Understanding the Needs of the Dying
Through a most fortuitous series of coincidences, I recently took a course on “Understanding the Needs of the Dying” with Dr. David Kessler, world expert on grief and loss. This newsletter, based on that seminar and Dr. Kessler’s book The Needs of the Dying is posting just before Halloween (All Hallows Eve, Dia de los Muertos) when many people in North America and Europe participate in rituals to both honor those who have died and to face their own fears of death, their own death or the loss of loved ones dear to them.
[A slight sidebar: walking through my neighborhood this morning I saw a family of skeletons in a neighbor’s yard, complete with a child skeleton walking a dog skeleton; cute beyond belief.]
Nonetheless, death and dying themselves still remain largely un-talk-about-able. As Dr. Kessler pointed out, Americans landed a man on the moon before there was a book published to help people understand the death and dying process.
Understanding the Needs of the Dying very much fits the overall theme of these posts: Resources for Recovering Resilience. I hope to offer here many practical tools as well as inspiring accounts for patients, families and caregivers companioning each other through life’s final chapter and beyond.
And with the aging of the boomer population in America, that’s more and more of us. In a different workshop years ago, I learned of this poem:
15 minute poem on Death
I feel the breath of death on my neck.
Without making up a story
I will only say-
IT IS TIME.
Death is here.
Death was never NOT here.
I forgot that this is a TIMED EVENT.
I had the luxury to forget about death.
Now I have the luxury of remembering.
May we have the luxury of experiencing hope, comfort and love as we accompany others or are accompanied ourselves through life’s final chapter. May these reflections, stories, and tools be useful to you and yours.
REFLECTIONS ON THE NEEDS OF THE DYING
Dr. Kessler makes the point over and over: how we relate to death shapes our experiences of grief. The more skillful in facing and accompanying through death, less problematic is the grief. Many useful pointers:
1. Death is not a failure
Death is a natural life process. “He loved us right up until the last minute” rather than “he didn’t make it.” “By helping others die in a way that honors them, we teach each other and our next generation how to die and perhaps make our own deaths more meaningful.”
Honoring the naturalness of death opens the dying process to a time of both potential peacefulness and potential wisdom, not victimhood. Everyone needs to be treated like a living human being, like they are important, always, and we human beings need that especially when we’re facing the completion of a life in this form, in this body.
“We owe the dying exactly what we owe the living – honesty, respect, and compassion – for they are fully alive and living right up until the end. The only difference is that now they need our help. We have an opportunity to provide that help, not as an obligation but as a privilege. We owe them the opportunity to be true to themselves, to discover death in their own ways, and to die in their own ways. We have an obligation to help them live and die with dignity, with their heads held high.
“Just as we have the need to live with dignity, we have the need to die with dignity. Dying with dignity means knowing that you r death will be just as meaningful and purposeful as your life has been. It means dying the way you want to die, not the way others have deemed proper or worthy for you.
“It doesn’t matter what the ‘right thing’ is. If your’re forced to accept it, your dignity has been assaulted.
“People lose, among other things, the ‘outer layers’ accumulated during life. They are no longer the chairman of the board or the friendly neighbor or the baseball buddy or the great Cajun cook. They let go of the roles of leader, teacher, worker, friend, athlete, mother, father, son, daughter, brother, and sister. The roles in which they took such pride during their lifetimes slip away as they’re thrust into the role of the patient. What are they left with? The way they see themselves.
“An elderly woman with terminal cancer may see herself as a little girl on a swing with her feet reaching for the sky, as a beautiful young woman standing at the altar, as a proud mother helping her baby take its first step. We may see her as an old lady with an oxygen mask on her face and an IV needle in her arm, laboring to breathe and unable to walk. What we see when we look at her is disease and impending death and so we often refer to her as “my dying mother” when we ought to say “my mother, who is dying.
“If they see themselves as being special and unique, above and apart from those worldly roles, then they retain their dignity. This is easy for some people to do, for their dignity is defined solely from within. Others need reinforcement from their loved ones and the medical system. That’s why it is so important for those close to the dying to treat them with dignity.”
2. The greatest fear about dying is about dying alone.
The greatest pain around dying is separation from those we love and from a life that has had meaning.
“Perhaps the saddest thing we can think of is being alone when we die. Throughout life we desperately want to connect with others – acquaintances, friends, family members, or loved ones. We become sad when those connections are broken by arguments, divorce, or distance. Losing these connections is even sadder when we face death, when our need to be with others who care for us is greater. That’s why not dying alone is a fundamental need.
