MUSINGS ON MORTALITY: Being open about death helps everyone
When death is in the house you feel the impermanence of life. When you feel the impermanence of life, you feel truth. When death is in the house, you have a keen sense of the present moment and it feels like wonder. When you are with a person in his dying time, there is little or no pretense. There is gratitude from the dying person and the family members that you are there, willing to bear witness and help out. They think you are there for them, but in reality they are the givers. To be sharing the dying time of anyone is an honor and a privilege.
What they are giving is an opportunity to be reminded of the way things are, the nature of our mortal reality. The more you are reminded, the better prepared you are when your time comes or the time of a loved one.
I have been a hospice patient volunteer for nearly 16 years. I started out in Westchester, N.Y., volunteering for the hospice that cared for my husband, who died in our home. I was so impressed with how they treated our traumatized family and felt such gratitude for their support that I had to give back. I didn't know when I began volunteering that
I would learn so much from the patients and families I served and still serve. I have also gotten some insight into how death is when it is not in the house, but in an institution.
I am sad to report that when death is in an institution, the dying is often a secret or it goes unnoticed. Residents wake-up in their room to find that the bed next to them is now empty. They never knew or were told that their roommate was in his or her dying time. What is partially responsible for this is the Health Insurance Portability and Accountability Act of 1996 (HIPAA). It requires patient permission for anyone to talk about his or her diagnosis. Death-denial is another reason.
I had visited a hospice patient, Karen, in a nursing home, in a room that she shared with someone who was not in hospice care. One afternoon, I arrived and Jane was asleep. I spoke with her roommate who was in her wheelchair in the hallway. She reported that Jane would stay in bed for an entire day, would refuse to feed herself, and was uninterested in doing anything including bingo. She was perplexed by Jane's lack of self-motivation. I realized as she spoke that she did not know that Jane was dying. I also could not tell her because of HIPAA. When I went back into the room, Jane was awake. She was in a state of agitation and fear. I asked, "Are you afraid to die?" I didn't know if she could grasp what I was asking because of her dementia. She looked straight at me and replied, "Yes. Aren't you?" I said, "No." She replied, "I wish I could be like you." She was lucid.
Jane was isolated in her true condition because her very roommate did not know that she was dying. Here was a missed opportunity for Jane to get the support she needed from her roommate and for the roommate to be compassionate and not judgmental. I wanted to tell the roommate that Jane's behaviors are the behaviors of someone who is dying and that this is probably how she will be in her dying time.
Instead I asked, "What do you think happens when you stop eating?" She replied, "You starve." I asked, "What happens when you starve?" She answered, "You die." I replied,
"That's right." This woman, aged 102, then said, "I don't want to think about that."
Deborah Golden Alecson is a death, dying and bereavement educator and speaker who resides in Lenox. She is the author of three books that deal with her personal loss. Learn more at deborahgoldenalecson.com.
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