Being Present with the Bereaved

To be present to those grieving often brings up feelings of helplessness similar to those experienced when around the dying.  Often this helplessness is experienced as not knowing what to say or do.

People often assign a timetable to grieving and make assumptions as to how long each phase should last.  In fact, everyone has their own experience; the time taken to grieve varies between individuals. Unfortunately, many of the grieving find themselves judged if their grieving doesn’t match some particular schedule.  Grief is not linear and doesn’t follow any predictable trajectory.

Grieving is always a subjective experience. To aid the grieving, there is no necessity for articulation, platitudes or suggestions. It is, rather, simply being there and being present to the grieving individual that is truly therapeutic.  There’s great value in listening to the person and following their lead. In this way, we can demonstrate genuine empathy.

The grieving often find that the hardest part comes after an initial period in which they seem to run on automatic, experience life as surreal, and are surrounded by people. However, once the shock recedes and others go back to their routines, the bereaved are thrust back into their lives — but nothing is the same.  They are left grieving in a world which functions as it always has and are left alone to mourn, a solitary process that often ends in deep feelings of isolation from what has irrevocably changed.

Sometimes grief develops into what is called “complicated grief”.  Complicated grief is associated with self-destructive tendencies and an inability to process grief.  It can be very difficult to identify complicated grief because the process of grieving is different for all of us.  How do we etablish when grief limits our sense of well-being and our ability to function? When can unhealthy grief be distinguished from a healthy grieving process? Even health care professionals who may have experience working with bereavement have trouble answering these questions.

Typically the first year of bereavement is the most difficult.  As one adjust to the loss of the loved one, an incessant array of holidays, seasons and anniversaries present themselves and can trigger anew the magnitude of the loss.  One never goes back to life with the loved one, but, instead, must establish a new “normal”. This adjustment often brings up intense emotions of resistance, anger, isolation, depression, and denial.  These emotions are appropriate as one moves through the pain of loss and must never be judged.  It is only when the grieving becomes “complicated” and self-destructive that we need to address it.  However, complicated grief is difficult to assess and must be approached with great care.

As I have worked with those who mourn, I’ve become aware that it can be very helpful for them to be around those who have similar experiences.  Bereavement and support groups can provide such support.  At times, however, there is great resistance to this support since the grieving often feel that their experience is worse than that of others and is singular in a way that others are incapable of understanding.  Often this resistance is so profound that it leaves the bereaved even more isolated.  I have seen, though, that while those grieving may exhibit resistance to those with similar experiences, they end up finding this support helpful, meaningful, and therapeutic.

While the first year of mourning is the most difficult, later in life certain triggers may remind one of the pain with almost overwhelming intensity.  Grief never really ends — one merely adapts to life anew.  The pain of grief recedes until it presents itself, at times out of nowhere, for a short period of time.  It is important to respect the adaptability and the periodic pain that memory triggers.

Death and bereavement are part of life. We need to experience them with all our feelings and let those in pain know that we support them without judgement.

Being Present with the Dying: Emotionally

Because of deep fears about death and our own mortality, it can be difficult to be authentically present with those who are dying.  When we’re not keenly present, we create an uncomfortable distance between ourselves and the person dying.  Platitudes such as “You never know, maybe you’ll get better” or “Don’t talk like that” only pull us away such that without meaning to, we limit the relationship between ourselves and those leaving us.

Having worked for two decades with those confronting serious illness and death, I have come to realize that the needs of the dying and their caregivers are never predictable.  I have learned to follow their lead in lieu of following an agenda that I deem important.  And while I make suggestions about the end of life, I have learned to respect whatever response I get.  Being fully present to those who are dying requires diligence, as it is imperative to avoid judgment.  At times I have encountered denial, which I have learned to respect while gently suggesting or informing.  At other times, I may end up sitting with someone who wants to talk or rage or sob.  In these instances, I follow their lead and validate their feelings.  It’s also important to be tuned into one’s own discomfort so as not to act on it and work it through at another time.

When working with the dying, it’s useful to ask oneself the question “Whose needs and agenda am I here for, mine or the person dying?”  This may lead to discomfort, discomfort that must gently be set aside so that we can address the needs of the dying.