“We isolate the dying by waiting in the waiting room. We isolate the dying by no longer talking to them and no longer listening to them. Sometimes we’re not with them physically; more often, we’re no longer with them emotionally. We isolate the dying by no longer talking about what’s going on. The widely held notion that the dying do not want to talk about death is a myth. They do want to talk about what is happening to them. We isolate the dying when we refuse to look at the world as they do. But there’s no reason why we can’t understand that both the living and the dying are in the same boat. The dying may be leaving sooner that the healthy, but it is still the same boat.”
The most compassionate gift you can give someone (yourself!) at this end of life transition is a loving presence and a caring touch and open communication. Honoring the rich history of the life, and witnessing the fullness and the fears of the dying experience, is more useful than you can possibly imagine at the time. Stay in connection; stay in conversation. Even without words, stay in communion.
“We don’t always have to have exactly the right words to say to our loved ones who are dying. It’s okay just to be with them without saying anything. The point is to be there for them. Our love and understanding will make themselves known.
“Many people are like Barry, a thirty-two-year-old television lighting designer who didn’t want to tell his dying father that his marriage was on the rocks. ‘What’s the point of telling Dad?’ Barry demanded. ‘It will only upset him. He’s old and sick. Why bother him with my troubles?’
“When Barry finally told his father about his bad marriage, his father was very supportive and understanding. They had a great discussion that would haver have occurred had Barry continued ‘protecting’ his father. Once the topic was brought up, the father told the son about an experience that he’d had in a bad marriage that Barry never knew about. The two men enjoyed a loving interaction that was possible only because the father was allowed to continue being a part of the family. We forget that sharing and helping each other are what life is all about.”
See the person, be with the person, be with the experience and the experiencer.
“A very busy nurse who had little time to talk to her patients told me that she once finally stole a few minutes to speak to a frail old woman she was caring for in the hospital. The nurse was surprised and delighted to learn that forty years earlier, her patient had won an Olympic gold medal for distance running. ‘I never saw her the same way again,’ the nurse told me. ‘There was so much more to her than I ever imagined.”
(And Dr. Kessler suggests, from decades of experience, leaving the person alone for 10 minutes every hour because many, many people will choose to die only when they are alone.) (And in another tidbit of wisdom gleaned from his years of experience, don’t measure yourself, the relationship, or the death itself by what happened in the last moments. These days, people can’t always make it to the bedside of someone who is dying suddenly. Focus on the big picture, the entire life, the complete relationship.)
“Even though they may be difficult, the last days you spend with your loved ones are ones you’ll remember vividly. At times you may feel as if you’re walking on eggshells, but everyone should be allowed to say what needs to be said. This is a sacred time because of the authenticity of the emotions that occur. We must let ourselves and our loved ones express feelings and emotions, no matter what the reactions may be. I am often in awe of the expressions of feelings between the dying and their loved ones. These feelings are among the purest found in life. Honoring these expressions is a holy obligation we have to each other.
“With each death we learn how to do it a little better; we become more experienced and comfortable with an experience that is never in itself comforting. We learn that the only thing that can sometimes comfort us or our loved ones in our presence. There are no instructions; it’s a process of trial and error, learning as you go. We have the need not to die alone. It’s much better for the dying and for the living if we do it together, the ultimate team sport.”
3. The second greatest fear about dying is fear of pain.
Management of physical pain has become a priority in modern medical care, and palliative care – providing comfort by reducing symptoms, pains and stress in addition to treatment – should be introduced as soon as there is a diagnosis of a serious illness. Treatment proceeds as aggressively and comprehensively as possible, but pain management and the comforting presence of caring others is a powerful support to treatment. Palliative care is different than hospice care, which does signal the end of curative treatment, but palliative care continues even in hospice or home care. Studies show palliative care significantly prolongs life and dramatically increases quality of life.
And given that all pain is personal and subjective, the more a person tunes into and communicates their pain to others, the more they can have a say in managing it.
“Pain is no one’s fault. I’ve witnessed hundreds of deaths without once seeing any correlation between the pain suffered and the person’s goodness or evilness. Pain is often a part of death, just as it is an accompaniment to birth. Good people don’t always die quietly in their sleep or pass painlessly. Nice people suffer just as much as not-so-nice people. Pain is not a judgment. It is simply a part of many people’s last days, weeks, or months on Earth.”
Management of emotional pain is just as important.
“If you’ve done everything you can to help control your loved one’s pain, you can simply be there. There is no medication for losing your life and everything and everyone you hold dear.
