STORIES
John Baccus
Maia Calloway
John Baccus
My husband, John Baccus, was diagnosed with Alzheimers on January 20, 2020. John accepted his fate with grace and his usual joy for life. However, as we had discussed many times in our forty-one years of a magical marriage, neither of us wanted to live life in a vegetative state. John was adamant that if his brain was diminished, he wante
My husband, John Baccus, was diagnosed with Alzheimers on January 20, 2020. John accepted his fate with grace and his usual joy for life. However, as we had discussed many times in our forty-one years of a magical marriage, neither of us wanted to live life in a vegetative state. John was adamant that if his brain was diminished, he wanted to find a way to end his life on his own terms.
It took me two years to find a way to help my husband die. Once I discovered Dignitas in Switzerland, John was relieved to know there was a way for him to die peacefully, painlessly and with dignity.
There are many steps one has to accomplish to receive approval for an assisted suicide at Dignitas. A Request Letter is one of the first steps. Below is John’s letter including my thoughts in italics.
It certainly is a heart wrenching experience for both the afflicted and loved ones. But, I do believe John’s chosen death was a gift. He died in my arms on July 26, 2023.
January 30, 2023
Dear Sir
I am writing to you today to formally request Dignitas to prepare an accompanied suicide for me. I am currently suffering from Alzheimers. I was diagnosed in January 2020 and the illness is progressing. I am still functional, but I do not want to live through the end stages of this disease which would incapacitate me both physically and mentally. I believe the process of living requires an awareness that Alzheimers will eventually take away from me. In light of that, planning and executing my death prior to those devastating aspects of my disease allows me to die with dignity, but more importantly not live with the inability to be the master of my own life. This decision is not lightly taken.
How is it that John could write so eloquently? I do believe John was very clear about his decision. This should help me accept it.
I am physically in good health except for Alzheimer’s and its associated symptoms. I am suffering from Myoclonus which causes me to shake internally and externally constantly. I am losing energy quickly in addition to the loss of my short term memory. On occasion I have lapses where my reality is not grounded in fact.
My short term memory loss is increasing at a relatively rapid rate. I don’t know the day of the week or the date. I can’t remember to go to places where I am supposed to be. I am told I ask the same questions repeatedly and tell the same stories over and over.
I had to help John remember how he was declining - what the specifics were.
I spend many of my days sitting in a chair watching TV or sleeping which is a huge change from what was normal. I used to work in the garden each day or work on building my train in the garage, ride a bike or go for a hike. I no longer have the energy to do any of those activities which I loved.
I dress myself, shower and overall can take care of my bodily needs. However, I no longer can pay our bills, remember to fix the needed repairs in our tenants’ homes, or take care of our overall financial requirements.
My diagnosis and the progression of my disease have all brought me to the conclusion that my life will be considerably less viable in a relatively short period of time. I believe in life. I believe in the dignity of life and I truly believe life is not something to be wasted.
It hurt to watch John compose this. I had to type it for him. It was one of the steps in the process that had to be completed and approved. Surreal was a word I used over and over to myself.
I am happy to answer any questions you may have.
Respectfully, John Baccus
S.B.
Maia Calloway
John Baccus
At the age of 24, S. sustained a spinal cord injury in a car accident that left her a wheelchair user. She became active in promoting the rights of people with disabilities and served on the boards of several major organizations devoted to this issue. For fifteen years she was also the Executive Director of a non-profit that managed the S
At the age of 24, S. sustained a spinal cord injury in a car accident that left her a wheelchair user. She became active in promoting the rights of people with disabilities and served on the boards of several major organizations devoted to this issue. For fifteen years she was also the Executive Director of a non-profit that managed the State of California's Deaf and Disabled Telecommunications Program. In March 2014, she began to experience severe and unrelenting nausea which forced her retirement five months later. After consulting numerous medical professionals and being prescribed many medications over the next two years, none of which helped her for very long, she was finally diagnosed with a rare and incurable, although not terminal, condition. With her nausea worsening, and no hope for relief, S. made the decision to end her life. With no legal option for getting assistance, she purchased a gun, and told her husband and daughter of her decision. She and her husband spent time the next few weeks putting their affairs in order.
On the day of her death, S. left a note for her family and friends thanking them for being a part of the wonderful life she had shared with them. She also explained that she made her decision because she could no longer endure the intense and unremitting nausea. She pinned a Do Not Resuscitate note to her jacket with her name and address and her husband’s contact information, and she put her signed Health Care Directive in her jacket pocket. She then rode her motorized wheelchair to the local police station where she shot herself. The police responded immediately, and she was taken to the county hospital. Even though she had the legal document in her pocket, her husband was called to confirm that she should not be resuscitated. She died while her husband and daughter were on their way to the hospital. At the hospital, her husband endured questioning by a police officer who wanted to learn if he had helped her in any way. Her husband was later presented with a bill for $40,000 for the ambulance and the efforts to resuscitate her. Fortunately, the family had good insurance and only had to pay a $100 deductible.
