In Love

1. Alzheimer's diagnosis leads to a difficult decision

"Please write about this," my husband said.

A life-altering diagnosis. When Brian Ameche was diagnosed with early-onset Alzheimer's at 66, he and his wife Amy Bloom faced a heart-wrenching decision. Within a week of the diagnosis, Brian decided that the "long goodbye" of Alzheimer's was not for him. He chose to end his life on his own terms, before the disease could strip away his identity and autonomy.

The search for a solution. Amy began researching options for assisted suicide, eventually discovering Dignitas, a Swiss organization that provides accompanied suicide for those who meet their criteria. This led them on a complex journey of paperwork, medical evaluations, and emotional preparation.

Criteria for Dignitas:

• Sound mind
• Medical records supporting the decision
• Ability to travel to Zurich
• Financial means (around $10,000)

2. Navigating the complexities of assisted suicide

"It's a crime, Jack."

Legal and ethical hurdles. The process of arranging an assisted suicide is fraught with legal, ethical, and logistical challenges. In the United States, even in right-to-die states, the criteria are strict and often exclude those with degenerative diseases like Alzheimer's.

The Dignitas process. Applying to Dignitas involved extensive paperwork, medical evaluations, and interviews to ensure Brian's decision was sound and voluntary. The couple had to navigate complex legal and ethical landscapes, always aware of the potential consequences if they were to assist in Brian's death outside of the Dignitas framework.

Key steps in the Dignitas process:

• Application and biographical statement
• Medical records and evaluations
• Multiple interviews to assess discernment
• Travel arrangements to Zurich
• Final evaluations and accompanied suicide

3. The impact of Alzheimer's on relationships and identity

I see that falling asleep, cocooned and childlike, while my husband, a superior driver, takes us home has now been, in the words of Great Wayne, left behind in another country.

Shifting dynamics. Alzheimer's profoundly affects relationships, altering the balance of power and responsibility within a partnership. Amy found herself taking on more responsibilities, from driving to managing Brian's healthcare, as his cognitive abilities declined.

Loss of self. The disease gradually erodes the person's identity, changing their behaviors, interests, and abilities. Brian, once a successful architect and avid reader, found himself struggling with tasks he once excelled at. This loss of self is one of the most devastating aspects of Alzheimer's, both for the person affected and their loved ones.

Changes observed in Brian:

• Difficulty with memory and navigation
• Loss of interest in former hobbies
• Struggles with professional tasks
• Altered social interactions

4. Coping with grief and anticipatory loss

The waves of grief—which I had always thought of as representing a certain ebb and flow of feeling—turn out to be much more like actual waves of the Atlantic Ocean. Thick, salty, consuming, and cunning, picking you up and throwing you down somewhere else, and you are not the better for it.

Anticipatory grief. Amy experiences intense grief long before Brian's actual death, mourning the gradual loss of her husband as she knew him. This anticipatory grief is complex, involving sadness, anger, and guilt.

Emotional rollercoaster. The process of planning Brian's death while still living with and loving him creates a surreal and emotionally turbulent experience. Amy finds herself alternating between moments of normalcy, deep sorrow, and practical planning for a future without Brian.

Coping mechanisms:

• Therapy sessions with "Great Wayne"
• Focusing on practical tasks and planning
• Cherishing moments of connection and normalcy
• Writing and reflecting on their experiences

5. The challenges of the healthcare system and end-of-life care

I don't doubt that I used a soothing, neutral, "therapeutic" voice, as therapy is usually performed on TV. I'd become wary and worried about his mood swings, about the surprising responses and misunderstood signals.

Inadequate support. The healthcare system often falls short in providing comprehensive support for those dealing with degenerative diseases like Alzheimer's. Amy and Brian encounter dismissive doctors, lack of clear information, and a system ill-equipped to handle end-of-life decisions.

The right-to-die debate. Their experience highlights the ongoing debate about end-of-life care and the right to die. The limited options available in the U.S. force them to seek help abroad, raising questions about autonomy, dignity, and quality of life in terminal illness.

Challenges faced:

• Dismissive or unhelpful healthcare providers
• Lack of clear information about prognosis and options
• Limited legal options for assisted suicide in the U.S.
• Emotional toll of navigating a complex system

6. Family dynamics and difficult conversations

"It's not mine to tell," she says. "It's your business. You tell them when you're ready."

Sharing the decision. Telling family members about Brian's diagnosis and decision to end his life is a delicate and emotionally charged process. Each family member reacts differently, with some offering support and others expressing discomfort or disagreement.

Balancing needs. Amy finds herself in the challenging position of supporting Brian's wishes while also managing family expectations and emotions. This involves careful communication, setting boundaries, and making difficult decisions about how and when to share information.

Key conversations:

• Telling Brian's mother, Yvonne, about the Dignitas plan
• Informing siblings and arranging final visits
• Discussing how to tell the grandchildren
• Planning for after Brian's death

7. The journey to Dignitas and final moments

IloveyouIloveyouIloveyou, I say. I love you so much. I love you, too, he says, and he drinks the sodium pentobarbital. I kiss him, all over his handsome, weary face, and he lets me.

The final journey. Amy and Brian travel to Zurich, attempting to balance normalcy with the weight of their purpose. They visit tourist sites and enjoy meals together, all while preparing for Brian's final day.

At Dignitas. The actual process at Dignitas is described with raw emotion and careful detail. Brian takes his time, sharing stories and savoring his last moments. Amy struggles with the finality of the situation, experiencing a mix of love, grief, and relief.

The Dignitas process:

1. Arrival and paperwork
2. Anti-emetic medication
3. Final opportunity to change mind
4. Drinking sodium pentobarbital
5. Peaceful passing

8. Reflections on love, life, and mortality

I married him—despite all the very good reasons that no one should ever partner up for a third time—because early on, he reminded me of the best father figure of my life, my ninth-grade English teacher.

The power of love. Throughout the narrative, Amy reflects on her deep love for Brian, their life together, and the complexities of their relationship. Their journey highlights the strength of their bond and the profound impact one person can have on another's life.

Confronting mortality. The experience forces both Amy and Brian to confront mortality in a direct and intimate way. It raises questions about the nature of a good life, a good death, and how we choose to face our inevitable end.

Key reflections:

• The value of autonomy and dignity in life and death
• The impact of love and partnership on our life choices
• The complexities of grief and loss
• The importance of living fully in the face of mortality

Last updated: October 19, 2024