“The pain of loss can be sharp, shattering our control and thrusting our jagged edges to the surface. It can be deadening, dulling our senses and taking away our joy. It can be paralyzing, robbing us of the will to go on living. Whatever form it takes, the pain hurts terribly. If we are dying we have to find a way to say good-by to all we have known, loved, and cherished. If we are witnessing the end of life, we have to find a way to survive the pain of losing a love one.
“If she needs to cry, let her. Cry with her. Sharing tears is better than holding them in. Let her hold your hand; let her squeeze it when the pain hits. If she needs to scream, let her. Don’t tell her that she’s upsetting other patients or giving in to her pain. Let her scream; encourage her to scream; scream with her if you need to . Laugh with her, if you can. At the very end, when there’s nothing more to do, just say, ‘I can’t stop your pain. I can’t make it go away. All I can do is sit here. So I’ll sit here. Someone who loves you will sit here and hold your hand to the end. You won’t be alone.
“The pain can be so great, so overwhelming, that it can be touched only a little at a time. Whatever happens, don’t turn away from the pain. All feelings allowed. Lack of feelings allowed. We’re stronger than we think, and we’re never given more than we can handle. If we experience it fully, we can prevent the wounding that so many people feel when pain is not dealt with as it occurs.”
4. The next greatest fear about dying is fear of being a burden.
Hospitalization at end of life can be terrifyingly expensive, and the greatest cause of complicated bereavement is the financial difficulties a family has to cope with after someone has died. Of course, coping with staggeringly high medical bills in the overwhelm of caring for someone who is dying, going through one’s own very real anticipatory grief, can make it truly difficult to focus on the practical details of treatment decisions and the varying financial costs of treatment choices. Sometimes disagreements among family members can perpetuate treatment beyond what is reasonable for the patient or feasible for the family. Wise effort wherever possible can ease the complications of grief later.
“You cannot die on your own terms unless you participate in your death. Participating in these decisions requires advance planning and tremendous determination. “We have the need to participate in decisions concerning our care, to set our own goals and to change them, and to expect honest and informative care. That kind of honesty harms no one.”
Patients themselves can decide what treatments they want and what treatments they don’t want; They can initiate a POLST (Physicians Orders for Life-Sustaining Treatment and have their medical doctor sign it. That POLST travels with the patient and is a medical order that is honored by every medical practitioner, every medical facility. It never expires; it can be changed any time the patient wishes. An effective way – with no drawbacks – of keeping extraordinary measures within reason. (50% of all hospital costs are incurred by the 5% of the patients who are navigating end of life.)
Planning ahead and “getting one’s affairs in order” means working through the five stages of the dying/grieving process. (See Exercises to Practice below for practical suggestions for navigating these five stages of any major life change.) And then working through a decision making process which can sometimes be facilitated by a skilled professional when there are many decision makers in one family.
“It is best when doctors sit down with their patients and say, “I wish I had different news, but I have to tell you that it looks like you are dying. I don’t know when you are going to die. This is what I can do for you and this is what I can’t do for you. What would you like to know? How would you like to proceed?”
“Information is a kind of medicine to patients who must make decisions. How can we expect them to decide whether to pursue aggressive or passive therapy if they don’t’ know what lies ahead? Illness and death are never easy. Information may not change the course of your disease, but it will certainly help you chart your course through the difficulties ahead. That is why patients must be kept informed. And that is why patients must be willing to stand up to doctors who are unwilling to inform them. The stand may take the form of a simply, polite request. It may require cajoling, arguing, or shouting. Whatever it takes, insist upon knowing.”
[One tidbit I learned from somewhere else along the way: including in your will designating someone to have the power to close your online accounts, and providing them with user names and passwords. Otherwise, no one will have the legal authority to close down online banking etc. An invisible consequence of our digital age.]
5. Patients/families can focus on what is beneficial treatment as much as on what is effective treatment.
Dr. Kessler gives the example that all medical personnel and many family members are trained in CPR, which can be invaluable, even life-saving. But CPR is successful only 5% of the time in the best of circumstances (CPR means resuscitating someone who has died; CPR is never done unless the person’s heart has stopped beating. The chances of resuscitating someone who died healthy are slim; resuscitating someone already unhealthy when they died are even less so.) More quality of life will come from effective pain management, and that’s what patients/family members should be learning.
