Right to Mourn

A Mourner's Bill of Rights

Right to Mourn

Mourner's Bill of Rights

Many years ago our grief expert and Thanatologist, Stephanie D. Rogers, came across a valuable “Mourner’s Bill of Rights” written by Alan D. Wolfelt, Ph.D., CT. Although perhaps well-intentioned, it’s not uncommon for others to do or say something that doesn’t help at all. Here’s what you should know…


The Mourner’s Bill of Rights

by Alan D. Wolfelt, Ph.D., CT

 

Though you should reach out to others as you do the work of mourning, you should not feel obligated to accept the unhelpful responses you may receive from some people.

 

You are the one who is grieving, and as such, you have certain “rights” no one should try to take away from you. The following list is intended both to empower you to heal and to decide how others can and cannot help. This is not to discourage you from reaching out to others for help, but rather to assist you in distinguishing useful responses from hurtful ones.

  1. You have the right to experience your own unique grief.  No one else will grieve in exactly the same way as you do.  Don’t allow others to tell you what you should or should not be feeling.
  2. You have the right to talk about your grief.  Talking about your grief will help you heal.  Seek out others who will allow you to talk as much as you want, as often as you want, about your grief.
  3. You have the right to feel a multitude of emotions.  Confusion, disorientation, fear, guilt, and relief are just a few of the emotions you might feel as part of your grief journey.  Know that there is no such thing as a “wrong” emotion.  Accept all your feelings and find listeners who will do the same.
  4. You have a right to be tolerant of your physical and emotional limits.  Your feelings of loss and sadness will probably leave you feeling fatigued.  Respect what your body and mind are telling you.  Get daily rest.  Eat balanced meals.  Don’t allow others to push you to what you don’t feel ready for.
  5. You have the right to experience grief “bursts”.  Sometimes, out of nowhere, a powerful surge of grief may over come you.  This can be frightening, but is normal and natural.  Find someone who understands and will let you talk it out.
  6. You have the right to make use of ritual.  The funeral ritual provides you with the support of caring people.  More important, it supportively sees you off on your painful but necessary grief journey.  Later rituals, such as lighting a candle for the person who died, can also be healing.  If others tell you rituals such as these are silly or unnecessary or morbid, don’t listen to them.
  7. You have the right to embrace your spirituality.  If faith is a part of your life, express it in ways that seem appropriate to you.  Allow yourself to be around people who understand and support your religious beliefs – including any need you may feel to question those beliefs.  If you feel angry at God, find someone to talk with who won’t be critical of your feelings of hurt and abandonment.
  8. You have the right to search for meaning.  You may find yourself asking “Why did he or she die?”  Why now?”  Some of your questions may have answers, but some may not.  Watch out for the clichéd responses some people may give you.  Comments like “It was God’s will” or “think what you have to be thankful for” are not helpful and you do not have to accept them.
  9. You have a right to treasure your memories.  Memories are one of the best legacies that exist after the death of a loved one.  You will always remember.  Instead of ignoring memories, think of creative ways to embrace them.
  10. You have the right to move toward your grief and heal.  Reconciling your grief will not happen quickly.  Remember, grief is a process, not an event.  Be patient and tolerant with yourself and avoid people who are impatient and intolerant with you.  Neither you nor those around you must forget that the death of someone loved changes your life forever.

 

Don’t be afraid to share this Bill of Rights with friends and family members – especially those who may have trouble understanding what you’re experiencing.

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For more information on Dr. Wolfelt visit [centerforloss.com](https://www.centerforloss.com “centerforloss.com”).


Understanding Child Grief by age group

A Child's Concept of Death

Understanding Child Grief by age group

A Child's Concept of Death

Children are often referred to as “forgotten grievers”; sadly, this is all too often the case.  While a child’s grief should never be overlooked or undervalued, it is important to understand that it is different from an adult’s experience of grief.  Children grieve according to where they are developmentally on physical, mental, and emotional levels.  Consequently, it is important to speak to them in age appropriate language that takes into consideration their developmental level of understanding.  It is important to tell children the truth about death, however, it is equally important to remember that the words you use to speak that truth to a four year old are different than those you use to speak to a seventeen year old.  

