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In Love, A Memoir of Love and Loss

I often receive requests to read and review books. As a result, I have quite a pile of books on my nightstand. And as an avid reader, this is a lovely problem to have. Amy Bloom’s book, In Love, came to me through a different channel. One of our esteemed board members, Fran Johns, recently wrote a commentary of the book that was published in March 2022. I read it, it piqued my interest, and I got the book.

Interestingly, I had just finished reading Still Alice, by Lisa Genova, and then watched the movie again. It had been a few years since I’d seen it and wanted to watch it after reading the book. An excellent story. So my brain was primed for Alzheimer’s disease (not literally!) when In Love landed on my nightstand.

 

Few Available Choices

I have been interested in, concerned about, and curious about Alzheimer’s disease for decades.  When I was in private family practice many years ago, I walked that path with quite a few patients and no matter what anyone tried, we really could only provide comfort care. Still Alice and In Love both depict the almost unbelievable devastation of Alzheimer’s disease. Not only to the patient, but to the family as well.

I thought Amy Bloom did a heart-wrenching job of sharing the experience of watching her beloved start to show early signs of the disease, becoming aware of the probability of the disease even before diagnosis, and finally accepting a clear understanding of what was happening and had been happening for years. She and her husband, Brian, were very brave as they confronted the issues and choices available to them based on their preferences and values.

Threading the Needle

I loved how personal the book is. I ached for them as they made plans, and then more plans, for Brian to find his peaceful death. I felt sad that they were unable to find that peaceful death in their own home and had to go to Switzerland to find medical aid in dying for early Alzheimer’s disease. As someone who has worked in the field of end-of-life care for over ten years now, it was still shocking to me to read her words about how poorly the US has constructed any kind of system for compassionate end-of-life choice. Yes, some states have medical aid in dying laws that allow physicians to legally prescribe medication to end a life. And people in those states are grateful for the choice.

But, as Amy Bloom said, accessing those laws is like ‘threading the needle”. Only a very specific cohort of patients are able to meet the requirements to access the law. A person must a) be mentally capable and understand the ramifications of the choice, b) be an adult and have a terminal diagnosis (life expectancy of less than six months) made by two physicians, and c) be able to self-administer the drugs.

 

In Love, A Memoir of Love and Loss, book cover
Walking Through This Process

Of course, many people, particularly those with terminal cancer, are able to access the law under these parameters with relative ease. They still, however, need to find a doctor who will prescribe the medication. Many people don’t, or can’t, find a physician to prescribe because they live in a rural area, or their own doctor either doesn’t know how to prescribe or doesn’t want to. The law allows for that. I am grateful to be part of EOLCCA as we continue to help people, at no charge, to walk through this process and overcome barriers they might run into. You can read about our services here.

For those who are not eligible for medical aid-in-dying and don’t wish to go to Switzerland, there are other end-of-life choices. We outline them here on our website and discuss these with clients all the time. One of those choices that people find most interesting is Voluntary Stopping Eating & Drinking (VSED), though it  is not everyone’s cup of tea, as Amy Bloom discussed. This is totally understandable. However, we have supported many people through VSED and with adequate support and understanding, it is often a very approachable way of embracing nature’s authentic way of dying. It is seen in many cultures and in the animal kingdom as well. For some comprehensive resources on VSED, click here.

I applaud Amy Bloom’s courage in supporting her husband’s wishes to leave this world in his own way, in his own time. What a beautiful gift she gave him with that support. And what a beautiful gift to us all with this lovely book. Thank you.

End of Life Choices California is a 501(c)(3) nonprofit organization that provides its services of support and information at no charge to our clients. If you would like to support our work, you can do so easily by clicking here. We are grateful for all gifts, large and small.

Please keep an eye out for next month’s blog post by one of our volunteers about dementia and the Dementia Directive.

Why I Do This Work

I’ll call her Hazel – because she didn’t give me permission to tell her story. If I had asked, though, I’m satisfied that she would have happily agreed.

Hazel was 78, and dying of lung cancer. Though hospice had been able to keep her largely pain-free, she was terrified of the possible end-stage symptoms of her disease and had chosen to use the California End of Life Option Act to control her dying. It was early afternoon on the day she had chosen to die. Hazel had said her goodbyes to family – mostly nieces and nephews in other states – and her two best friends had come to be with her at the retirement condo where she had lived for more than a decade.

 

Everything Will Be All Right

In the morning I had come by to help arrange things as she wanted. We put a CD player in a nearby corner, with a selection of her favorite classical music. We opened the window to a cool San Francisco breeze, and propped her up on big pillows. She wanted to go over some documents with the two friends one more time, so I left the anti-nausea and other medications with them and went to get some lunch. 

Around 3:00 I returned, as planned. I asked Joan, another volunteer who is a retired nurse, to go with me because she’d met Hazel and the two had become friends. Hazel wanted to die in the late afternoon. 


This Is Why

When Joan and I walked in, the two friends were seated at the kitchen table, patiently preparing the medication. “She’s already pretty groggy,” they said, “but she wants to see you!” So we went on down the hallway to Hazel’s bedroom.

She was still propped up – leaning a little but comfortably upright. Music was playing, the breeze was ruffling the curtains and drifting over her bed. Hazel looked up and flashed a beatific smile at Joan and me as we entered the room.

“Oh, wonderful!” she said. “You’re here. Now everything will be all right.”

And this is why I serve, with joy and gratitude, as an EOLCCA volunteer. 

A lifelong newspaper and magazine writer, EOLCCA Board Member Fran Moreland Johns has published fiction, nonfiction, and several books. Her focus on end-of-life issues includes many volunteer years, numerous articles and one book, Dying Unafraid. She holds a BA in Art from Randolph-Macon Woman’s College, and currently blogs at Medium.com and franjohns.net. Her short story collection, Marshallville Stories, was released in April.

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