6. Shifting from curative treatment to hospice care is the hardest transition in the dying process.
Extra layers of support need to be brought in for patient and family in this transition. Dr. Kessler makes the point: “It’s wise to prolong living; it’s not always wise to prolong dying.” Longer stays in hospital are correlated with 5 times the risk for PTSD in the family and 9 times the risk of a prolonger grief disorder. Weighing benefits vs. burdens of treatment is part of the discussion. Focusing on what’s probable rather than what might be remotely possible is part of the discussion. Talking through decisions is part of the process. Kessler points out that denial of the reality of this transition is another way of abandoning the patient and leaving them alone in a dying process that is already happening.
Pro-actively increasing pain and symptom relief is helpful for patient and family. Increasing comfort and loving presence is helpful for patient and family. The patient writing letters or recording messages to be read/listened to at future dates (one year later, or a child’s wedding or graduation) can be helpful to patient and family.
7. What death looks like
Just as women have an easier time with the pain of childbirth when they know what to expect, people have an easier time with the pain of death when they know what to expect. (And just as childbirth can look gross and messy, sometimes dying looks gross and messy, too.) And it’s not always easy for the body to let go as we might expect.
a. Months before, the dying person’s world gets smaller: they go less places, they do less, they visit with less people. They begin to say good-bye to the normal elements of normal life – the weather, the stars, the evening news.
b. Weeks before, they leave the bed less, move less; they sleep more; the body winds down.
c. Days before, eating, breathing, body temperature change; hearing and vision fade. These changes can be more disturbing to family members than to the person who is dying. Researchers believe the body releases endorphins in the “agonal” phase of dying. The body looks agitated; the person may truly experience an inner peace. Knowing how common it is for a dying person to have rapid, shallow breathing or intermittent breathing or long pauses between breaths can be normalizing for family members. Even though the meaning of dying is extraordinary, the process can be quite ordinary.
d. Hours before, consciousness is drifting between the worlds. (See Stories to Learn From for accounts of visitations from the dead in the last moments of life.) Loving presence and caring touch are the links between the family and the person who is dying.
e. At the moment of death, the heart stops beating and breathing stops; the life force leaves the body. Family members need to take time to be with the transition, to stay connected emotionally; to allow their own transition.
f. How the family relates to these last hours shapes the experience of their subsequent grief. People who are living need to let go of their assumptions of a “good death” and relate to the death that is.
8. Tell the children.
Children cope with death better when they are prepared. That can mean learning about flowers dying and pets dying and seasons passing. Children can bury an aquarium fish that has died in the back yard, showing respect for the body even after death, rather than flushing it down the toilet so that it ‘disappears.’
“If children are old enough to love, they are old enough to grieve. Children have to learn to grieve, just as they learn to ride a bicycle or play the piano. We are their models, and they learn to grieve and express their feelings by watching us. It’s important to let our children see us grieve. It may be upsetting to them to see Mommy cry, but it’s even more upsetting to be pushed out of the room when they know that Mommy is about to burst into tears. “The less they know the more they imagine and what they imagine is more terrible than reality.”
1. Help children understand and make sense out of what has happened or is happening.
Tell children the truth – that Aunt Betsy has died and will not be coming to visit anymore. Explain that Aunt Betsy had a serious disease, and tell them the name of the disease. Let them know that not all diseases are as serious as the one Aunt Betsy had, that everyone else is in good health, and that life will soon be back to normal. Say that Aunt Betsy is gone but that we’ll remember her and love her forever.
2. Help them grieve or express their emotional response to the present or anticipated loss.
Children need validation. They need to know that their feelings are appropriate. Say something like. “I understand that you’re angry because Grandpa died. It makes me angry, too. I know you were mad because we weren’t able to do fun things this past year because I was taking care of Grandpa. I wanted to spend more time with you, but I had to help Grandpa. I know you’re sad that he’s gone.” Teach your children to cry by letting them see you crying. Let them know that it’s okay to be angry. If they don’t seem to be upset by the death, tell them that’s okay too. They don’t have to pretend to feel upset if they weren’t close to the person who dies.
3. Teach them that life goes on.
Let them know that even though Mommy is enormously upset over Grandpa’s death and would like never to go back to work, she’s taking three days off to take care of herself before returning to work. Let them know that they can also take time off to grieve, but then they have to return to school. We may be sad for a long time and we’ll always miss Grandpa, but life goes on and Grandpa would want us to go on.
