Alan Alberts’ last meal was two scoops of vanilla ice cream. He had already cut down his intake of food because he wanted his imminent death from hunger and thirst to go as smoothly as possible.
While the Bellingham retiree had managed to become cancer-free after being diagnosed with cancer of the larynx in late 2011, his Alzheimer’s disease continued to progress.
Alberts had seen his mother die of Alzheimer’s. That, and a visit to a care facility where he saw patients in the lifeless late stages of dementia, convinced him that he wanted to end his life on his own terms while he still had the mental capacity to do so.
So, after careful planning, research and discussion with Phyllis Shacter, his wife of 26 years, he set a date to voluntarily stop eating and drinking. He ate the ice cream on April 9, 2013, and died at home, under the watchful attention of his wife, two caregivers, and their family doctor, nine and a half days later.
“My husband was able to have a good death, a peaceful death,” Shacter said. “I can’t imagine anyone who doesn’t want to have a good death.”
Before he died, Alberts asked his wife to spread the word about VSED (voluntary stopping eating and drinking) as one option available for terminally ill people. Since then, she has given public talks, recorded a TEDx Bellingham talk about her experience, and started a website, phyllisshacter.com.
On Saturday, Sept. 26, she and three other speakers will discuss “Alzheimer’s: Perspectives, Realities, Choices” during a free presentation at Bellingham Unitarian Fellowship. A question-and-answer session will follow.
“I call it a compassionately bold presentation,” Shacter said.
Documents provide end-of-life guidance
There are several documents people should complete if they want their end-of-life wishes respected. Those include a health care directive (living will), a durable power of attorney for health care, and and physician orders for life-sustaining treatment.
In this state, Compassion & Choices of Washington, an organization that works on end-of-life issues, has developed an Alzheimer’s and dementia mental health advance directive. The document might not be legal elsewhere, but the process of discussing the issues and completing the form can still help families clarify their end-of-life values.
“It’s about what’s important to you,” said John Eric Rolfstad, executive director of Compassion & Choices. “You’re giving a gift to your family or your next of kin; you’re helping them know that they’re honoring your wishes.”
Shacter said her husband’s decision to forgo food and water wasn’t connected to such documents. The decision to do so is recognized by courts, as long as the person is mentally competent when he or she chooses that option.
Just to be safe, Shacter and her husband signed short documents freeing their caregivers and doctor from any legal risks for attending to Alberts’ final days. That proved helpful because on the third day of Alberts’ fast, a state social worker came by in response to someone concerned about his decision to end his life. After the social worker assessed Alberts and reviewed the documents, nothing came of the complaint.
Shacter said it was difficult watching her husband weaken and die, but she understood why he chose to end his life while he was still able to choose the manner and timing.
“I was glad he was getting his wish,” she said.
Her husband’s wishes also included attending his own funeral while he was still around to enjoy it. So six months before he died, when Alberts could still converse, they held a celebration of his life with friends.
For his final days, they moved a hospital bed into their house, hired two caregivers to provide round-the-clock attention, and stocked adult diapers, a commode and other items to make her husband comfortable and to help the caregivers with their work.
While he didn’t show signs of hunger, Alberts sometimes asked for water. Shacter would remind him of his decision and that giving him water would prolong the dying process, then asked if he still wanted water. Each time he agreed to instead have his mouth swabbed or sprayed with mist to quench his thirst, she said.
Their doctor paid several visits to check his condition and adjust his medications to keep him comfortable yet conscious for as long as possible. While he still could, Alberts looked at magazines, listened to music, and watched “Seinfeld” reruns.
They gave Alberts massages to comfort him, and Shacter often lay next to him on the hospital bed. The day before he died, he mouthed “I love you” to her.
Shacter said the experience complied with her husband’s wishes, and gave her a gift for the rest of her own days.
“I’m enjoying my life more because I’m not afraid of dying,” she said.
Free Alzheimer’s presentation
What: “Alzheimer’s: Perspectives, Realities, Choices,” with speakers and Q&A session, sponsored by Compassion & Choices of Washington.
Speakers and topics: Phyllis Shacter of Bellingham, on the voluntary choice to stop eating and drinking. Barbara Green of Seattle, on advance directive paperwork for people with Alzheimer’s or other dementia. Josselyn Winslow of Bellingham, on challenges families face when a member has advanced dementia. Tresa Mariotto, executive director of Woodway Assisted Living in Bellingham, on dementia care.
When: 3 to 5 p.m. Saturday, Sept. 26
Where: Bellingham Unitarian Fellowship, 1207 Ellsworth St.
Compassion & Choices of Washington: compassionwa.org, 206-256-1636
Phyllis Shacter’s story, with TEDx talk, other resources: phyllisshacter.com
Whatcom Alliance for Health Advancement: whatcomalliance.org/end-of-life-care, 360-788-6594