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In a previous blog, we discussed end-of-life options for dementia patients. Now, we present a case study of a dementia patient who chose Voluntarily Stopping Eating and Drinking (VSED). Thank you to Julie Miller and her family for sharing their story, so that it might help others, and ease the open discussion of these issues. 

Arnie Miller, 87, an EOLCCA client, had dementia and, after experiencing increasingly pronounced symptoms for a few years, decided he no longer wanted to live that way. On December 28, 2023, he began Voluntarily Stopping Eating and Drinking (VSED) supported by his loved ones ~ wife, daughters, son-in-law, and sister-in-law ~ and died peacefully at home ten days later.

Arnie’s middle daughter, Julie, contacted EOLCCA Client Volunteer Lynne Calkins. Julie shares her family’s experience, the challenges and blessings, and what she wishes they knew in advance.

I’m ready now

Four years ago, Arnie was diagnosed with Mild Cognitive Decline, later developing into Lewy Body Dementia. As his memory loss accelerated, recalls Julie, “He became increasingly anxious.” He began to talk more actively with family and friends to explain “he was ready to go and was choosing VSED to die in a manner and time that felt right for him.”

Julie’s parents actually began discussing VSED years prior to Arnie’s diagnosis, as Julie’s maternal grandmother and paternal aunt lived for years with dementia. “My mom and dad were absolutely certain that living like them, with severe dementia, was not a life worth living. They made a pact to support each other with VSED,” says Julie.

It was in December 2023, when Arnie became bedridden, that he resolutely pronounced, “I’m ready now,” Julie shared.

What was the experience like?

“The first few days he was really hungry,” describes Julie. “Thankfully, the hunger subsided. It was the dehydration that seemed to be the most difficult physical aspect….He really disliked being bedridden, fully dependent on us, without food and water….”

“The most emotionally challenging moment for me, aside from my dad dying, was when he asked for water. My sister, Nan, and I were with him at the time and said, ’Dad, we can give you water, but then you’ll have to start this process all over again and it will take longer.’” Arnie said, “I don’t want to start over,” and decided not to drink water.

On another occasion, when he asked his wife for water, she played a video they had made of Arnie encouraging himself to follow through with the process. In the video, he says, “You can do this. You don’t want to live with dementia, away from home, totally dependent on others.”

Arnie fell into a coma the last three days of his life, a natural stage of VSED. Julie remembers, “I experienced another level of grief, but also felt tremendous relief he wasn’t experiencing discomfort anymore.”

“To endure extreme dehydration seemed impossible to me, although I don’t believe it felt that way for him,” Julie reflects. “He was at peace with dying. He was a spiritual person, had a strong meditation practice, and was ready to go. He joked, ‘At least when I’m dead, I won’t be thirsty anymore.’ He had a sense of humor until the end,” Julie smiles.

The Miller family daughters

What were the challenges?

One of the most “stressful challenges was lack of 24-hour care,” she says. “It may be that your loved one won’t need this in the first few days, but the moment will arrive suddenly when you realize there is an immediate need for around-the-clock care. We didn’t know this and weren’t prepared.”

A professional event planner, Julie explains, “VSED is an event,” one with complex logistics that caregivers are attempting to learn and execute simultaneously, with no training. “We had zero experience with VSED and a real lack of information about the medical and logistical processes. We were also experiencing the stress of managing my dad’s real-time dying process, in close quarters with each other, sleep-deprived and grieving. This all took a tremendous physical and emotional toll.”

Preparing for VSED includes answering questions such as: Do I have a bedside commode? A baby monitor? How do I turn my loved one over to bathe them? How do I change adult briefs? What if my loved one wakes up in the night, forgets, and drinks water? Liquid morphine tastes horrible and they won’t be able to wash it down with food or water. Is there an alternative? Am I physically and emotionally capable of supporting my loved one through VSED, perhaps for the first time? As a caregiver, am I remembering to eat, stay hydrated, and get enough sleep?

Being prepared

Some resources Julie recommends exploring prior to VSED include: The Healing Hand: 5 discussions to have with the dying who are living, Voluntarily Stopping Eating and Drinking: A Compassionate, Widely-Available Option for Hastening Death, and VSED podcasts at Ask a Death Doula. EOLCCA also offers resources for VSED and volunteers experienced with supporting VSED clients.

Julie’s mother wanted only family members and hospice in the house, and Julie wasn’t aware they could have hired a death doula for advice by phone and video. Even though hospice is available by phone 24/7, case workers aren’t always able to return calls immediately. She recommends, “If it’s affordable, families should hire a death doula, preferably with VSED experience.”

Just because someone starts VSED does not mean they immediately qualify for hospice, she explains. “Hospice care wasn’t approved to begin until my dad had already stopped eating and drinking for two days.” Julie’s family did not have professional support to prepare for or begin the process. And, once a patient qualifies for hospice, it may still take a few days for a hospice worker to be available. Death doulas can provide support beginning any time.

“I don’t know how much experience hospice workers generally have with VSED, but ours had little to none,” Julie says.

“Even if you believe death doulas are hippie-dippie nonsense, it doesn’t matter. They know the logistics of dying. They don’t have to provide spiritual or emotional support if you don’t want that. They can simply coordinate the process, which can be overwhelming,” explains Julie.

By day four, “we were emotionally and physically exhausted,” Julie recalls. “My dad said ‘Go home. Take care of yourself.’ He recognized the toll caregiving was taking on us. I felt seen and loved by him in that moment, as I had always felt.”

Arnie and Margo Miller

What were the blessings?

There were many beautiful exchanges,” says Julie. “We shared memories, talked about how much we loved each other, and gave our regrets permission to wash away.”

Friends and family “called to talk and sent emails that we read to him.”

“I felt unconditional love for my dad that I didn’t believe was possible for anyone. I heard others talk about unconditional love when family members passed and thought, ‘Come on. Is that really possible? Can one really feel that?’”

“I did,” she says. “And it was a profound gift.”

Another blessing was Arnie’s deep acceptance of everyone’s love and gratitude, Julie said. “He learned what a positive impact he had on so many people’s lives. He took that in, really felt the truth of that, in a way I think he never had before.”

In a poignant moment with her dad, Arnie says, “I’m very lucky because I’m going to be able to go out on a wave of love, with the people I love around me.”

If you or a family member or loved one would like to talk with one of our client volunteers about VSED or other end-of-life options, please reach out to us at 760-636-8009 or by email at info@endoflifechoicesca.org. 

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Antonia Kao is an interdisciplinary artist, stay at home parent who unschooled her now-15-year-old daughter through age 13, and current End of Life Choices (EOLCCA) Client Volunteer. She’s grateful for a conversation with her younger sister, geriatrician Dr. Helen Kao, that helped her find EOLCCA (with which she began volunteering in September 2022) and the University of Vermont Medical School Death Doula training (which she completed that same winter).