4. Help them commemorate the loss, whether formally or informally.
Light a candle together. Take time to tell stories. Say a prayer or put up a favorite picture. Shannon and her young son bring flowers to her late husband’s grave on his birthday and Christmas. Vincent wrote a check, and his son donated his allowance, to Mothers Against Drunk Drivers in memory of the son’s friend who died in a car accident. On the first birthday after Grandfather dies, the Ellis family took out the old family albums. They looked through them, each selecting a favorite picture of Grandfather and talking about it. These small but important actions help to externalize the loss and encourage the expression of feelings.
“When deciding whether or not your child should attend a funeral, treat the funeral just as you would a wedding, graduation, or any other formal event. If you’re going to be busy at the ceremony and can’t attend to your child, then have someone else you and your child trust mind him or her. Children generally behave quite well at funerals if they’re given three things:
* Prior preparation: Tell them what’s going to happen, where they’ll be sitting, for how long, and that people may be crying.
* Support: Make sure the child has someone to comfort her if she is upset or grieving. If you’re going to be busy during the funeral or if you’re grieving too much to help your child, find someone who can help.
* Follow-up after the funeral. Talk about what has happened, what it meant, and what they thought of it. Help your children put the loss and the ceremony in proper perspective.
“I was recently at Marty’s funeral. Marty was an energetic eighty-year-old who lived by a lake and was a dedicated fisherman. He loved to teach his many young grandchildren how to fish, how to “read the water,” and how to “get into the fish’s mind.” I was amazed to see the grandchildren, who ranged from two to ten years old, rushing up to his coffin as it was lowered into the ground. A few adults, worried that the children wouldn’t be able to grasp what was happening, wanted to stop them. But their parents said that it was okay for the young ones to watch. As the coffin was being lowered, a child who couldn’t have been more than five said to another, “Oh, wow! Grandpa’s being reeled in!” Children will often intertwine things that happened in life with the rituals of death. This serves a useful purpose, helping to make the legacy of the person who died ongoing.”
* * * * *
“Death is like a storm. It is primitive, it is chaotic, it is a force of nature, and it wreaks havoc on our lives. But like the silence found in the eye of a storm, it is possible to find peace in the chaos, in the suffering, and in the dark lonely nights. It is possible to find peace in every death. You can find it only by removing everything else. When you release your anger, hatred, and unresolved feelings, there is nothing left but peace. Peace is a state of mind. It’s a quiet acceptance of what is happening, no matter how chaotic of difficult the situation may be. If you have found a quiet and still place in your mind, you are at peace.
When you are peace with yourself, you can die in the eye of the storm.”
POETRY AND QUOTES TO INSPIRE
[from poets and sages who teach us how to approach the dying process with peace and grace:]
May there be some beautiful surprise
Waiting for you inside death
Something you never knew or felt,
Which with one simple touch
Absolves you of all loneliness and loss,
As you quicken within the embrace
For which your soul was eternally made.
May your heart be speechless
At the sight of the truth
Of all your belief had hoped,
Your heart breathless
In the light and lightness
Where each and every thing
Is at last its true self
Within that serene belonging
That dwells beside us
On the other side
Of what we see.
– John O’Donahue
Peace, my heart.
Let the time for parting be sweet.
Let it not be a death, but completeness.
Let love melt into memory
And pain into song.
Let the flight through the sky end
In the folding of the wings over the nest.
Let the last touch of your hands
Be gentle like the flower of the night.
Stand still, oh beautiful end, for a moment,
And say your last words in silence.
I bow to you and hold up my lamp
To light you on your way.
– Rabindranath Tagore
On the Death of the Beloved
Though we need to weep your loss,
You dwell in that safe place in our hearts,
Where no storm or night or pain can reach you.
Your love was like the dawn
Brightening over our lives
Awakening beneath the dark
A further adventure of colour.
The sound of your voice
Found for us
A new music
That brightened everything.
Whatever you enfolded in your gaze
Quickened in the joy of its being;
You placed smiles like flowers
On the altar of the heart.
Your mind always sparkled
With wonder at things.
Though your days here were brief,
Your spirit was alive, awake, complete.
We look towards each other no longer
From the old distance of our names;
Now you dwell inside the rhythm of breath,
As close to us as we are to ourselves.
Though we cannot see you with outward eyes,
We know our soul’s gaze is upon your face,
Smiling back at us from within everything
To which we bring our best refinement.
Let us not look for you only in memory,
Where we would grow lonely without you.
You would want us to find you in presence,
Beside us when beauty brightens,
When kindness glows
And music echoes eternal tones.
When orchids brighten the earth,
Darkest winter has turned to spring;
May this dark grief flower with hope
In every heart that loves you.
May you continue to inspire us:
To enter each day with a generous heart.