Following are some useful developmental guidelines to keep in mind when helping grieving children.  Please bear in mind that these are only generalizations – each child is an individual and as such has his own personal experience of grief – however, these guidelines may help adults not forget the smallest of grievers.

And remember that at any age, a unique characteristic of children is their insatiable appetite for answers to their questions.  Children are especially interested in why death occurs and why it can’t be “fixed”.

Death Concepts of Children & Teens by Age Group


Infancy to Toddler Years

There is no concept of death

The child reacts to the emotions and feelings of the parents

The grief of others permeates their environment.

 

Reactions

Crying, Clinging

Regurgitation or vomiting

Regression in toilet habits

 

Interventions

Confront the behavior with professional help

Keep the routine as normal as possible

Physical reassurance through holding and talking to the child

From Three to Five

Not capable of abstract thinking

Children this age live mostly in the present – past and future are abstract concepts

They deny death as a normal and final process

They equate death with sleep.  In time the person will awaken

Death is measured in degrees – “kind of dead” to “real dead”

They begin to form a vague understanding of what death is, but they believe it only happens to other people

 

Reactions

May show little concern when told of a death

May regress to infantile behavior

Fears separation from significant others

Asks repeated questions about the person who died

 

Interventions

State the fact of death.  Do not use clichés

Keep explanations short and simple

Respond to their security needs

From Six to Nine

They have a clearer understanding of death

Comprehend that they too, can die

Begin to fear death; often see it as punishment

Realize death is final and people they love can die

 

Reactions

High anxiety – especially for the health & safety of remaining parent

Less willing to talk about death

Grief reactions ebb and flow

 

Interventions

Respond compassionately

Refrain from using clichés

Be responsive to their needs

Reassurance

Use art and stories to aid their expression of grief

From Ten to Twelve

View death not only as final but inevitable

Curious about the biological aspects of death

To hide their fear, they often joke about death

Not unusual for them to feel some responsibility for the death

 

Reactions

Separation anxiety and fear (temporary)

May lose some manual skills because they lack concentration (especially true in males)

Daydreaming; at school, grades may fall

This is the “fix it” age

Tend to emotionally distance themselves from adults

 

Interventions

Give compassionate answers to their questions.  Don’t be appalled or frustrated

Give them permission to vent their feelings

Listen attentively

Give an honest explanation of the death

Teenage Years

More adult processes are evident

They fluctuate between acknowledging death as final and wanting to believe it is just a rumor

They have feelings of immortality while at the same time realizing that life is fragile

To defy death, they engage in risk taking behaviour

 

Reactions

Assume the adult role, especially with younger siblings

Preoccupation with death

May attempt suicide as a gesture

Often show anger and aggression

 

Interventions

Encourage communication

Involve a trusted friend

Engage in loving confrontation when needed


Further suggested outside reading: ‘Helping Children Cope With Grief‘ by Alan D. Wolfelt, Ph.D. (source: centerforloss.com)


Accepting death

First, acceptance.

Accepting death

Accepting the Death of Your Loved One

Speaking of accepting the death of a loved one elicits varied responses.  There is the eye-roll that says, “Well, that’s obvious”.  There are tears.  There is anger.  Most often there is refusal.  “I don’t like it.  I don’t want to accept it.  I won’t accept it.”

What does “accepting death” mean?

To accept is not to like.

 

To accept is not to welcome.

 

To accept is not to approve.

 

To accept is just that:  To Accept.

 

Today, try taking yourself to a safe and quiet place, in your home or out in nature, and saying out loud, “_________ (your loved one’s name) is dead.”  

 

Say it as objectively as possible, as you would say, “The sky is blue.”  Allow yourself to observe.  Observe how the words feel on your tongue, how they sound in your ear. Observe what images come to mind, observe how your chest feels, how your breathing changes. Observe without judgement — no “right”, no “wrong”.  Simply observe.  

 

At first, it may be difficult to use the word “dead”, but don’t substitute it with something like “passed away” or “lost” — those things are simply not true.  Your loved one is not lost.  He has not passed away.  Her body has died.  His form has ceased to live.  The acceptance of this tangible fact is the first, vital step in building an on-going relationship with them.

