What the World Needs Now

As End of Life Choices California completes its second year (first full year!) and we approach this coming new one, I am struck by what an immense undertaking beginning and developing EOLCCA has been. Claudia, Lynne and I have been running this non-profit organization as volunteers, and we continue to be successful in developing an amazing team of Client Advocate Volunteers who are trained and poised to help any Californian seeking information and/or support in their end of life wishes, at no charge.  It is surprising how many people continue to be unable to access the information they need within their own health care systems.  On the flip side, we are grateful for those systems that can and are willing to provide such information and support.

End of Life Choices California

It’s been a difficult year globally.  Everyone is feeling the effects of Covid-19 and the trickle down economic effect of the pandemic. Politics in the US, and elsewhere, has been tumultuous and painful to watch.  One could become overwhelmed and feel undermined by it all.  I think the feelings must be similar to someone who is facing a terminal illness.  A whole life can change in an instant with a terminal diagnosis and the ensuing challenges that come.

Volunteer powered organization

An Act of Love

I am full of gratitude and hope in the work that we do. I believe that being of service to others is what makes the difference in the world.  I googled “quotes about being in service” and there were so many good ones, I couldn’t pick a favorite.  But for me, being of service is an act of love. And I am full of gratitude for our clients who give us the opportunity to engage in these acts of love, to our volunteers who step up to meet the needs of our clients, and our amazing Board of Directors who are donating their time and energy to help us grow in a sustainable way.

 

What the World Needs Now

I awakened this morning with a song in my head and heart that I hadn’t heard in a long time.  I’m sharing it with you now as I think, even though it was recorded in 1966, it is still relevant today and portrays hope for the future. The song reflects my personal belief as to how we are going to overcome the woundedness and grief of this pandemic and of 2020 in general.  There are nuggets of truth and joy and peace and wisdom in the woundedness if we look deeply enough.

What the World Needs Now – Dionne Warwick

I envision a better year for us ahead in 2021. May you find those nuggets of wisdom and peace in your own life.  And, if you feel inspired to help an organization dedicated to being of service to the terminally ill and their families, we would be truly honored to accept your volunteer application or donation of any size.

With gratitude,

Judy

El Día de los Muertos

Dear Readers,

A few years ago, I happened to be visiting Mexico over October 31 – November 2.

As luck would have it, it was the annual event of el Día de los Muertos. I didn’t know much about it but it turned out to be one of the most interesting and amazing cultural, community events I have ever witnessed.

Dia de los Muertos Alter

I was in the small beach town of Sayulita, on the Pacific coast.  On the first day of the celebration, as dusk approached, everyone in the village came out to decorate their yards. Candles were lit, and altars set up with photographs, drawings, and piles of food or bottles of tequila to reflect remembrance and recognition of family members who had died.  We walked over to the community graveyard and it was beautiful with hundreds of candles everywhere and people dressed in colorful costumes and masks.  There was no mourning, only joy and laughter and deep cultural connection.

I think what I found so personally moving while observing this thousand-years-old tradition was how death (and therefore life) were being celebrated with such joy in honoring and remembering loved ones. Everyone was smiling and laughing and playing fun music and inviting us to celebrate with them.

The Day of the Dead originated several thousand years ago with the Aztec, Toltec, and other Nahua people, who considered mourning the dead disrespectful.

flowers and skull for Dia de los Muertos

I have never forgotten this experience and since then, every year on that day, I too participate.  I assemble in one place pictures of my loved ones who have died, including beloved pets, light a candle and remember them with love and gratitude.  I invite you to do the same if it so moves you.

In our work at EOLCCA, the Day of the Dead resonates so clearly with the dignity, family presence, and peace we wish for our own loved ones, as well as those reaching out to us here in California who are facing terminal illness.  We continue to help our clients and their families navigate the health system in their final months and obtain the end of life care they desire.  We gladly accept donations to help us continue this much needed service.

If (after some normalcy returns to our everyday lives) you ever have the chance to visit Mexico for this one-of-a-kind holiday, I strongly encourage you to go for it!  Here is a link to a National Geographic article that will tell you all about it.

Our Favorite Music

Dear Friends, 

In this continuing and unprecedented time of disruption and uncertainty, we wanted to share some of our favorite music with you.  Music has been known for centuries to be a healing balm for the heart and soul in times of need, just as it can be uplifting and joyous in times of celebration.  A 2014 article from Psychology Today discusses, “Does Music Have Healing Powers?” and yes, we know it does.  

Calming, Inspiring, Uplifting

I asked our board members and volunteers to send me their favorite pieces which they find calming and inspiring or uplifting, and below are the offerings I received.  We hope you find them to be enjoyable, healing and supportive to you and possibly anyone sharing space with you.

We are still here for you and others

In the meantime, remember that EOLCCA is still here for you or any friend or family member who might currently need support facing end-of-life decisions.  Lately, in addition to spending a lot more time on the phone with our clients seeking EOL support, we have been helping people understand how to lay out their end-of-life wishes with an Advance Directive (Assigning Healthcare Proxy and Living Will).  Here is a link to our website to find information about these matters.  Please call or email if we can be of assistance in any way.