To serve the call of courage and love
Until we see your beautiful face again
In that land where there is no more separation,
Where all tears will be wiped from our mind,
And where we will never lose you again.
— John O’Donohue
STORIES TO LEARN FROM
The moment of death is said to occur when brain, respiration and circulatory systems all irreversibly shut down. In the moments or days before, an astonishing number of people report visitations from people who have already died coming to greet the dying person and welcome them home. Kessler has written a separate book, Visions, Trips, and Crowded Rooms recounting many of these stories, partly because they are so universal yet so un-talk-about-able. I’ve included two of them here because it’s so important to have permission to talk about them.
What They Don’t Teach You in Medical School by Jack
“After graduating from medical school, I wasn’t sure which branch of medicine I wanted to dedicate myself to. Then I did my oncology rotation at a hospital in Michigan and something grabbed me. Seeing patients who were so sick was difficult, but when the oncologists were able to give them more time or improve their quality of life, it was wonderful. And seeing patients in remission, going back to their everyday lives, seemed like the best kind of medicine for me. I decided that this was my calling.
“It’s interesting being a doctor in a family. My family still sees me just as Jack, and my medical degree doesn’t give me any advantages. It’s funny when your mother’s home remedy beats out scientifically tested medicine. It keeps you humble and grounded.
When I went into oncology, it never occurred to me that I might see one of my own loved ones terminally ill. So when my younger brother, Mike, who was just 41, had cancer it was really hard for me to act like a doctor and not a saddened man who was afraid to lose his brother.
Mike was just hitting his stride; he enjoyed his career and was seeing a lot of success in his real-estate investments. It seemed incomprehensible that his cancer was advanced, and it was almost impossible for my family to face the reality that it might be too late. I tried to remain hopeful, but I knew too much.
As my brother became sicker, family and friends would turn to me for an update on his condition, but I wasn’t his physician. They just assumed that I would know what to do, or think of some new way to treat him. It was strange to suddenly have the respect I’d always wanted from my family, yet this wasn’t how I wanted to get it. I wanted to be the one to show the best way to heal a cut or determine whether my nephew needed to get his tonsils removed – not to be the one to explain that Mike was dying. Watching my younger brother go through all of this was ripping me apart.
One day near the end, my mother and I were sitting with Mike, who was quiet but not sleeping. Then he suddenly started talking, as if there was someone standing right in front of him (he definitely wasn’t addressing my mom or me). Mom and I looked at each other in a way that said, “What is this?”
We soon realized that Mike was indeed talking to someone, and as we listened to the conversation, it dawned on us that he was speaking to my father’s parents. He had been very close to them and loved them both very much. When Grandma died, Mike started spending more time with our grandfather. Since my cousins and I were away at school, we were grateful that my brother was there and could visit him so often. After Grandpa died, it hit Mike very hard. So the notion that it was my grandparents who came to by brother as he was dying wasn’t that surprising.
As a doctor, it’s very easy to dismiss this sort of thing until you see it firsthand. Could my brother’s vision have been a dream state. Was it a result of oxygen deprivation? A side effect of the medications? All were possible, but for my mother and me, none of those options felt right. This felt profound. Real. Neither one of us wanted to interfere, so we just observed.
For the next few hours, Mom and I watched Mike on and off in conversation. We could never quite make out exactly what he was saying, but we could hear him call both of my grandparents by name. He also had a tender, sweet look on his face. Of all the things that we were doing for him – from end-of-life care to making sure he got the best of everything – this “visit” seemed to bring him the most comfort.
Before this episode, there was a sense of struggle and tension in the air, but now there seemed to be only peace surrounding my brother. I truly believe that it was a result of my grandparents’ visit as he died.
One family member asked me, “As a doctor, what do you make of this?” And I responded, “I don’t make anything of it as a doctor. I don’t have a scientific explanation. I only have my own experience to draw from. I took it at face value and knew it was an authentic part of the process.”
When my patients have similar experiences, I don’t question it as a doctor. I just accept that this is what’s going on. If it feels real to a patient, so be it. But this is definitely not the kind of thing they teach in medical school.
* * * * *
No Tip Required by Angela
I am a psychologist who works with families and couples, and I specialize in addiction and chemical dependencies. When I counsel couples with so many problems, I often think back on my own parents, Helen and Milton. It makes me realize what a unique and wonderful relationship they had.