Maia Calloway
Maia Calloway
Maia Calloway
IN HER OWN WORDS
I am a former filmmaker and production artist who lived and worked in Los Angeles. In 2012 I developed a severe form of progressive MS, which has resulted in a relentless decline, with intractable pain. I have lost much of my ability to see, walk and feel, and I can no longer work in my field. I have relocated to New Mexic
IN HER OWN WORDS
I am a former filmmaker and production artist who lived and worked in Los Angeles. In 2012 I developed a severe form of progressive MS, which has resulted in a relentless decline, with intractable pain. I have lost much of my ability to see, walk and feel, and I can no longer work in my field. I have relocated to New Mexico to be close to family.
As my condition has continued to deteriorate, I have become active in the effort to expand end of life laws to include people like me who are suffering and who seek a compassionate end to their lives, but who are denied access to the existing laws. In New Mexico, I was part of the effort to pass a law that would have allowed access to Medical Aid in Dying for people who suffer from degenerative and irreversible conditions. Unfortunately, the legislature did not pass this bill and, after coming under massive pressure from lobbying groups, instead passed a law based on the outdated Oregon model, The Elizabeth Whitfield End of Life Options Act. This law contains the same restrictions that exist under California’s end of life law.
I realize that there is no hope for me under the current restrictive laws in the US, and I will soon travel to Switzerland to obtain an assisted death. My dying wish is that a more enlightened, compassionate law be passed. People with progressive incurable conditions must be given the right to choose a dignified end to their suffering. I believe that this can happen in California, and I hope that my story will contribute to this effort.
Ricardo Hofer
Maia Calloway
Maia Calloway
Written by our President, Marcia Hofer, and published in the Sacramento Bee on November 22, 2023
My husband, Ricardo, and I were lifelong planners. But when we faced our most difficult challenge, we discovered that under California law Ricardo couldn’t plan how or when to end his life.
Ricardo began experiencing symptoms of dementia in the
Written by our President, Marcia Hofer, and published in the Sacramento Bee on November 22, 2023
My husband, Ricardo, and I were lifelong planners. But when we faced our most difficult challenge, we discovered that under California law Ricardo couldn’t plan how or when to end his life.
Ricardo began experiencing symptoms of dementia in the early 2000s. Having seen family members with dementia suffer catastrophic declines and given the ways his decline was impacting his capacity to do the things he loved most, Ricardo was determined to end his life before dementia robbed him of his dignity and his autonomy.
California’s End of Life Option Act provides legal and peaceful medical aid in dying (MAID) to those who have a terminal diagnosis and are within six months of dying. But people suffering from dementia are barred from accessing MAID: they will lose the capacity to make decisions long before reaching that six-month point.
Ricardo wanted to pursue a legal way to die at home, but because he could not access MAID, we needed to find an alternative.
We considered our options, but none seemed viable. Some options could have even led to severe legal consequences. So Ricardo chose to have an assisted death in Switzerland, the only country in the world that offers this choice to non-citizens. The months before his death were spent saying goodbye to family and friends — a moving experience for all who participated.
Our family traveled to Switzerland, where Ricardo died at the Pegasos clinic on October 1, 2021. After turning a dial that released a lethal medication into an IV in his wrist, he died within moments, surrounded by his closest loved ones and listening to his favorite music. This was the painless and peaceful death he had hoped to have at home.
Nearly 75% of people who utilize MAID are suffering from terminal cancer. For these people, California provides the option of a compassionate death. But for those who suffer from dementia, California’s law offers nothing. This effectively creates an underclass of patients who must either scramble for a solution or accept the inevitable decline that will be their fate.
The good death that Ricardo had is only available to people who have the financial means and physical stamina to travel to Switzerland. Many who would choose this option cannot do so. For these reasons, I and several others formed A Better Exit, with the goal for California to remedy the inequities in current law so that all people with terminal illnesses have access to MAID.
On the morning of his death, Ricardo was interviewed at Pegasos. Here is some of what he said:
“I firmly believe that this is a right that every human has, to determine when and how to leave this life. I’m not committing suicide. I am committing to live my life to its very very end with the same kind of values I’ve tried to exercise throughout my life. I hope that there will come a day when dying will be treated like any other human experience, rather than something that has to be avoided at all costs. It cannot be avoided, because we all are destined to die. The issue is how we die, and with what kind of values.”
Everyone should have the option to die on their own terms and have meaningful goodbyes with friends and family. According to the California Department of Public Health, the number of Californians living with dementia will reach over 2.1 million by 2040. If you are one of them, will you want the right to have the good death that Ricardo had in your own home?
Marcia Hofer, Ph.D. is a retired clinical psychologist and a reluctant activist who became the founding president of A Better Exit after the death of her husband.
An additional Op/Ed written by Marcia Hofer was published in The Mercury News in September 2024.