Co-founder of VSED Resources Northwest and Dementia Support Northwest
In May of 2019, two friends whose husbands had recently died, a death doula who had worked with our family, and I gathered to talk about VSED. We decided that it was important to get word out that there was a compassionate end-of-life option for people who could not qualify for, or did not choose to use, Washington State’s Death with Dignity Law. That was the beginning of the VSED Task Force, which later became VSED Resource Northwest!
My support for VSED comes from two personal stories–the first about my mother and the second about my husband.
I was an only child. I married a career military officer. When he was overseas and I was at home with the children I moved to be close to my mom. She and I became more like friends than mother and daughter. Mother had been “world’s best secretary” but in the 1970s, she started having memory problems, and over time it became clear that she could not live alone. So, when we moved to Bellingham in 1979, she came with us.
Frank and I and our four college-aged sons did our best to care for my mother, but in the early 1980s, her care needs overwhelmed us. I visited several nursing homes, remembering back to a day when she had come home from seeing a friend in a nursing home and saying, emphatically, “I never want to live like that.” After I determined which nursing home seemed best for Mother, she and I visited the doctor who was the medical director of that nursing facility. As we sat in his office, I told him the story of Mother’s visit with her friend and asked about the nursing home’s policy. He assured us that they would note in her chart that she did not want any life-extending care. And, while Mother didn’t have formal paperwork to allow me to direct her care, since I visited her and was involved, the nursing home administrator called on me to make decisions for her.
Sometime later when I was visiting my mother, I just happened to see her chart. I was upset to discover that the chart had been changed and now indicated that she should receive aggressive treatment. After a discussion with the nursing home administrator, her chart was changed back to reflect her choices.
Mother’s dementia was progressing; she started falling. One day I stood and watched as she continued to try to walk, determinedly putting one foot in front of the other. I felt I had to say to her, “You don’t have to fight so hard.”
Within a couple of weeks, the nursing home called to say that she was refusing to eat. “Should we force feed her?” they asked.
I said, “No. If she won’t open her mouth to eat, that is her choice.”
She died about two weeks later, and although an autopsy confirmed that she did have Alzheimer’s disease, her death certificate said, “Heart failure.”
During the time my mother was struggling with Alzheimer’s, we met other people who also had family members with similar problems. A number of us decided to organize, and in 1983 Frank incorporated our new organization as the Alzheimer Society of Washington.
Even after Mother died, Frank and I continued to be involved with dementia-related issues. I worked with the Alzheimer Society’s support groups and on educational issues, while Frank became an advocate in Olympia working to change the law so that a hierarchy of family members could legally speak for someone who is no longer able to speak for themselves. Frank also went to the Washington State Bureau of Statistics and asked them to include Alzheimer’s disease as a cause of death.
Fast forward to 2015: While Frank was still the same thoughtful person he had always been, he started having problems–like getting lost when he was driving. His doctor diagnosed him with vascular dementia. Frank examined his options. He was adamant that he did not want to live in a care facility. Knowing he had a progressive dementia, he wanted to stay in charge of his life–and death.
We heard about VSED, the technique of a person’s voluntarily stopping eating and drinking to control when death would occur. We went to an attorney to get advice about legal issues, and we also visited our doctor to ask if he would support Frank’s choice of VSED. Our doctor said, “I’ll do anything that is legal.”
While Frank continued to have some problems, overall he was doing well. But, in the spring of 2017, after a series of tests, his doctor simply said, “You have a crummy brain.”
Frank knew it was time to act. We got a copy of Phyllis Shacter’s book Choosing to Die, and, using it as a handbook, met with our adult children and potential caregivers to make specific plans. When the doctor asked Frank why he wanted to choose VSED, Frank answered, “I want to control my death.” The doctor agreed to support Frank and to work with the caregivers, and Frank set the date. He would begin VSED in early May.
Our five adult children-and some of the grandkids-came to say good-bye. On a Saturday morning, Frank had his last drink, and we settled into the waiting game. Frank played his part as if he were following a script. He continued his regular routine, but without eating or drinking. As he grew weaker, he retired to a hospital bed. On Monday, our doctor came for a visit and said it was time for Hospice to get involved. Frank drifted into a coma. The caregivers watched carefully and kept him comfortable. On Saturday–a week after he had started his fast-the priest came to give Frank Last Rites, and on Sunday, he died. As a footnote, his death certificate noted the cause of death as “Vascular dementia.”
The choices made by my family members help to explain why some people may choose to stop eating and drinking. I support VSED Resources Northwest’s mission and encourage people to learn more about this end-of-life choice.