Lani Leary's Blog, page 2

The end of treatment is not the end of hope

I am often asked how to go on caring for a loved one when there is no further hope for cure.  There seems to be the interpretation that to give up further treatment means to abandon all hope.  When all treatment options have been exhausted and a cure does not appear possible, loved ones report feeling guilty and angry that they are giving up hope.  I believe that when a cure is not possible, we can continue to care and hope.  But we reframe hope, and focus on those things that are realistic and meaningful to hope for.

 

You do not have to abandon hope.  We hope for the future, whether that future is the next minute, day, or year.  We are taught, trained, and reinforced to look forward and beyond this moment, and yet, as I trust you have discovered, it is this moment that turns out to be the most precious.  We hope for each moment to be meaningful.

 

In the absence of cure, we can hope for compassion, care, comfort and intimacy.  We can provide those ways of being with our loved one.  We can advocate that the healthcare team responds in those ways and make sure that our loved one experiences those elements of hope at the end of life.

 

None of us need to “resign” our energy, hope, and courage because our life is limited.  We all live under the reality that life will end; we are all vulnerable; we all live with limitations.  And yet we do not crumble under the reality; instead, we use this universal and inevitable reality to motivate us to wake up, be fully present, and love despite our vulnerability.

 

Embracing hospice, and what it can offer, does not mean we let go of hope.  Hospice is a way of living that focuses on changing the experience of living with a terminal illness.  Hospice care emphasizes meaningful days, weeks, and months, in order to ensure comfort, dignity and choices according to one’s values.  Letting go of the hope for a cure does not mean that we have nothing to hope for.  We hope for love, comfort, intimacy, and to make a difference. 

 

The end of curative treatment does not mean the end of care.  When a person chooses hospice care they are choosing palliative care, for both themselves and their loved ones.  Palliative, or comfort, care means that an interdisciplinary team concentrates on affirming life and the person’s values so that they can participate fully on those things that bring the most meaning.  Bringing in a team of professionals includes physicians, nurses, social workers, and pastoral counselors to provide a continuous cycle of care…this is the opposite of giving up hope! 

 

As loved ones, caregivers, and patients we do not have to stop fighting.  But instead of fighting against something (illness), perhaps fighting for something might make a significant difference in how our loved one and we experience this most important time together.  Fighting for love might mean that we redefine hope at the end of life.  The doctors may not be able to offer further treatment but we still have choices; having choices means you have power and hope.  Despair comes from the resignation that you do not have any choice at all.  Count your choices: for attitude, presence, peace, thoughts, actions, and love.

 

Our resolve to hope for instead of fighting against may be just the change in perspective that provides the comfort, peace, and presence that will matter.  As painful and challenging as this time is for both patient and loved ones, sharing an abiding presence of love can transform this time into the richest and most intimate time in a relationship.

 

The value of ceremonies

I recently received an inquiry from a family grieving the death of their daughter from an accident 5 years ago.  I think this is a common question, and speaks to a valid need for community and support:

Dear Dr. Leary:  Why do we find meaning in attending the “In Celebration & Remembrance” ceremonies year after year?”  Friends may say this is really sad that we have not “gotten over” the death of our daughter, but for us, we have a chance to once again feel her memory and be with people who understand this journey.  Why do we keep returning? Is there something wrong with this?  

It takes great courage to grieve, because it asks you to be open and vulnerable to your deepest wound.  Your grief exposes you and can make you feel out of control.  It takes courage to feel your pain and share it with others.  It takes courage to learn how to live in a new world, in a new way, without your loved one.

But in our culture, the bereaved most often report that they feel alone with their grief.  You may have felt abandoned just weeks after the funeral.  You may have felt as though you were on your own, trying to navigate this unknown territory by yourself.  The bereaved often say that they feel ashamed that their grief has not abated to other’s timetables.  That is, until we find a community of others who know our experience of death and grief; who share our common language; who also know what we need and what helps.

You return to rituals and ceremonies that honor your loved one because you find meaning and solace in a shared experience with love and loss.  During these ceremonies, rituals, and celebrations you feel you are in community with each other, and the connection is what makes your loss more bearable.