 

It is also a challenging and painful step, so be gentle with yourself.  And remember, you are not alone.


Further suggested TrueSolace reading: Common Grief Experiences

Further suggested outside reading: ‘How to Accept the Death of a Loved One‘ by Mitch Reid with Livestrong.com


Lesson on grief is in two parts

Lesson on Grief in Two Parts: Loss and Rebirth

Lesson on grief is in two parts

“Grief is in two parts. The first is loss. The second is the remaking of life.”

-Anne Rope

And the second never really ends.

We are forever re-creating ourselves.  This happens with or without the intervention of death.  Each day, we are re-born, but most often in small, easily unnoticed ways.  Then comes the inevitable experience we all dread:  the death of a loved one.  In that moment, we are hurled into a new world, a world in which everything is familiar, but nothing is the same.  A world we are supposed to know but no longer recognize. 

With your loved one’s death, you have been re-born — and birth is never easy.  Take your time. Remind yourself to breathe.  Talk to your dead loved one.  Call them by name.  Ask them to help you remake your life.  They will.  And you will carry them with you into it.


Further suggested TrueSolace reading: A Healthy Attitude When Grieving

Further suggested outside reading: When People Say, ‘You’ve Changed’ After a Loss by John Polo at themighty.com


Following the death of a loved one even breathing can seem impossible

Some days it's okay if all you did was breathe.

Following the death of a loved one even breathing can seem impossible.

Following the death of a loved one even breathing can seem impossible

Following the death of a loved one, there will be days when even breathing will seem impossible.  Days when tears and snot and pain and panic make breathing a greater challenge than you could have imagined.

You’ll breathe anyway.

 

Somehow you will.

 

And when you do, that will be enough.  One breath will lead to another and another and another, and it will be enough.

 

So, stop right now — whatever you are doing, wherever you are — and breathe:

  • In through your nose (or through your mouth, if your nose is too clogged from crying) for a slow count of 4, all the way down to your belly.
  • Hold it for another slow count of 4.
  • Release it — controlled — for another slow count of 4.
  • Hold the end of the out breath for a final count of 4.
  • Breathe normally.
  • Repeat as needed.

Just breathe.  It’s enough.  It’s everything.


Suggested TrueSolace reading: Grief Tips: Help for Those Who Mourn

Suggested outside reading: Take Deep Breaths When You Lose a Loved One  by NataliaVolz from PassingThroughGrief.com.

Allowing yourself to be sad is not a bad thing.

Sad isn't bad.

Being "Sad" Isn't Always "Bad".

Allowing yourself to be sad is not a bad thing.

Allowing yourself to be sad is not a bad thing. 

 

We judge.  As a society, as individuals.  That’s what we do.  We may think we don’t, we may try hard not to, but we do.  We judge.

And we reserve some of our harshest judgements for anyone, anything, that isn’t “positive” or “upbeat” or “happy”, or, at the very least, “holding it all together”.

No emotion is “bad”.  It just Is.  And no emotion can exist without its opposite.  How could it?  How would we know “happy” if there was no “sad” with which to compare it?

There is no light without darkness.  No summer bounty without winter’s fallow.  

Contrasts.  Two sides of the same coin.  Paradox.

The Universe loves paradox.

When did we forget that, I wonder?   Because it wasn’t always that so.  There was a time, just since our country was born in fact, in which sadness, or “melancholy”, as it was most often called then, was not only accepted but embraced, even celebrated, as a painful but necessary time in life.  A time that often resulted in great works of art, in laudable achievements, in lasting legacies.

No, sad isn’t bad.

Sad is just sad.   

So, let yourself be sad.  Don’t beat yourself up for it.  And don’t allow others to scold or belittle or busy you out of your sadness.  

You’re sad – be sad.  So that when you’re happy, you can fully be that too.


Further suggested TrueSolace reading: A Healthy Attitude When Grieving
Further suggested outside reading: The 8 Myths About Emotions That Are Holding Us Back by Amy Morin from Forbes.com.


We grieve in direct proportion to how much we love

We grieve in direct proportion to how much we love.