We all die alone.  Until that moment, we are connected to the people around us, people we love and care about.  If, as caregivers, we allow our discomfort to impose itself and get in the way, we may lose the opportunity to be with those we care about at a time when we are most needed.

Like most people, I become frightened when I think of my own death. When I focus on it, I fear the unknown and anticipate the loss of my ego.  Fortunately, these thoughts and feelings recede during the hectic process of living my life.  But when I’ve been confronted with the death of those in my care or in my personal life, I often must deal with my own issues.  I found, however, that as I worked with patients and loved ones and learned to set aside my own fears and anxieties, that I became less afraid.

I have also found that being fully present and engaged with the dying limits the regret and guilt that so often is a part of bereavement.  By being conscious of our own fears and needs, and by setting them aside as someone experiences the end of life, we experience less of a rupture when the physical bond, our sharing of life, is broken.

Because the experience of dying is solitary, it can be overwhelmingly isolating.  We can, however, foster intimacy by empathizing and being present to whatever the dying person is experiencing or expressing, be it anger, depression, fear, denial, hope, hopelessness, acceptance, peace, etc.  When we achieve this, we can help whomever we are caring for feel less alone.

It is often difficult to avoid acting out our own fears while being fully present to the dying.  While we all die and die differently, most of us deny death in a million different ways.  Without this, we would be overwhelmed with fear and anxiety.  By being attuned to the dying and responding to their needs instead of trying to appease our own needs and feelings, we enrich the relationship with those who are leaving us.  We owe ourselves and the people in our lives an environment in which they can reach the end of their lives in as rich a way as possible.

Being Present with the Dying: Hospice and Palliative Care

Palliative care is often misunderstood – generally thought of as only appropriate for end of life care.  The purpose of palliative care is to relieve symptoms, comfortably and holistically, at any stage of illness regardless of the prognosis.  Hospice – a subject often avoided – is designed for end of life care.  Hospice provides the utmost care, concern, empathy and support.  Both programs are invaluable for the achievement of ultimate comfort – addressing the physical, emotional and spiritual facets of those in their care.

Palliative care is meant for people with serious illnesses.  It addresses symptom, stress and pain relief to achieve optimum quality of life.  Although palliative care is often thought of for the dying or for those who have forgone further treatment, it can be beneficial at any stage of illness.  Palliative care uses a holistic approach to illness and coordinates physicians, nurses, social workers, therapists and chaplains who address the physical, emotional, psychosocial and spiritual needs of those dealing with a difficult illness.  Palliative care can benefit people during any stage of an illness, be it chronic or acute.  Some palliative care programs have teams who work with patients while they are in the hospital; others take place in a clinic setting.

The notion of hospice is fraught with fear, a fear that no doubt stems from the fear of death itself, a taboo subject in American culture.  Even those who are healthy, for whom death is abstract, have difficulty broaching the subject and avoid preparations for serious or even fatal illness.  To address the subject while already traumatized by illness is even more fraught and uncomfortable.  When we enter a hospice program, we acknowledge that the end of life is approaching and curative treatment options have been exhausted. One criterion for admittance to a hospice program requires a six month prognosis of mortality from a physician.  Giving up on treatment and the possibility of a cure, and instead focusing on end of life comfort, can be very difficult to accept.

Hospice focuses on comfort care and addresses the whole person – physically, mentally, and spiritually – with teams of doctors, nurses, social workers, therapists, and chaplains.  Having worked in hospice programs for many years, I’ve seen patients and their loved ones find the experience deeply comforting.

While most of us think of hospice as a facility one goes to die, this definition is limited and exacerbates are deepest fears.  A more enlightened way of describing hospice is that of a holistic support program for significant others and for patients who have exhausted curative treatment.  While hospice programs in general disallow aggressive treatments, they encourage treatments that provide comfort, including at times chemotherapy and antibiotics.  Comfort is the paramount goal of care.  Perhaps most importantly, hospice is not limited to inpatient facilities.  Those health care professionals who are available inpatient are also available to people in their home.  These home hospice programs create the same environment of caring and commitment that is found in an inpatient setting.  In addition to providing services at home, home hospice programs provide the same support wherever the patient is settled, including in a facility such as a nursing home.  Those working in hospice programs are willing to work with any facility where they can offer support to the staff and oversee patient care, making sure the comfort and needs of the patient and their loved ones are met.  This provides greatly to the comfort of significant others who are otherwise at the mercy of the facility culture.

