Conversations

      Many people are said to accept their own deaths or that of another as the final stage of Elisabeth Kubler-Ross’s grief process, whether they know about her description or not. Unless it is sudden, dying is a process we all will experience. Some of us (for varying reasons) will go beyond acceptance and welcomed dying with enormous curiosity and openness.

      How is this acceptance, even welcoming, possible? What must you go through to reach a point where you can accept your own death or that of someone you care for? Or does one … ever?

Art, whether visual, verbal, written or auditory, is a key means of expression for each of us. Please use this category to share with us any artistic expressions you have created that reflects your passions and feelings as you or someone you care about deals with living in light of dying.

      Life is about the choices we make—and handling the consequences of those choices. Very likely, the content we feel about life can be traced to our satisfaction with the choices we have made in life.

      So too is our reaction to being confronted with a life threatening illness, how do we react? Do we flee, fight or accept the diagnosis?

      What conscious decisions about how you live (and die) can be made through the course of an illness: Can you “decide” to keep a sense of humor, celebrate the day, express the feelings of the moment, and so on. What are “successful” choices? What are not? What choices do you face and what consequences for yourself and others do you see flowing from the choices you might make?

      Can one “die with dignity” and what would that look like? What choices does anyone have about the manner and timing of their death? Who makes them? How do we support the one who is dying?

      What do you do when you disagree with the choices the dying make; or the choices your survivors are making or want to make?

      Beyond the caregiving, we express gratitudes in thousands of ways: a special glance or touch, a favorite phrase or endearment, a gesture that says how much you care about the other, and words, always words. Often one must truly know the person who is facing death in order to recognize an expression of gratitude, otherwise it might be missed.

      For what are you grateful in your life or the life of someone who is dying? How do you show it? Is your gratitude understood and accepted? To what extent do you accept the gratitude of the living and the dying? Is it possible to be grateful for death? And for whom? You’re own or another?

      Whatever your sense of humor, it is likely for you, “God’s answer to misery.” Because of this, throughout history we have used humor to ease life’s pains, even when facing death. Under the extreme threat of dying, we often call it “gallows humor,” yet often it is under-appreciated for the benefit it brings both the dying and the living.

      Does humor play any role in your experience with dying? If so, what? How do others react to the humor? How would you like them to react?

      Some people experience joy in different phases of the dying process. We find it in the exchange of love among family and friends. Some may find it in spirituality and religion, others in a life well and fully lived.

      Under what circumstances have you or others experienced that joy? Or have you? Can you create it? Share your stories, writings, poetry and art in conversations with meaning for you.

      Almost all of us have regrets in our lives the dying process tends to bring them to the surface—or bury them. Are they, as Sinatra sang, “too few to mention?” For most of us, they seem to be in the category of “Things Not Done” or missed opportunities. For others, they have to do with relationships damaged, broken or lost; words spoken or not spoken between family and friends.

      Even the great Leonardo da Vinci supposedly said on his deathbed that he hoped God would forgive him for not devoting his life to art.

      Are regrets worth expressing toward the end of life; worthy of making amends; or best left forgotten? What are yours? How have you dealt with them? What suggestions would you offer others? What questions do you have to which others might contribute answers?

      When we are faced with a terminal illness, frustrations of many kinds inevitably set in. These may be frustrations with the effects of the disease, life in general, doctors, hospitals and hospices, therapists, treatments, friends and family. And these frustrations are certainly not limited to the dying. The family and friends of someone who is dying sees the life and death struggle going on and often feel powerless to do anything, leading to more frustrations.

      How have you or someone you know dealt with these myriad frustrations? Are you able to take them in stride? If so, how? Do they trigger negative responses like anger, rage, and helplessness? How do you get past these frustrations, or do they build up inside?

      Next to family, our friends, co-workers and acquaintances are our most important relationships. Someone once said if people had more friends, we wouldn’t need so many psychotherapists. And, like with family, these relationships are subject to the same stresses have their ups and downs. We want to provide support for someone facing a terminal illness. But what kind of support do we offer, when, and how?

      If you are dying, what support, if any, do you want or need from your friends? If you are a friend, how do you give support to someone who is dying; how do you know what kind of support is needed? What gets in the way of providing or receiving support? What happens to relationships among co-workers? Beyond cards, what does one do or say?

      Everyone makes mistakes and misjudgments during their life, particularly with friends and family. When facing death, many strive to resolve those issues by re-establishing communications or making amends. Others do not. Sometimes resolution can be achieved, sometimes not. Perhaps what is important is that an effort is made from a place of love and forgiveness to settle an ancient disagreement or misperception.

      Is it “worth it” to clean up these transgressions? What messes have you created that you would like to clean up? What messes do you wish someone who is in the end stages of life would clean up? What perspective would you give someone who wants to clean up something from the past? Or are they better left buried?

      Perhaps the most difficult thing the dying and the survivors must do is to say goodbye. The sense of loss on both sides is enormous. And it must be done.

      In recent years the idea of a “living funeral” has been spreading, even popularized in the movie “The Weatherman.” It may be a party or a ceremony in which the person dying is celebrated before they die. People invited may be all kinds of friends and relatives, or it may be more intimate. Sometimes both are planned.

      More often, however, goodbyes are private affairs, one-on-one or in small intimate settings.

      How do you say goodbye to someone facing death? How do they say goodbye to those they leave behind? Can rituals be found or created that will soften the blow of loss on both sides? What questions about saying good-bye come up in your mind? What answers have you found?

     Spiritual beliefs are a powerful way to come to terms with death and dying. Many believe in reincarnation or a sense that the unique soul becomes embodied to experience, participate in, and learn from the physical realm. Some see us as spiritual beings on a human journey.

