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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 It provides a thorough listing of specific guidance for various care and treatment options when one can no longer represent oneself.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.  

 

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.

Can We Talk?

courtesy of Bizarro Comics

They say there are only two things we absolutely have to do: Die and pay Taxes.  April 15 is traditionally Tax Day, and now the day after, April 16, has been designated National Healthcare Decisions Day, in an effort to get people to plan for their dying as well as they do for their taxes.

Elephant in the Room

Due to this pandemic year of hearing daily numbers of Covid deaths and constantly seeing scenes of people suffering and dying, we have a fresh awareness of death.  This heightened awareness is actually helping us talk about death and prompting many families to discuss what they want their dying to look like.  The “elephant in the room” (that thing that we are all thinking about, but not talking about), is actually being acknowledged much more now.  It remains to be seen if 2021 will turn out to be the year more Americans than ever will have embarked on advance care planning and completed their advance directives (ADs).

What is important to you?

If you are serious about telling your loved ones what you would want at the end of life, we at End of Life Choices California (EOLCCA) are here to help you get the conversation going (the most important part) or show you where to find the appropriate forms and what to do with them.  It’s what we do.

Ask yourself: What is most important to you?  What matters most to you?

We are here to help you share with your loved ones exactly what you would want if you were unable to speak for yourself.  Completing an AD is a “game changer” for you and your family; it is a gift, it is liberating.

Let’s bring that “elephant” out of the closet and shine a light on dying:  Let’s admit that someday we are going to die, hopefully not soon, but that we all eventually die.  Let’s get comfortable talking about how we would like to die; where we want to be, who we would like to be present.  Let’s have that conversation about death with our loved ones and write down what we would want in an AD.  The sooner we do this, the more likely it is that our wishes will be honored.

Our family and friends will be grateful to have had the opportunity to help us achieve our goals.

Having the conversation about end of life choices
Take these steps today!

Please go to our website where you will find an advance directive form to download and complete.

Sign it, have it witnessed, and give copies to your loved ones and your physician.

If you have any questions or would like help completing an AD, please email us at info@endoflifechoicesca.org and let us know how our volunteers can help you.