To please, enjoy some of our favorite healing music, perhaps while filling out or updating your Advance Directive!  We wish you and your loved ones peace, hope and health.

Our music selections

Two last things: 

While not music, one of my favorite poets, Mary Oliver, crafts words that sound like music and so I wanted to share an interview with her by Krista Tippets from On Being “Poetry for Tumultuous Times”.  It is a delightful interview and sure to warm your heart. 

When you load the page, you have to scroll down a bit and find the interview with Ms. Oliver.

Interview with Krista Tippets at: onbeing.org

Poem

And another poem to end with, and blessings to all…

For the Interim Time 

When near the end of day, life has drained
Out of light, and it is too soon
For the mind of night to have darkened things,

No place looks like itself, loss of outline
Makes everything look strangely in-between,
Unsure of what has been, or what might come.

In this wan light, even trees seem groundless.
In a while it will be night, but nothing
Here seems TO believe the relief of dark.

You are in this time of the interim
Where everything seems withheld.

The path you took to get here has washed out;
The way forward is still concealed from you.

“The old is not old enough to have died away
The new is still too young to be born.”

 

You cannot lay claim to anything;
In this place of dusk,
Your eyes are blurred;
And there is no mirror.

Everyone else has lost sight of your heart
And you can see nowhere to put your trust;
You know you have to make your own way through.

As far as you can, hold your confidence.
Do not allow your confusion to squander
This call which is loosening
Your roots in false ground,
That you might come free
From all you have outgrown.

What is being transfigured here is your mind,
And it is difficult and slow to become new.
The more faithfully you can endure here,
The more refined your heart will become
For your arrival in the new dawn.

From  To Bless the Space Between Us”  by John O’Donohue

On COVID-19, Flexibility and Compassion

We share this thoughtful blog by EOLCCA Board member Fran Johns, a prolific thinker and writer. While much has changed in the mere 11 days since she wrote this piece, we wanted to share her calming perspective as we go about the hard work of isolating ourselves physically from our normal way of living.  This is also a gentle reminder to all, that EOLCCA volunteers stand ready and available to continue responding to terminally ill individuals and their families seeking information and support to determine their own end of life choices even as this pandemic has altered so much in our daily lives.  Many of those whom we can continue to help during this pandemic are suffering from unrelated end stage cancer and neurodegenerative diagnoses with a 6 months prognosis and need our help now. 

We can be reached at 760-636-8009 or email info@endoflifechoicesca.org. We are here for you.

 

I don’t know about your neighborhood, but Covid-19 is making life interesting here in the San Francisco Bay Area. Difficult for many, devastating for some, and interesting for the rest of us. As of this writing (I recommend the CDC site for accurate data on other areas, other updates) we have sped past the first hundred confirmed cases in the state, and who knows how many of the 10,000+ Californians in self-quarantine are also my Bay Area neighbors.

This little virus brings with it a large bunch of life lessons. Some of them are shared here, as a public service.

First off (I hate to bring politics ever into this space, but what can you do?) if you ever believed anything said by our commander in chief, this is a good time to mend your ways. Covid-19 is not a Democrat hoax, it is not going to disappear in a short time, you really shouldn’t go to work if you’re sick, a vaccine is at best many months away, and good luck finding those test kits that anybody who wants can get. This is only a life lesson in the sense that, in today’s crazy information-overload reality, Truth is hard to find. So, Life Lesson #1: Seek Truth. Read several newspapers if you still read news. Otherwise, visit the CDC site and scroll through more than one mainstream news source, please; do not believe Facebook will give you Truth. Watch PBS and occasionally Fox News; if one disseminates truth, the other reinforces your neighbor’s version of truth – and we’re all in this together.    Covid-19 greenie

Other life lessons are happier, and equally easy to learn. For instance, at my church we very quickly learned to replace hugs and handshakes with fist bumps and peace signs. Not as much fun, but whatever. The ushers are equipped with bulletins and hand-sanitizer. Choir members last Sunday spaced themselves three feet apart, which looked rather elegant – but they sounded the same, i.e. gorgeous. We also learned translations of the word Covid into Hebrew and Yiddish, which I have already forgotten, and which doesn’t matter anyway since the name was chosen by the World Health Organization thusly: Co and Vi come from coronavirus, D stands for disease and 19 (as in 2019) = the year the first cases were seen. To connect all this: I belong to a Presbyterian church that is heavy into hugs, scientific truth and interfaith understanding.

As to flexibility, this viral pandemic is teaching us, wisely, not to be so rigid about stuff. I was dismayed when the San Francisco Symphony cancelled a concert on my regular series that I really wanted to hear; and the political roundtable at the Commonwealth Club, a favorite regular program at which I always volunteer, similarly disappeared. But symphony season will resume in good time, and do we really need to talk politics late into the evening when it invariably produces nightmares? Sleep is better. That long-planned trip to Tucson in a couple of weeks? Probably not the wisest thing for my octogenarian cardiovascular system. Purpose of trip, however, was to join my daughter for a visit with a childhood friend of hers (whose mother, lost to cancer decades ago, was a good friend of mine) – and they can definitely have a ball without me.