      What, if any, spiritual beliefs assist you or a loved one in the dying process? Do spiritual beliefs help someone die with dignity? Do you have rituals of your own or from some other source to help with dying, separation and loss? How do they help? Will you share them?

      I think it was Norman Mailer who once said that humanity is merely a tribe of highly evolved chimpanzees. This too is a belief.

      With this belief, how does one view the mystery of death? Or is it even a mystery? We exist and then we do not. Is it that simple?

      Quite often someone dying feels guilty about leaving, especially if it is relatively early in life or if they see themselves as a burden on others. It certainly was a struggle for my wife to allow herself to become dependent on others for her basic needs.       And, there is often guilt felt by those of us who are left behind. I still feel that it should have been me to leave early. Ilene was far more worthy of staying around than me.       Has guilt played any role in your dying process or that of someone you know? Do you feel it? Is someone expecting you to feel guilty for leaving or for staying behind? How have you dealt with those feelings?

      After the shock passes, the next stage usually is denial in which the person diagnosed or another tries to avoid the inevitable. It can range from ignoring the news completely to rejecting it. In Ilene’s case, she seemed to simultaneously accept and reject the diagnosis of ALS. The diagnosis confirmed that symptoms she had felt for more than two years were real, but denied that it was ALS. At that first meeting with the doctor she said she was going to “prove him wrong.” Over the next few months she went in and out of accepting and rejecting the diagnosis. For my part, even in the face of worsening symptoms, I couldn’t believe this was happening to us. I tried to keep everything “normal”. How was denial expressed for you or a loved one? What did it take to get past it? Is someone stuck in the denial?

      If you do “something”, you can prevent the inevitable. It is a fruitless attempt to find hope that the horrible news is reversible. The bargaining can take many forms such as alternative treatments, changes in lifestyle or behavior, or prayer. In our case, Ilene searched medical literature for alternative causes for the symptoms, such as Lymes Disease, or treatments ranging from biofeedback to Chinese herbal medicines. Our search was for “hope.” How do/did you see bargaining manifest itself in your situation? How did you move through it or are you still bargaining? Can you find hope without bargaining, and if so, hope for what?

      At this point, one is trying out realistic strategies for dealing with the dying process without being swallowed by it. The person may turn to long abandoned pursuits create new interests, support groups as a way of reclaiming control over their lives. Ilene returned to painting, writing poetry, and participating in heartfelt interviews that led to the creation of the Conscious Living, Conscious Leaving website, she also created specific rituals she wanted to carried out when the time came. I helped with that website, the rituals, and wrote a book about our experience with the disease. What strategies have you developed to deal with the dying process? How did you come up with them? Did you have any help? Are you searching for solutions? What are you able to control and what can you not control. How do you decide what you will do? Is it working?

   Have you ever heard a song or inhaled a fragrance that brought back a wistful memory? Have you ever been someplace or with someone that you later yearn for long after the event? Yearning for the past, for permanence, for the future is a persistent human behavior—and part of our pain and suffering.

    To simply be… It isn’t something we often accept as meaningful.

    Sometimes simply slowing down and being in the moment will change a perspective and bring relief from the chatter if inner mental conversations. Can you feel your thoughts race to the coulda, woulda, shoulda’s of the past or the what if’s, how cans, I gotta’s of the future?

    Can you remember a time when you were longing for someone or something only to discover that what you wanted was already present in your life and you didn’t recognize it?

    Do you ever find yourself yearning for something or someone in the past or imagined future and miss the value of what you have in the present moment?

    What, if any, value is there in practicing this discipline of being with the present moment? Do you try this when sadness builds and you feel your mind taking you places you need not go?

    On the other hand, have you had experiences of being completely “in the moment,” in which past and future concerns melt away and you feel a oneness with the present?

    We’d love to hear about your experiences.

      Many people dying from terminal illnesses choose to search for gifts in their conditions. This goes beyond making lemonade instead of bitterness. It involves searching for any and all positive outcomes that flow from facing death with dignity. We look back on our lives, or the life of the one dying, and find treasures that have meaning for the person’s life. It helps us cope with the loss to come.

      Do you or someone you know look for the gifts? Does it help? How? Would you like to know how a person could make that choice? As a caregiver or one being cared for, have you been the beneficiary of such a gift? Have you been the gift giver and, if so, how did you present your gift.

      Whether you are dying or witnessing someone die, there are lessons that may be learned and shared. We can let go with grace and awareness that there were lessons the soul chose which were beyond the mind’s capacity for understanding. We who are caregivers, friends and family can see another pass from this life and learn lessons from the manner in which they pass.

      What lessons, if any, are you learning? Are they lessons to ease one’s passing, give solace to others, or something else entirely? Are the lessons bitter or joyous? What makes the difference?

    This section is devoted to conversations following someone’s death. They may be someone who has been posting on the website, or not. The conversations may be about what is remembered or wished for from the person who has passed from our sight. It is a place to express dealing with the loss from someone dying … and moving beyond grief, and more.

    Hopefully, it is also a place for conversations that celebrate the one who is no longer here with us. We expect this section will contain thoughts from the various groups that form on the site as well.

    In part, we hope that these pages provide comfort to the survivors, for we believe that is one thing most of the dying wish to leave behind. We invite you to describe your experiences and share your advice about moving on with life, how you cope with someone’s death.

    Humanity has created ceremonies around dying that go far back into prehistory. Burial and cremation ceremonies have probably been a part of our history from the time of self-awareness onward. Their intent for the survivors is trifold: remembrance, grief, and the beginning of closure.

    What ceremonies do you expect to have following your death or the death of someone close to you? How do you anticipate that will support those left behind? If you are the one dying, what, if any, ceremony do you want to honor your passing?