In this community of the bereaved you have created a safe space.  You are a family and you are as different as you are similar.  While each of your loss is unique, each one of you is the expert for your grief alone, but you all grieve and are in community.  You share the human condition of being vulnerable and that is what connects all of us.

Each of your heartaches is unique and none of it is common…but you have much in common. You grieve because you have loved.  You are in pain because you felt an attachment.  You come together again to remember and honor that love and connection, and you come to these remembrance celebrations because it is here that you are given permission, time, safety, and validation to grieve.

Together, during these remembrance celebrations, you do not need to be afraid that you will forget or that your loved ones will be forgotten.  You can speak their name; you can tell their stories; you carry on their legacy; you share your loved one with others.  Just having a caring environment in which you can express your feelings and be heard is profoundly healing.

All grief needs to be blessed, and in order to be blessed, it must be heard.  Someone must be present to your expression of grief, someone who is willing to hold it by listening without judgment or comparison. When you wail or tell your story of loss, it is based in your need that your loss not go unnoticed—the death of your loved one will not be overlooked, and your loved one’s place in the world will be marked. Grief is an expression that validates your loved one’s existence in the world and acknowledges that love for a person does not die just because she or he did.

You return to these ceremonies because it is helpful.  You return because remembering matters.  There is nothing wrong with returning to love.

 

Listening Lessons

As a psychotherapist I think of myself as a professional listener.  Listening is a ministry.  It appears to be passive so most people do not perceive the act of listening as “doing” for another person.  But when I listen, much more is involved than just my ears.  To truly listen is to engage my ears, my eyes, my heart, and my intuition.  It is to open so fully to another person as to take their story into me and share it on every level.

We read to know that we are not alone, to believe there is someone else out there sharing a similar feeling or experience.  We see a therapist or counselor so that they might hear us, acknowledge our story, sit with us in our pain, and reflect to us that our feelings are real and that we are not crazy.  One does not need to understand another person; what we are hungry for is to be seen, heard and accepted.  We long to feel held, and listening is perhaps the best vehicle for that holding.

When I listen deeply to another, it is as though all my senses and my attention surround and hold them and their story.  Listening is the art of hearing and experiencing what the world is like to the person talking.  It is a surrender of my assumptions, prejudices, and experiences in order to know how it is to be that other person.

Listening with the heart does not ask that you do it “right”, but only that you do it with attention and intention.  If listening is genuine, healing takes place.  The listener holds the energy of ideas, confusion, joy, pain, or questions until the speaker feels safe and heard.  The listener acknowledges the world of the speaker.  The healing that happens is the speaker’s own personal recognition and acknowledgment of themselves.  Its as though a soothing mantra echoes in the rooms of their heart, “I am seen, I am known”.  The listener does not actually heal, but the act of genuine listening opens the speaker to their own healing potential.  To be heard, and seen, and known is to heal the spiritual disconnections, physical discomforts, and intellectual confusions.

So listening is a ministry, an act of holding another and acknowledging their story as real and sacred.  Listening is also a discipline.  I use the disciple stance that asks of me nothing more than remembering who I am, where I come from, and what I represent.  I am a reflection of Spirit; I am connected to all sentient beings; I am here to love.  Remembering that, it is a simple task to reflect love and let the image of a great listener wash over me.  I know that I am listening and modeling the discipline when I experience what I call the halo effect.  It is a visual phenomenon that has happened often to me, and I am now confident and not frightened by the intense level of intimacy that I feel when I am connected with another person and surrounded by this uniting halo.  It is a sense that the energy borders and separation that had previously encircled my physical body have expanded to include the energy of the person to whom I am listening.  In that moment of deep listening, I see a beautiful golden aura that envelopes both of us.  It is a sparkling ring of light around the two of us that makes me feel that we are no longer separate beings, but connected on every level.  The space outside the halo looks like a blur, further accentuating my attention on the other person.  Perhaps it is the loss of attention on my body and its little discomforts or annoyances that so often get in the way of being fully present with another person.  I have stopped wondering “how do I look?” or “do I have lettuce in my teeth?”  I have stopped giving room to those distractions that take my focus from another person.  The chatter in my mind ceases and my senses are sharper, keener, as though my body were at once one big ear, one big eye, one highly tuned radar of intuition.