Hospice programs are flexible and work with the patient and their loved ones in any way they can.  They are generally covered by private insurance, Medicare and Medicaid.  People who live longer than the hospice required prognosis of six months can be discharged and reinstated as the need arises.  Hopefully the concept of hospice care will become more familiar and commonly used such that the fear and avoidance associated with hospice lessen.  This familiarity will enhance and deepen our empathy and our understanding of end of life care and, in turn, our appreciation and mindfulness of living.  I will write about the emotional aspects at the end of life in a future blog post.

The Blame Game

Blame always causes damage, either to oneself or to others.  To blame others is to defend oneself from uncomfortable feelings and to avoid taking responsibility for one’s actions; blaming oneself reinforces one’s lack of self worth.  Blame breeds resentment and prevents resolution of conflict.

Blame is a defensive response to pain – instead of allowing us to express hurt, it prompts us to act out and attack.  It is always tinged with anger and produces no result.  Blame alienates and pushes away.  Over time, blame destroys relationships.

In my work with couples I have seen blame exacerbate the rupture that brought the couple into treatment in the first place.  Unless both people in a relationship take responsibility in a conflict, they will express their feelings through blame.  This prevents understanding and enflames problems in communication.

Even if the blamed person takes responsibility for her/his partner’s hurt and apologizes, it may seem like the problem is being addressed when, in fact, resentment and guilt are simply buried and end up being acted out in other areas of the relationship.  While blame and subsequent apology may create the impression that the rupture has been dealt with, it in fact has simply been camouflaged until it presents itself in other problematic areas that the couple may or may not be dealing with.  While not always apparent, in any conflict there is shared responsibility in preventing understanding and healing.

Suspicion or discovery of infidelity is one of the most volatile areas that come between couples, leaving the psyche gripped with feelings of insecurity and rejection.  What drives a partner to explode in rage when experiencing the pain of betrayal?  What role does each partner play in a rupture precipitated by infidelity, either real or imagined?  And does responding with rage when infidelity strikes address the problem?

When both people in a couple discover their own responsibility in a rupture, including infidelity, it does not illustrate “blaming the victim”.  In every dyad, there is action and reaction, and I have found that even in the most blatant breaking of trust, the injured party can look at her/his contribution to the breakdown in the relationship.  If blame is the only response to being hurt, after time the blamed member of the couple will start to resent her/his partner.

A couple who had been together for 11 years came to see me after discovery of a workplace flirtation.  The wife had found a romantic-tinged text from her husband’s co-worker and confronted her husband.  He admitted the flirtation had gotten out of hand and, while confused, he said that he did not want to leave the marriage, loved his wife and the life that they had, and wanted to work on the marriage.  The wife was devastated and enraged.  She acted out her pain and devastation with attack and accusation and, as she attacked, her anger only deepened.  As we worked together, many past problems in the relationship came up that had never been addressed.  But the blame and attack from the wife continued unabated until the husband was distraught and resentful.  I tried to focus on the wife’s pain, the husband’s confusion and on working on the past unaddressed problems that contributed to the flirtation and fantasy.  After a couple of months, the wife’s constant blame and accusation and the husband’s growing resentment ruptured the relationship in a more substantial way than the initial out-of-hand flirtation.  The wife refused to look at her role in the ruptures and continued to blame her husband in total for the problems in the relationship.  The conflict deepened and healing was elusive.

