way to get The Conversation going:

Q:  Do you have an Advance Directive?

A:  Common responses to that question, with various levels of comfort: 

two men discussing advance planning
  1. A what?
  2. I should but…
  3. I think so?!
  4. Yes, but it needs to be updated.
  5. Yes, so glad!
  6. ……..Silence
    Which response is yours or that of your loved one?  If you would like to get busy creating your AD, get in touch with our volunteers at End of Life Choices California, and/or simply look on our information-rich website here. We will be glad to help you get going with this very important document.

Stefanie Elkins is a guest blogger and a Client Volunteer with End of Life Choices California.  She is also an Elder/End-of-Life Care Coach and Consultant.  Stefanie can be found at Be Present Care in the Los Angeles area.