This phenomenon is a type of state-bound consciousness because upon leaving this “place” and this way of being it is common that I am not able to recall the details of what was said, only that it was shared and received at a very deep level.  The other person was seen, heard, and acknowledged from a soul level.  It is similar to waking from a profound dream state, unable to remember the details of the dream, but knowing that something important happened while you were asleep.  If you can disengage from the struggle of remembering, you can trust that a level of healing occurred, and you both have been touched at a deep and profound level.

Listening is a mystical practice.  Listening is a prayer.  As a listener I must be still, serene, and accepting.  When I am still and receptive in the act of listening it is to allow the speaker to see themself clearly reflected in a still lake.  The still water accurately mirrors the image presented.  If there are ripples from the listener’s reaction or defensiveness, the image would be distorted and contorted.   If there is anything less than full attention, the listener’s reaction has created its own agitation superimposed over the original soul material, and that is a disservice to the speaker.  Real listening is being that still lake, reflecting the original.  It requires a faith in the other person, believing that there is a divinity and a wealth of resources within that person.  They do not need to be fixed or corrected or educated.  The gift that is called for is listening.  In the deep calm of the act of listening, people tell me they feel healed.

I had the honor to be with a woman dying of leukemia, whose bone marrow transplant was unsuccessful.  More painful than the weeks in the isolation unit, losing her hair, and the transplant itself was her desperate struggle to be loved by her broken family.  Throughout her short life she had been abandoned by an alcoholic mother, abused by an angry father, and humiliated by grandparents.  In her last months, knowing that the transplant was unsuccessful and the leukemia kept feeding on her body, she fought her hardest battle to make peace with her parents and ask for what she needed.

Carla’s father responded by traveling to the Cancer Center to be with her for her transplant.  But, she said, he was only with her physically, and she felt the old sting of separation and alienation from the man from whom she most wanted to feel love.  And gradually, her determination and fight soured into anger and resentment.  She looked like a red roaring flame of rage, and the tone of voice hissed like a coiled snake.  The nursing staff confronted her, avoided her, and told me they felt drained.  Carla told me she wanted to shrivel up and die.  She felt like an old prune without any juice left.

Between her words, I heard her grief, frustration, and her longing.  She had worked so fiercely to build up hope and share love, but she now believed that she had used it all up.  All that was left was the anger, and that was devouring any energy that was left.

I held out my cupped hands and asked her if she would allow  me to keep her hope and her love for her in a safe place.  “I will keep it in a chamber of my heart, under lock and key”, I told her.  I would guard and nurture those energies, and she could have the hope and love back whenever she felt strong enough again to carry it herself.  It was hers and I was merely holding her potential for healing, because I had faith in Carla and her own resources.  She needed a guardian for her struggle; she needed an outside mirror to remind her that she once experienced love and healing, and could again.  She needed permission for her feeling of disappointment; once validated, her disappointment was only part of picture rather than demanding center stage.   And Carla needed a way and a place to allow the  energy of anger and resentment to spend itself dry without adding to her own or others’ dis-ease.  Carla needed time to remember who she was and what she represented.

It was a simple act of holding  that I performed.  Sometimes it is just a part of ourself that needs to be held, cradled, comforted, protected.  In Carla’s case, it was her healthy, hopeful, loving Self that needed a safe space. I created a visual image by cupping my hands, showing Carla where she could lay her hope and love, like a wounded child into a caretaker’s arms.

Weeks later Carla told me she felt she had made peace and that she felt strong enough to take back her hope and love.  She told me that I had shown her a way accept all the parts of herself, because I was willing to listen, accept her and all her feelings, and give her the time to be with her rage.  She did not feel that she could have attended to that work if she had been shamed, judged, or denied.

Carla died soon afterwards.  When I think Carla now, I remember a snapshot of time as I held my cupped hands towards her and she put both her hands in mine.  That moment was an act of faith in her own powers of resolution and healing, and in my ability to nurture and safeguard a precious part of her.  And in the next instant I remember the moment when she asked for her hope and love back, and the courage that it must have taken to believe in the possibility of peace.  That peace was also her healing.

We need courage & community to grieve

In memory of the 20 children and 6 adults who died in Newtown, Connecticut on 12/14/12:

It takes great courage to grieve. Grief asks us to be honest, open and vulnerable…to expose our underbelly and try to make sense of what is messy and feels out of control. It takes deep courage to share one’s story with their whole heart. It takes great courage to feel one’s pain and to learn to live in a new world, in a new way, without our loved one. Grief is such exhausting work!

