- VSED at Home with Hospice: The experiences of a Husband and Daughter
The story we have to tell about VSED is the story of a family negotiating, respecting and living with each of our individual needs and desires. Polly’s desire to end her life after years of increasing illness led to the negotiation of millions of logistics and even more feelings. This essay looks at the experience from the perspective of her husband and only child (age 29 at the time) during the last two weeks of her life.
Polly had an inherited genetic disease that causes recurrent strokes and other impairments. She was determined not to go through the agonizing death her father experienced, so when her condition worsened, at age 67, she decided to stop eating and drinking, and died at home two weeks later under hospice care.
While writing this piece, one of the most interesting realizations was that we each experienced different moments of importance throughout the two weeks. What was consistent was the warped feeling of time, through weeks that lasted months and moments that were too short. We’ve presented a few of these moments through our individual voices in roughly chronological order.
“Get me that book on how to kill yourself.” This is the way my usually eloquent wife started our final discussions about the end of her life. We had talked about these issues for years through multiple hospitalizations, as the disease progressed, and her capabilities and quality of life diminished. The first time Polly brought it up 6 years prior to her death, I said, “When the time is right, I will help you do this because I love you and I know your feelings and desires, but I don’t think this is the right time.” Over the years she had decided that VSED was the best alternative available to her, and after many discussions I concurred.
After a stroke in 2012, aspects of her mental process deteriorated further, particularly emotional and executive functions, with aphasia and decreasing quality of life. When she raised the issue again, we both felt that if she didn’t do it then, she might soon lose the capability to make and carry out this decision. Even though I knew this was coming, I had feared facing it. Now it was decision time: I had to either help Polly or abandon her. The decision to be [End Page 82] with her and help was easy, but the grief and fear were almost overwhelming.
When I said that we should call Elizabeth, our daughter, so that she could come home, she said, “NO.” I took this as a symptom of the disease and reminded her that Elizabeth has always been a part of the process of coping with this disease and that we withheld nothing from her as we went along. To do so now would be cruel and at odds with the way we had raised her. Besides, we all needed to be together at this time, and I needed Elizabeth for support. I called Elizabeth and asked her to come home at the end of the week.
Over the six years since my mother’s diagnosis, I had visited my parents many times when it was convenient for me—over holidays and long weekends. During the time of her illness my parents had never told me I needed to come home to take care of them or her. That being said, we had established a routine where the first words said on any phone message were “Hi! We’re all fine.” I feared the call even though it had never come. So when it did come, I knew what to do even though I didn’t know what was happening.
My dad asked me to come home that weekend. I got off the phone and collapsed in a crying puddle on my roommate. She said, “Why wait until the weekend. Can you make arrangements to go home tomorrow?” So I did. I did what I needed to do that day, made arrangements to cover my work shifts for an undefined amount...