A married man I have worked with for many years struggles with tremendous guilt and self-recrimination over his pornography addiction and for his occasional hiring of escorts.  Although his addiction has been a life-long struggle, during his marriage and until recently he has refrained from pornography and sexually acting out.  During his 10 years of marriage, he has had two children.  For a long period of time he has felt neglected by his wife, who has been focusing on the children and has neglected intimacy with him.  When he brings up the lack of sex and suggests working on it, she avoids the topic and lets it drop.  Lately my patient has succumbed to his porn addiction and is worried that he may act out further.  My patient is filled with self-blame about his addiction.  He thinks of his addiction as a weakness and moral failing.  While he has enormous empathy for his wife, and understands why the intimacy has left their relationship, he has no empathy for himself.  Instead of confronting the issue of sex with his wife and not letting the subject drop when he brings it up, he blames himself for needing to fulfill his need for sex though porn.  Because I fear that his self-blame will further isolate him and may develop into resentment towards his wife, I encourage him to persist in bringing up the subject to his wife and to develop empathy towards his addiction disease.

When one is hurt and responds with blame, she/he is unconsciously motivated to hurt the other.  That way, she/he is not suffering alone.  This only further alienates the person causing the pain and breeds resentment and isolation.  To express hurt brings the other towards the one hurting; blame pushes the other away.

Feelings, Thoughts and Behavior

Feelings are internal emotions that have both conscious and unconscious origins. They are neither right nor wrong, good or bad, necessary or unnecessary. We have no control over how and when they present themselves. We may try vainly to suppress them.

We do, however, have control over how and when we express emotion.  Some emotions – jealousy and anger come to mind – are commonly thought of as bad or undesirable. This judging of the feelings exacerbates their painful aspects and can lead to self-recrimination.  To deal with feelings and to be able to choose when to act upon them, it’s essential to respect them and empathize with them.

I often hear patients filled with self-loathing because they judge their feelings as useless or unhealthy.  When working with such patients, I emphasize the value of allowing feelings to simply be, without judgment or editorializing whether they have a point, are unfair or invalid, or should not be felt.  As we explore how to empathize with feelings – especially unwanted ones – we learn how, when, and to whom to express them.

Because shame, embarrassment and inhibition often interfere with the expression of feelings in therapy, it’s essential that the therapist provide a safe and nonjudgmental space to facilitate the necessary freedom that allows the feelings to emerge.

I encourage my patients to discuss their darkest, most hidden and shameful feelings even though as an analyst and human being, such feelings can run counter to my passionate commitment to remain nonjudgmental.  In these situation, I separate my patients’ feelings from how they affect the patients’ behavior.  I help the patient wrestle with how these feelings developed and consequently how they affect functioning and happiness.

Most difficult for patients to express are negative feelings about me, their therapist, whom they often perceive as an authority figure.  Whether these feelings stem from a negative transference or a disagreement with an interpretation, I encourage my patients to talk about these feelings and I help them work through them, especially if they are negative.  Most typically, patients (and people in general) don’t like to express negative feelings to the person concerned because they are afraid of damaging the relationship.  By providing a safe environment and with gentle encouragement, I allow patients to discover that they can express negative feelings about me and have our relationship survive intact.  If all goes well, patients eventually learn to empathize with whatever they are feeling, be it negative or positive.

I once had a patient whom I only saw for a brief time but whose actions illuminated how acting out feelings can be less threatening than expressing them with words.  After only a handful of sessions, the patient started asking personal questions about me, his anger only rising as I set boundaries and refrained from most self-disclosure.  As his anger increased, the questions about me became more intimate and hostile.  I worked on exploring the feelings underlying his insistence, but to no avail.  Finally, in what was to be our last session, the patient became so enraged that he stood up and threw the check for the session in my face and stormed out of the office.  One can only wonder what narcissistic wounds made it easier for him to act on his rage rather than express to me the underlying feelings that motivated such intense anger.

Because people so often think of negative feelings as destructive, they often find it easier to express them through action rather than words, often unconsciously.  While I tell my patients that I want to hear everything – the bad, the good, and the ugly – such direct permission is rarely enough to break through the fear.  Only after a prolonged period, in the therapist’s safe and holding environment, do patients feel comfortable enough to bring up upsetting or threatening feelings into the therapy space.  At this point, the treatment can deepen and progress towards understanding and change.