My parents were married for 62 years and could finish each other’s sentences. They shared everything, and one of their enduring qualities was a quirky sense of humor. Mom told me that when she found out she was pregnant with me, she’d asked Dad, “You sure you don’t want to carry this baby?” And when my father got a speeding ticket, the police office was still standing there when Dad looked over to my mom sitting beside him and said, “Honey, you speed, too. Would you like a ticket?”
My father’s sense of humor also carried over to his work as a dentist, and his patients loved having a doctor who could make them laugh. I loved laughing with both of my parents, too, and decided they were the funniest parents a girl could have.
My parent’s used humor for life’s serious moments as well. For example, when my mother was diagnosed with breast cancer and needed a radical mastectomy, she quipped, “Oh, Milton, be a man – volunteer your breast. You don’t need yours like I need mine.”
One morning when Mom was getting up, she had a sudden aortic rupture and died instantly. She was 80. Dad did his best to cope, but he’d miss his beloved partner for the rest of his life. He never made those jokes with anyone else, since that form of communication was an integral part of their relationship.
Five years later, my dad was in a hospice unity after a long battle with bladder cancer that had spread throughout his body. My father and I had become especially close after my mom died, and I stayed by his side as much as possible.
Dad was feeling well and reading the Sunday paper one day when I said, “Hey, you’re looking a little rough around the edges. How about a shave?”
“Sure,” he replied.
Since he was having trouble holding a newspaper, holding a razor would be even more difficult, So I quickly blurted out, “Welcome to Angela’s Barbershop!” and started looking around the bathroom. “Dad, did you bring you razor?” I asked.
He couldn’t remember, so I called the nurse and asked if she had a spare shaving kit. I walked over to the nurses’ station and waited as she gathered the supplies for me. I suddenly heard my dad talking to someone and realized that the nurse hadn’t turned off the intercom in his room. I couldn’t make out what he was saying but figured that one of his friends must have dropped by. The nurse walked back with me, and we found my father in the room all alone.
“Who were you just talking to, Dad?”
“Helen,” he causally replied.
“Helen, as in Mom…who is dead?”
“That’s the one.”
“Do you know that she’s dead?” I asked as gently as possible.
“Of course. I was with her when she died.”
“And she’s here now?”
“Yes. I know it’s strange, but it’s true.”
Here, the nurse chimed in: “It isn’t unusual for a dying person to have loved ones come to greet them.”
“I’ve heard that,” Dad said, “but I don’t believe in it.”
“But you just said Mom was here,” I reminded him.
“Well, I must be hallucinating from the drugs.”
“The only medication you’re on is to help with your nausea,” the nurse told him, “and it isn’t known to impair a person’s thinking.”
Dad seemed a bit irritated. “Okay, so maybe I’m wrong – maybe we do get visits. Am I going to get a shave or what?”
I gently patted some shaving cream on my father’s face. He glanced back to look over his left shoulder and said, “Helen, are you sure you don’t want a shave, too?”
When I just stared blankly at him, he explained, “Your mom is laughing.”
“What is it, honey?” he asked, as he could see that I was starting to tear up.
“I just realized how much I’ve missed listening to you and Mom joke around.” During the rest of the time, he continued talking to my mother. After he’d been quiet for a while, I asked if she was still in the room.
“I see her but still don’t quite believe it. Maybe I really am hallucinating.”
I said, “I work all day with people who hallucinate because they’re hooked on opiates and pain meds, but you’re not on either of those, and this doesn’t seem like a hallucination. I know you so well, and this is exactly how it felt when you and Mom were together. I just wish I could see her, too.”
He looking in the direction where my mother was. “Can Angela see you?” he suddenly asked. It seemed as if he were interpreting a foreign language when he finally replied “She loves you very much, but it’s not time for you to see her.”
“Is she, um, solid looking, or does she look like a ghost?”
“She’s a solid figure…and a nice figure at that. No ghost here!” he assured me. “You know, when I was a kid, I learned that the smallest thing in the entire world was an atom. End of story. That was the fact, but now we know that there’s so much more…so maybe your mom really is here.”
“How do you feel right now?” I asked, always the therapist.
“Happy! I’m with my wife of more than 60 years.” He paused for a moment and then went on. “You know how much I love you, Angela. If your mom can be here for me, then we’ll both come for you when it’s time. But for now, I think I’d like to take a nap with my clean-shaven face.”
“That sounds fine, and by the way, no tip required. You go spend some time with Mom. I love you.”
“I love you, too,” he said, closing his eyes. Almost as if he were in a dream, his lips mouthed some words as he dropped off to sleep for the night.
Dad died the next day. I now know that love is more powerful than I ever thought possible, because not even death could diminish the bond between my parents.
