REQUEST SUPPORT | DONATE | BLOG

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 It provides a thorough listing of specific guidance for various care and treatment options when one can no longer represent oneself.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

++++++++++++++++++++++++++++++++++++++++++++++++++++

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.  

 

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.

Cycles of Living and Dying…

Originally published March 4, 2020 and reprinted with permission

Sebastian entered the world eight weeks ahead of schedule, weighing all of two pounds. His lineage is Korean/African American/German, which may offer an insight into how determined, individualistic and utterly beautiful he is. He had emerged from NICU (the neonatal unit at Kaiser) and gotten his fighting weight up to nearly six pounds when he first came to visit my husband Bud.

Bud w Sebastian 1.3.19 

 

 

 

Sebastian (unimpressed) meets his honorary grandfather

That was about mid-January. In early February, about the 11th, Bud’s congestive heart failure of many decades took a sudden downward turn, and by Valentine’s Day he was in his last hours of life on this planet. Sebastian came to visit – well, he brought his parents too, but they are not central to this story.

His mom plunked Sebastian onto Bud’s chest, as he lay breathing heavily on his hospital bed, red balloons snagged from the downstairs dining room floating around. The last deliberate movement I can associate with my husband as he died was his left arm making a sort-of patting gesture toward the tiny pajama-clad bundle of new life on his chest.

We should all sign up for this: old life ending as new life begins. Seeing life as a natural continuum might not make much difference as we enter, but it could help us take more control of our exit – simply by confronting the fact that we will indeed exit. I like to think that my husband’s last moments were somehow heartened by the certainty that life does, and will, go on.

Bud was fortunate in other ways. Having reached his 90th year, he had been vocal about his readiness to die and had expressed his wishes clearly in writing. There are many good options now: hospice or palliative care, enforceable documents like DNRs and POLST forms (Do Not Resuscitate, Physicians Order for Life Sustaining Treatment,) etc. POLST formAnd in a growing number of states there is a right to confront mortality by hastening one’s dying. In California where I live there is the End of Life Option Act which gives terminally ill, mentally competent adults the right to ask their physician for life-ending medication. For many, that is a way to meet life’s end with extraordinary peace.

A relatively new organization, End of Life Choices California, is part of this continuum, this big picture of Birth/Life/Death/Peace. EOLCCA provides information and personal support re California’s End of Life Option Act and all other legal end of life options. It is among several nonprofits dealing with critical aspects of end-of-life care – and helping us all see more clearly that death, like birth, is a universal experience.

When training, recently, to be an EOLCCA volunteer I met a remarkable fellow volunteer named Lori Goldwyn, who may understand both ends of this continuum as well as anyone around. After earning an M.S. degree in Education and working in women’s health for several years, Lori had a homebirth 30 years ago that led her to become a childbirth educator and labor doula. “I came to believe in the value of supporting the natural process as much as possible,” she says, “for both the mother’s and her baby’s sake. A woman in labor contends not only with the pain of labor,” Lori adds, “but with the intensity of realizing that there’s no way out. She can’t escape, quit or divorce this one. The only way out – as is true with the rest of life – is through.”

Eventually the link between natural birth and natural death became clear. “While being with my mother in an inpatient hospice in 2010,” Lori says, “I was struck by the similarities between the birthing and dying experiences.” That epiphany led to her working in hospice and palliative care, as an End of Life Doula, and now also as a volunteer with EOLCCA. Her website, Comings and Goings, reasserts the validity of this continuum with this subtitle about Doulas: Caregivers to those on the threshold points of our Earthly existence.Moon & clouds

“When we get that terminal prognosis, or as we lie dying,” Lori says, “there’s no escaping this reality, this ultimate inevitability.” She quotes the Italian director Federico Fellini: “All we can do is try to become aware that we are part of this unfathomable mystery. We are a mystery among mysteries.”

As he grows, I think Sebastian will also understand this mystery, this continuum, as well as anyone. Sebastian started off in a softly-lit incubator watched over by his mother, a nurse. Weeks later, his honorary grandfather was leaving the planet. And they were able to trade greetings on their journeys.

 ~~~

Fran Moreland Johns is the author of Dying Unafraid (Synergistic Press), a nonfiction book telling of people who did just that.  Inspired by her personal experiences, Dying Unafraid led to other published work on end-of-life issues. Continuing her leadership and long-time activism in this field, she has recently joined the End of Life Choices California Board of Directors and serves as a client advocate volunteer with EOLCCA in Northern California. 

End of Life Choices California offers information and non-judgemental personal support to anyone seeking help managing end-of-life care planning or decision-making in California.  Please visit our website www.endoflifechoicesca.org for more information. To speak with one of our volunteers, please call 760-636-8009.  All our services are free of charge.

Please contribute now to support our work. Thank you!

In the Middle of a Revolution on Death

The Revolution is upon us

The recent Washington Post article, “We’re in the middle of a revolution on death” is gently thought-provoking and describes a trend that we hope will become the reality for more Californians.  Specifically, those who are facing terminal illness and wish to spend their last days not in an induced coma, in agony tethered to life support in a hospital, or suffering excessive medical intervention and expecting a miracle. Instead, these patients are offered the option to die in their own home with access to medical aid-in-dying and surrounded by loved ones.  In California, the good news is that medical aid-in-dying became available to the terminally ill via the End of Life Option Act in June of 2016. However, the reality is that many of those who might choose to access this law have neither the information nor the support they would need to obtain the prescription when it could make the most difference.

“Don’t tell me what I have to do.”

As Dick Shannon, the subject of the new HBO documentary “Alternate Endings”, released by HBO August 14, 2019, plainly states:

“My observation about the way people die, at least in America, is they are not allowed the opportunity to be part of the process.  For my way of thinking, the part that bothers me immensely is not being allowed to be part of that process. It’s my death. Go with what you believe, but don’t tell me what I have to do.” 

Our Mission

That, in a nutshell, is the mission of End of Life Choices California: to bring more attention to these issues in our populous state. We aim to make sure that BOTH those seeking medical services and those providing medical services are working with the same information and understanding when it comes to these critical discussions about end of life decision-making.  Our goal is simply to help more Californians, in clear, honest and informed communication with their physician and family, decide for themselves how they will die with their dignity intact and leave a peaceful legacy for their loved ones.

I am looking forward to seeing this new documentary.  It looks like it will be just the kind of film we will want to include in our resource-rich website, endoflifechoicesca.org,  which is designed to assist anyone (patients, hospices, nurses, physicians, journalists) seeking information about California’s End of Life Option Act.  The site, also offers other end-of-life planning tools to help individuals take control over how they die, in the same way they have engaged in their life.

End of Life Choices California offers information and personal support to anyone seeking help facing end-of-life decisions through our state-wide volunteer program. You can read about our services here.