Fear of Dying

Originally published in Colorado's AIDS Newsletter, Resolute! , June 1995

Do not reproduce without permission of the author

I don't mind dying. I just don't want to be there when it happens!

Woody Allen

The fear most often expressed about having HIV is the process of becoming sick and dying. This is best expressed in the writing of a client anticipating his HIV test being positive, after going untested for three years:

"Probably my greatest fear is of being very, very sick and dying. I've never broken a bone or even had a stitch. I know I don't handle pain well, emotionally or physically. I fear that I'll be alone because I've pushed my past lovers away because of my own addictions and fear of intimacy. I'll be alone and suffering and scared and slowly dying; painfully, and in the most horrid way possible, probably going blind first. I've pictured a very horrible scenario each time, sometimes an early suicide so that I won't have to face all of the confrontations that I have rehearsed in my mind in the middle of the night."

For this article I got together with Richard Baer, RN, MS who is the Coordinator of AIDS Services for Hospice of Metro Denver. Richard is a phenomenal man who when I first heard him present his experiences, got the feedback from a psychologist in the audience, "Your love is palpable. I would want you there if I was dying."

Richard and I agreed that those of us who have witnessed the deaths of many PWA's have the personal experience of being less fearful of dying as a result. It is a natural process with a beautifully profound side. I made the observation that before this epidemic I believed I wanted to go suddenly of a heart attack in my sleep. However, since sharing the experience with a number of PWA's I now believe I want some time to anticipate my death and say goodbye to those close to me. I have come full circle to wanting a conscious death. Unlike Woody Allen, I want to be there! Richard enthusiastically agreed.

PAIN MANAGEMENT

In my last column I quoted Julian Rush, the Coordinator of the Colorado AIDS Project as saying, "We cannot always guarantee a death that is pain free and with dignity." Richard took issue with his from the point of view of good hospice care. Richard's experience has been that in 95% of the cases pain can be controlled and symptoms like diarrhea can be managed. "Its not always blissful and peaceful, but always workable," Richard added. I made the observation that its not physical pain that is the problem, but emotional suffering. And it is fear that causes difficult dying processes. Richard added that the emotional task of hospice care is helping people reframe what is happening from "giving up" to "letting go". Richard went on to say, "If things can be normalized without the fear of dying, and without pain and discomfort; they can concentrate on living."

USING THE TIME LEFT

One of the first clients I was with when he became sick was bedridden for three months before he died. On a visit one day when it was gloomy and raining out, I asked him if he still wanted to be here. "Oh yes!," he replied. "Why?" I pressed. Jim said it was because of the quality time he was spending with friends. I had known him for five years, and was amazed that at his funeral there were over a hundred people there. Besides myself and his family, the rest had all gotten to know Jim since he was HIV+. Prior to that time his damaged self-image had prevented him from pursuing and sustaining friendships. When he first came to see me he was suicidal over depression and isolation. This was before the HIV test was available, and he had no idea he had AIDS. As I often see with PWA's, Jim got less depressed and suicidal the sicker he became. His neurotic concerns about himself dropped away, and he became a warm, open individual with a wry wit and an increasingly outgoing personality.

Richard Baer tells a story of a man I'll call Bill who reconciled a twenty year estrangement with his father in the last days of his life. His father was the good ole boy type who showed up wearing his Knights of Columbus baseball cap, and his elk hunter belt buckle. After staying a few days in a motel, Bill's father moved into Bill's house and became his full-time caretaker for the last three weeks of his life. Richard remarked that it was remarkable to watch the two of them fall in love with each other. They were able to drop their differences and resentments over the past, and bond as father and son. Richard still recalls Bill's father lifting Bill from the bed to the couch for a change in scenery. He also recalls driving away from Bill's house after he died, hearing Elton John's song on the album, The One: "I guess I misjudged love between a father and a son." Bill's father went back to Idaho, and now does hospice volunteer work with PWA's.

HOW WE DIE

I have found a lot of people imagine their death to be one of struggle; possibly suffocating, choking or the sensation of strangling. For this reason they consider self deliverance or assisted suicide as a way to die more peacefully by going to sleep. As I indicated in the last article, suicide can go awry, and does; one study suggested in 50% of the cases. Richard Baer believes that with proper pain and symptom control, as well as emotional and spiritual support there would be few who would choose suicide. I would add, that if people are well informed of the dying process, it would make it seem much less scary.

The medical reasons people die of AIDS varies with their various opportunistic infections, however the following might be considered a typical scenario.

Stan lived longer than any of us thought he would. He wasted away to a wisp of his former self, but he remained mentally sharp and quick with a sense of humor. When he stopped eating and drinking, his nausea ceased and actually he experienced a decline in his level of pain. He frequently sucked on a small sponge at the end of a straw to keep his mouth moist.

One day when I arrived he told me he had already died. He went on to tell of two friends who had died of AIDS before him who had come to get him. He followed, but not far, still reluctant to leave. He waved at the foot of the bed, saying "And they're still waiting for me." It would be quite easy to dismiss this as confusion. However, it is very common for people close to death to experience the presence of loved ones who have gone before them.

We will never know until we get there, but if we can extrapolate from the reports and observations of those who are dying. You can expect to experience a consciousness similar to a dream state. Even though your body may be restless, even though your breathing may become irregular and then long periods between breaths; you are likely to be detached like when you've used gas in the dentist's chair. Your body temperature is likely to go all over the map -- hot to cold, but you are preparing to leave that worn out shell behind. Ram Das likens it to squeezing out of a tight shoe.

You are most likely preoccupied with those on the "other side" who have come to get you and guide you to the next plane. Many people get a glimpse of this other place and in every instance describe it as "peaceful and beautiful". There are the experiences of those who have died and been revived who talk of the bright light, etc. This has been so popularized it has become a New Age cliche. However, these experiences parallel those of the dying, and are strikingly similar despite cultural and historical differences. For Richard Baer and other hospice workers it is very universally accepted that life does not end, but rather people leave their bodies and their existence goes on in another form. What exactly happens after we die -- whether its Heaven or another life, is less relevant than the fact that in some form our consciousness continues. John Lennon characterized it as "getting out of one car and into another." Our existence goes on.

"Death is only a horizon; and a horizon is nothing save the limit of our sight."

Rossiter Worthington Raymond

1840-1918

RECOMMENDED READING

Callanan, Maggie and Kelly, Patricia. Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying. N.Y.: Bantam Books, 1993.

Kubler-Ross, Elisabeth, ed. Death: The Final Stage of Growth. New Jersey: Prentice-Hall, 1975.

Levine, Stephen. Who Dies? An Investigation into Conscious Living and Conscious Dying. NY: Doubleday, 1982.

Moody, Raymond. Life After Life. NY: Bantam Books, 1975.

Osis, Karlis and Haraldsson, Erlendur. At the Hour of Death. NY: Avon Pubs., 1977.

Ring, Kenneth. Heading Toward Omega. NY: William Morrow, 1984.

Last messed with November 15, 2001