You may feet abandoned and alone with your grief. You may feel as though you are on your own, trying to navigate this unknown territory by yourself. But what we all have in common, what we share, is an experience with love and loss. A sense of connection and community is what makes our grief bearable. Grief is what we all have in common.

You are part of a community that has loved and has grieved. Chances are, no matter when the death occurred, you are still grieving. While each of your losses is unique, and each one of you is the expert about your grief, you are connected and are in community. We all share the human condition of being vulnerable, and that is what connects us at the deepest level.

Each heartache is unique and none of it is “common”, but we all have much in common. You grieve because you have loved. You feel pain because you felt connection.

All grief needs to be blessed, and in order to be blessed, it must be heard. Someone must be present for your expression of grief, someone who is willing to hold your feelings and your story by listening without judgment or comparison. When you wail or tell the story of your loss, it is based on your need that your loss not go unnoticed. We need to know that the death of a loved one will not be overlooked, and that our loved one’s place and significance in the world will be marked. Grief is an expression that validates our loved one’s existence in the world, and acknowledges that she or he mattered.

Death does not get to take away the love you feel, or the connection you have with your loved one. Death does not win. We live with our grief, but we carry it with love. We hold on. We take our loved one forward into the future with us, into our life. We do not forget. We do not “get over it”. We get on with it.

My feature on AfterlifeTV with Bob Olson

Late last month, I was featured on Bob Olson’s “AfterlifeTV” internet show. We spent the hour discussing Finding Peace and Meaning in Death and Bereavement. I’m flattered that the show already has nearly 3,000 views on YouTube, and I hope you might have time to take a look for yourself. As always, feel free to contact me with any questions that come up during the show!

Hospice Care is the Gold Standard

Hospice care is a “gold standard” for end-of-life care. Hospice focuses on the patient’s quality of life and pain management, or palliative care, as its core objectives. The hospice philosophy and care response emphasizes the patient’s dignity and choices. In addition, family education and guidance means support before, during, and after death for loved ones and caregivers. Hospice care is valuable for both patients and their loved ones. However, hospice is not widely used in most states and when it is, dying patients commonly have the support of hospice care for less than a week. This is needless suffering when 70% of Americans report that they want to be at home with loved ones at the end of their life, but health care resources and the family ability to respond often outweighs patients’ wishes. We need information and collaboration with physicians to suggest hospice services to patients sooner rather than later.  If a physician does not offer hospice as an option to end-of-life care, the patient or their advocate, family, or caregiver should start the discussion.

Making a decision for hospice services is not a loss of hope.  When your physician finds that there is no cure or further treatment available for a terminal diagnosis, we can find new focus for hope: the hope for compassion at the end of life; the hope to be surrounded by loved ones and not emotionally abandoned; the hope to be pain-free and comfortable; the hope to be able to share one’s legacy and be told that their life mattered; the hope to be loved unconditionally and cared for with dignity.

My interview on Paradigm Shifters

Check out my recent radio interviews on the BBS internet radio shows: Oct. 9 on “Paradigm Shifters” (below) and on Oct. 11 with “Donna Seebo”.

Recent radio interviews

Check out my recent radio interviews on the BBS internet radio shows: Oct. 9 on “Paradigm Shifters” and on Oct. 11 with “Donna Seebo”.

Presentation at the Decatur Book Festival

I will be speaking about my book, No One Has To Die Alone: Preparing for a Meaningful Death, at the Decatur Book Festival on Saturday, Sept. 1 at 10 a.m.  The Decatur Book Festival is the largest independent book festival in the country. My goal is to bring hope and inspiration about care at the end of life, so we accept the great privilege of being present for our loved ones through illness, ageing, or decline. I plan to teach skills, attitudes, and perspectives so you know that you can make a difference, and you can intervene to lessen pain, anxiety, and fear for everyone.  Please join me in Decatur or online as I share tips, tools, and skills.  See more at www.decaturbookfestival.com

 

“Let’s talk about death…” article in Honolulu Star Advertiser

The Star Advertiser wrote an article about my work discussing death and my new book. I have shared a copy of the article below in this post, or you can view the original article at the Star Advertiser website (requires an account to access).

