• Caregiving in accordance with goals and values
• Less over-reactive/‘‘automatic’’ reactions or withdrawal
• Less dependence on other’s emotions
Story: I spent several years traveling back and forth to Seattle from Southern California to be with
John and Kenny, both of whom had AIDS. John died first, and all our loving of him, all our holding
of him, all the support offered to him, the listening, the presence, seemed to do little good; and yet,
one doesn’t look for an outcome.
At the end, when John was actively dying, he could not believe he was actually going to die.
Eventually he developed dementia. John died a hard death. I learned that sometimes all we can do
is just be present. We are powerless to change the tide of suffering, dying, and death. And we, as
caregivers, have to take care of ourselves along the way.
After his partner’s death, Kenny moved to a tiny room in a brownstone in the Bronx. Whenever I
went to New York, I’d go to see him. Sitting by his bed, I would listen to his quiet request that I help
him die. I could understand why Kenny wanted to take his life. It seemed to him that he had little to
live for. He was alone most of the time in a tiny sweltering room in a desolate corner of New York,
with few visitors and little support. He had been abandoned by most of his friends. I knew from
years in this work that withdrawing from one’s patients is not an uncommon experience. I did not
want to do this.
I invited Kenny to move in with me, but he declined, saying he wanted to stay on the East Coast
near his sister. In the end, I had very little to give Kenny except for presence. We meditated
together, and we shared moments of deep peace. Then one evening Kenny said to me, “You
know, it’s October now. In November I’m going to my sister’s farm and put myself on the earth and
die.”
And that is exactly what he did. He chose the time of his death, and he took his own life. He took it
peacefully, close to what he loved the most, the land he had tended since he was a child. I heard
from those who were with him that it took him a long time for him to die, but that he was right there
through all of it. As a good friend and caregiver, I found it challenging to support his decision. And
yet, it was necessary to support his wish and autonomy, and I had to regulate my response to his
situation, including his choice to take his own life, in order to keep on showing up for him.
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