EXERCISES TO PRACTICE
In working through these five stages of dying/grief [and they don’t necessarily always follow this order], ask yourself: What is in my power to change today?
The five stages of dying, or the five stages of grief, are the five stages of any process of change, any major change or loss.
When we don’t know what’s going on, fear arises. A new reality shakes up our assumptions about life. We go into denial to avoid the feeling of the rug being pulled out from under us. It’s important to honor the natural rhythm we human beings have of facing reality, distracting with a different more comforting reality, back and forth. We all open and close about difficult experiences all the time. When someone else is in a closed moment while we’re in an open moment, we’re out of sync and we can assume that the other person is in denial. Sometimes it’s hardest to talk about difficult things like illness and dying with people closest to us. Coming out of denial is essential, but it’s also essential to come out patiently and respectfully. How we work with our denial gives a bit of sense of control still as we face the unknown.
Anger has a powerful and positive purpose – to protest and protect us from injustice, betrayal, harm. When we first become aware of death as now an imminent reality, we will naturally protest the loss of vitality still being lived, the loss of potential not yet realized. The passing on of someone still needed and wanted here. Anger can fuel us and a loved one to act, to come out of denial and see clearly what’s actually about to happen and take steps to address the change/loss effectively.
And anger, like any strong emotion, needs to move through to acceptance. Elizabeth Kubler-Ross felt that any anger that lasted longer than five minutes was tapping into old anger, or was a defense against deeper emotions of fear or grief. Sometimes we and/or the person dying needs to come to terms with all of their life, not just this latest challenge, with understanding, compassion and forgiveness. As I’ve learned to teach in the Mindful Self-Compassion course, “No one is a bad person. They’re just suffering and handling it poorly. If they could do it better, they would.”
You can listen to someone’s anger which will often help dissipate it. You can separate from the person out of your own self-care, but still stay connected. Take a self-compassion break and come back out of compassion for them.
Very often bargaining becomes strategizing: “I’ll shape up!” “I’ll stop drinking.” “I’ll treat my kids better.” This stage of the dying process can inform/transform how we use the time we have. As Stephen Levine teaches in his death and dying workshops: 1) If you knew you had only days left to live, who would you want to call, and 2) what would you want to tell them. 3) Call them and tell them now.
Bargaining can actually be a time to bring relationships current rather than “protecting” or denying. This can include resolving unfinished business and healing buried resentments.
Sadness, grief and depression are very normal responses to the experience of imminent, ultimate loss. Dr. Kessler suggests they are as common as the common cold. Rather than “fixing” the depression, it’s more helpful to allow it and support a person through it. If people have permission to be sad and grieve, they are far less likely to get stuck in depression. And remaining connected to others is the most reliable protection from or way out of depression.
Acceptance may come in phases, and all the stages gone through many times. There may be acceptance of the diagnosis, then more work to accept the treatment, then more work to accept the ending of treatment. Various inner parts may have different struggles around acceptance; we need to be accepting of the difficulties around acceptance.
Acceptance opens the door to perceiving life and death in a bigger perspective. “I’m less afraid of life because I have found peace in death. Life is now an adventure to be savored until I die.” “I have found purpose in life. I make decisions on what I want to do with the time I have left. I do what gives my life meaning and makes my heart sing. I paint, write, volunteer, act, and parent.” “An open heart is an infinitely greater blessing that death is a tragedy. Let us all take comfort in this knowledge.”
Dr. Kessler suggests a sixth stage of the dying/grief/loss process – that of finding meaning in the experience. That is true in coming to terms with any life experience. The moment we turn the regrettable moment into a teachable moment, the moment we find deeper truths and wisdom in the experience, that’s the moment we can begin to transcend the experience of difficulty and embrace the experience as it is. The more we examine the meaning of death, the more meaning we bring to life.
Finding meaning becomes the legacy we leave behind.
As I was preparing this newsletter, many friends and colleague shared with me many other resources about death and dying. I’ve decided to keep it simple and focus on Dr. Kessler’s work. His website, www.grief.com, offers links to many, many other resources as well.
The Needs of the Dying: A Guide for Bringing Hope, Comfort, and Love to Life’s Final Chapter by David Kessler. Harper Collins, 2007.
Visions, Trips, and Crowded Rooms: Who and What You See Before You Die by David Kessler. Hay House, 2010.
You Can Heal Your Heart: Finding Peace after a Break-Up, Divorce, or Death by Louise Hay and David Kessler. Hay House, 2014.