Let’s talk about death — and try to be there for the end
By Wanda A. Adams
Special to the Star-Advertiser
POSTED: 01:30 a.m. HST, Jul 31, 2012

Many people wouldn’t consider death suitable kitchen table conversation.

Lani Leary would.

For more than 25 years, the Kane­ohe psychotherapist, grief counselor and consultant has been helping others die with grace and dignity, and — more to the point — helping their loved ones realize it is part of love to aid in the inevitable goodbye.

The author of a new book, “No One Has to Die Alone: Preparing for a Meaningful Death” (Simon & Schuster/Atria Books, $15), believes firmly we shouldn’t wait until death is imminent to discuss it with our spouses, our partners, our parents, our children and certainly with the professionals who can attend to the business and legal matters that must be handled in advance if the wishes of the individual are to be carried out and respected.

With children, especially, Leary said, death should be on the table — in age-appropriate language — just as, in good parenting, drugs, sex, bullying, relationships, college and careers should be discussed, because death is the one absolute certainty in our lives.

There is time. The Centers for Disease Control and Prevention’s National Vital Statistic Reports show most of us will not die unexpectedly; 90 percent of Americans die of an illness of some length.

Leary has been a witness at more than 500 deathbeds. “The book’s title is meant to acknowledge that the greatest fear of the dying is not their imminent death, not even their pain. Their greatest fear is being alone,” she said. “We can be their companions in this.”

Another factor is distance. Older people in America rarely live in a family home. There is little opportunity for them to tell their stories, to say whatever they might wish to say or do, to just be there and watch life go on around them. Instead, if they can afford it, they buy a funeral plan.

It concerns Leary that we have given over the whole matter of death to the funeral industry.

“We are a culture so youth-oriented that to us, aging is weakness, something to be put away. We have no experience with it. We do not watch it,” she said.

There is no time with the body, no laying out, no period of memory and mourning that is not clothed in solemnity and … well, Leary would say, pretense.

We’re not allowed to wail. We’re lucky if we’re allowed “a minute alone.”

Today she has the skills, the training, the competence she didn’t have when a seminal incident changed her own life and, in effect, put her on her career path.

As a young girl, when she lost her mother at the age of 13, she never got that opportunity.

She recalls an ordinary day when her mother, perhaps anticipating the end, not feeling well, turned to her out of the blue and said, “I love you so much.” Leary responded with the feigned indifference of an adolescent. A few days later her mother was hospitalized suddenly.

Leary never saw or spoke to her again. She knew nothing about what happened — it was a rare disease of the immune system called Guillain-Barre syndrome — and was never allowed to go to the hospital.

Later she dared not approach her father in his own overwhelming grief.

“The greatest act of kindness and compassion would have been for someone to ask me, ‘What do you need to know?’ But no one did. People didn’t explain death to children. They thought, like the English, ‘least said, soonest mended.’”

She held these things in her heart. And years later, after years of study and caregiving, Leary was able to do for her cancer-stricken father what she had been unable to do for her mother: to be there, to ask him what he wanted and needed, to provide all she could.

She closed her practice on the mainland to be here in Hawaii with him to the end. It is, she said, an unexpectedly rewarding experience. “When we have done all we could, we have less guilt, less regret. It doesn’t mean we won’t be sad, but we will know that we have done what we could do,” she said.

She is a great believer in the use of hospice services to keep the dying in their homes and manage their pain, with professionals there to answer the family’s questions and with the person’s desires respected.

But isn’t it hard to bring up this taboo subject? What if Mom thinks you’re trying to get rid of her? What if Dad doesn’t know what he wants?

Knowledge is power, said Leary.

The book summarizes what she learned from the thousands of dying patients she worked with, what she wished she had known before her mother died. It encourages readers to be brave and proactive about their own death arrangements, not to fear death, but to embrace it as one of the experiences of life.

In summary, she said, “I fully believe that enhancing the quality of a person’s death enhances the quality of our life. I believe that those who engage and participate in the death of their loved ones experience their grief in a softer way than those who, for whatever reason, do not participate. Participation and service heal all of us at the deepest emotional level.”