Kate Staples is a retired dharma assistant in Milwaukie, Oregon.
I met Alan when I was 14. We were together on and off in our lifetimes. We had been separated for two years when I got a call from him one day in May 2012. He was walking in the woods, as he often did, and he started falling. He called me. I picked up. “I’m in trouble,” he said.
He was a Vietnam veteran, one of the troops on the ground, camping in the jungle for days on end. We went to the VA (Veterans Administration) clinic and spoke to his doctors. He was diagnosed with ALS, which the VA classifies as a “presumptive disease”: any disease that is presumed to be related to a veteran’s service. His doctors kept telling us he had 3 to 5 years of life left. I didn’t think so. Every day was a new day in which he couldn’t function.
Wishing to Use the Oregon Law
He knew as soon as he got his diagnosis that he wanted to use the Oregon Death with Dignity Act. I absolutely supported him. I’ve known him all his life, and in spite of our ups and downs, we probably knew each other better than anyone else. I knew enough about the law, and we both understood that even if he requested and received the medication, he didn’t have to use it.
The last stage of his life was so difficult, for him and for all of us. You can’t think. Your brain is so full of the process. He had medical appointments four times a week which required transportation. In November 2012, he transferred to a nursing home, where he lived for five months until he got so weak that we moved him home and enlisted the help of hospice.
Being with someone who is critically ill is a journey. It doesn’t leave much room for anyone involved for anything else. I was so fortunate to have my oldest son, Josh, and his wife offer to take care of Alan. To see my son assume that responsibility was very moving.
Autonomy was so important for Alan, and the hospice workers respected that. When Alan could no longer take care of his own laundry, one of his hospice caregivers would fold his clothes and ask him where he wanted to put it. She knew exactly where they went, but she wanted to give him the choice, because he had so few choices left.
My husband on the surface was a pretty tough guy. He was not in love with the human race. But one of the most wonderful things that happened in his last year of life was that his heart just softened. We received so much kindness—from family members, from hospice care workers, from his fellow veterans at the VA—that we saw a profound change in his behavior.
Alan and I grew closer again as well. While he was still in the nursing home, he said, “Sweetheart, would you mind if we got married again?”
I said, “Of course we can be married again.”
My Buddhist teacher performed ceremony. When Robert asked, “ ‘til death do you part,” Alan responded with a twinkle in his eye. “This time I mean it,” he said. We knew we would be together for the rest of his days.
As the end drew near, we began to plan a gathering to commemorate his life. Believe me, this is not a party you want to plan. But it was a time when Alan stayed true to his old self while also showing his newly discovered softer side. He wanted harp music. That shocked the heck out of me. Tough-guy Alan wanted a harpist to play for his end-of-life celebration? But we made it happen.
I let him know that when he made the decision about when to take the medication, he needed to give me 3 days’ notice so I could prepare myself emotionally. But one day when I was at work, I got a call from Josh. He said, “Alan wants to speak with you now.” Josh held the phone for him, and though he had mostly lost the ability to speak, I could make out his words: “Now. Now. Now.”
I left work and went to him immediately. I asked him, are you telling me this is my three days? He let me know that it was. I said, OK, I’m on it. I got ready to take care of everything that needed to be done, both before and after his passing.
On May 4, 2013, the day of his death, his family and I took him outside. He was sitting against a tree; I was sitting on the ground next to him because he couldn’t hold himself up. People came to him. They read him poetry, they held his hand. I told him how much I loved him. It was beautiful.
Earlier in the day, Alan told Josh he wanted cigarettes. He had one final cigarette before he died. After he passed, the harpist took the pack of cigarettes, picked one up and lit it, and passed the pack around. As odd as it seems to all of us who had quit, we finished the pack for him. It just made sense. It was something he did all his life; it was something he wanted to do until the day he died. It was simply a recognition of the man he was.
Buddhism and Death as Part of Life
I am not a person who displays deep grief. I also am very, very fortunate to be deeply embedded in a Buddhist community, which has provided me with enormous support. Two days after Alan’s death, two members of my community came over to bring me some food. They said, if you don’t want to go out, that’s fine, but we have a ticket to see the Dalai Lama, we’d be honored if you would join us. To be given such a gift at this time and to get to listen to the humor and wisdom of the Dalai Lama was a precious gift at such a vulnerable time.
Buddhist philosophy has helped me to manage my grief. I have no anger, regret, or sorrow from things not being as they should be. This was just a part of life.
The word that comes to mind when I think of death with dignity is personal integrity.
Death with Dignity is about respecting a person’s ultimate authority over their own path. It’s a demonstration of love, a way to honor someone is to support them in their death.
We all have agency over our own lives. How we choose to lead them, the decisions we make, is a place that no one else can go for you. It’s your own path. I can’t imagine doing anything less than giving Alan that respect. I believe that Death with Dignity is a human right.
There is nothing more important to me than letting people know that you don’t have to live your life shaped by your own fear. Alan got to live his death the way he wanted to. I hope that I will be able to live my death the way I live my life. I want to be aware, I want to be conscious, I want to be kind, I want to behave in a way that benefits all living things.
I can’t imagine anything that we have to face more clearly in our lives than our own death. To be there with a man I’ve loved all my life is the way it should be for all of us.