So take deep breaths and wash your hands. We and the planet will survive in good time.

Moon & clouds

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!

The Beauty of Choice

Introduction:  This beautiful piece was written by one of our Client Advocate Volunteers, Jill Lloyd, in southern California. We are honored to be able to share it with you. We continue to expand our volunteer base and if you are interested in becoming a volunteer, please let us know. And, if you or someone you know are suffering from a serious or terminal disease and wish to discuss all the end of life options, without judgement and with great compassion, please give us a call. We can help. – Judy

Choice is the most powerful tool we have.  It defines how we live but it can also define how we die if we are ever in the situation of facing a terminal illness.

Both of my parents chose to die on their own terms.  But this was many years before California’s End of Life Option Act became law (EOLOA).

And it was not so much about bypassing the suffering of a terminal illness, far from it actually, but about their personal faith.  They were both devout believers in Christian Science, a religion set on beliefs and practices belonging to the metaphysical family in which sickness is considered an illusion that can be corrected by prayer alone.

So even though neither of them was diagnosed since they did not go to the doctor, they faced their illness relying on prayer.

My mother died at age 35 of breast cancer.  I was 5 years old. I had little understanding of the circumstances other than my child’s perspective: religion was responsible for my mother’s early death.  But I also had anger toward her for choosing such a path.   

Years later my father became ill.  He was 67 and started to have symptoms of what appeared to be congestive heart failure.  I had become a hospice volunteer by then and having seen many people at the end of their life, though not a doctor, I was able to recognize the signs of someone nearing death. I fought with him to get treatment at least to alleviate some of his symptoms of pain and breathing difficulties, but he refused and basically said to me “This is my choice.”  I still had old anger regarding my mother’s death, and now it was compounded by my father’s choice to do nothing.  He recognized my concern and fear of him dying but wanted me to know “This is my choice. It doesn’t mean you should do the same if you were faced with a comparable situation, just that we all have to honor each other’s choices whether we agree with them or not.”  That can be tough to accept when witnessing the suffering of a loved one.

Prior to my father’s death my sister died at age 27 from malignant melanoma.   She chose the medical route and opted for any and all treatments available until the end, and even when there was no hope, doctors continued to “experiment “ with her.  She suffered quite a bit and died in a hospital.

I experienced several other deaths of loved ones, all of which had made different choices in their end of life care.  It was the unnecessary suffering that bothered me with several of the choices.  

My best friend Gayle of 50 years, who was the sounding board for me through all of my losses, knew my anger and disappointment at my mother’s choice, my father’s choice and my sister’s choice even though she kept fighting for her life.  My sister didn’t want to have the same experience as our mom, so she opted for medical treatment until the very end. Gayle and I talked about what we would do if we were faced with the same situations and followed the progress of the EOLOA as it went through the many stages and wondered if it would become law.  

Then Gayle was diagnosed with pancreatic cancer, the same week the EOLOA did become law in June 2016.  She saw that as a gift in some way as she realized quickly that there was no hope for her survival and felt the only bit of control over her life she had left was to choose how she wanted to die.   She expressed gratitude that the choice for Medical Aid in Dying was available to her as she felt it gave her the option to live fully until she was no longer able to, and then choose a peaceful transition.

She asked me to assist her in the process to complete the required steps to access the law.  She was with Kaiser already, and that made things go smoothly as they already had a patient advocate in place, doctors that would prescribe as well as serve as consulting physicians.  She also chose not to go on hospice care. Rather, she wanted to monitor her illness and select the best day to die based on the progress of her illness. She wanted to enjoy life as much as possible until her symptoms would start to impact her ability to do so as well as care for herself.

While I was supportive of whatever she wanted to do, I was heartbroken and would ask her to rethink it.  She never hesitated in her decision making and stuck to the desire to end her life on her terms. She found great comfort in that.

It was three months after her diagnosis that she started to feel many painful symptoms of the cancer’s progression and set the date within the week.

The morning of her death, which she asked me and another friend to attend, she got up and fed her animals, had a light breakfast and had a heartfelt conversation with us.  She expressed her gratitude for the friendship and for honoring her choice without judgment. She died peacefully and quickly, which preempted any long-term suffering.

I have reflected on my parents’ and sister’s deaths and how they wanted to live their final days.  All of them made different choices. All of them were living and dying on their terms, regardless if I agreed with their choices or understood them. And who knows if they would have chosen the same route as Gayle, had the law been in place back then.

But having been through this experience with Gayle, I came to have a better understanding and acceptance of these choices.

When I left Gayle’s house the day she died, I spoke with a friend of mine about what I had just experienced.  I was sad but also felt honored to have been in that sacred space and time with Gayle. And my friend said, “what you did was an act of love… pure and simple”.

When we love without condition, we honor people for who they are and the choices they make whether we agree with them or not.  It’s tough to watch our loved ones suffer. Only they can decide what is truly right for them, just as we want the freedom to choose what feels right for ourselves.

But that’s the beauty of it all.   We aren’t here to agree or understand other people’s choices; just to honor them as part of our unconditional love for them.

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 www.endoflifechoicesca.org for more information or 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!