We grieve in direct proportion to how much we love

We grieve in direct proportion to how much we love.

While there is no way to completely predict what our grief experience will be, there is one fairly certain barometer:  the love we have for the one who died.  The love we have — present tense — for that love did not die with their body.

 

“We grieve in direct proportion to how much we have loved,” I once told a young woman.

 

“I love Big,” she answered quietly.   “So, I guess that means I’ll grieve Big.”

 

There was resignation in her voice, and, of course, sadness.  But, there was also something else — a sense of relief, the relief that comes from understanding.  The deep breath we take when something becomes clear to us.

 

And there was pride.  Pride in her Big Love.  Pride in her Big Grief.  As there should be.

 

Your grief is a reflection of your love.  It is as simple and as complicated as that.  


Further suggested reading: Grief May Feel Lonely, But Should Never Be Alone by Carla Cheatham, MA, Mdiv, PhD, TRT

Suggested TrueSolace thought: Helen Keller quote


How to help a dying loved one and provide a good death experience

What Do the Dying Want?

How to help a dying loved one and provide a good death experience

What Do the Dying Want?

How to Help a Dying Loved One and Provide a Good Death Experience

by: Stephanie D. Rogers, GCCA-GT, CT*

 

The Great Separation – that of Death from Life – began for us in the United States with the Civil War.

Before the Civil War, death was a natural and normal part of life.  A sad sundering, yes, but as normal and natural as birth.  People generally died “A Good Death” in the same house in which they had been born, sometimes, even, in the same bed. They were surrounded by loved ones, prayed over by clergy, speaking and hearing final words of acceptance, solace and peace before being laid forever next to kin in a family plot of land.  

The Civil War changed all that.

Practical difficulties of burial

Young men who had literally never left the farms of Iowa or Virginia were carried hundreds of miles away to die on battlefields and in makeshift hospitals, far from everything and everyone they had ever known. Lying alone with the dead or dying piled all around them, these young men did their best to recreate the circumstances of “A Good Death”.  Daguerreotype images replaced beloved wives and mothers, fellow soldiers stood in for fathers and brothers, bibles replaced preachers, and, whenever possible, letters scrawled on blood-stained pages made the final goodbyes that were so important in the last moments of their lives.

Back home, families were faced with the reality of never knowing where, when, or even if their loved ones had died. The return of their beloved bodies an equally uncertain possibility.  The emerging business of “undertaking”, with its ghoulish means of preserving bodies, was an extravagance only the very wealthy could afford.  It was also the introduction of turning over the very personal, family-held rituals of preparing the body for internment to others outside the home, to strangers who had to be paid for their services.

With the Civil War, American dying and death left the home and in many ways never returned. Death was taking place more and more often in clinical surroundings, overseen by those with a monetary interest in caring for the dying, and the idea of “A Good Death” was forever changed.

Or was it?

When asked today to define “A Good Death”, the overwhelming majority of people list the following things as most important:

  • Comfort/Relief From Pain

Both comfort and pain are subjective.  When determining pain levels in hospice, we ask patients not just what their level of pain is – “On a scale of 1 to 10 with 10 being highest, where is your pain?” – but also what level of pain is acceptable to them – “You say your pain is at a 4 – is that an acceptable level for you?”  This is important because my 4 may be your 8, your 2 may be my 10.  In the same manner, the comfort I receive from being clear-headed may be great enough to forego a higher dose of pain relieving medication while it may not be for you.  It is important that we ask the dying what “comfortable” and “pain-free” means to them rather than just assuming we already know.  As caregivers, this is especially important as we may be called upon to speak for the dying when they can no longer speak for themselves.  

  • Truthful Communication

Not too many years ago, it was standard medical practice to lie to patients about their physical prognosis.  “They don’t need to be burdened” was the reasoning behind keeping a terminal diagnosis from a patient.  Unfortunately, this is still sometimes the case.  More often than might be expected, we in hospice are instructed by family members, “Don’t tell Dad you’re with hospice,”  “Mom can’t know we’re talking about hospice,” as though their loved ones don’t realize their own terminal status.  

We are dying from the moment we are born and those who are living with life limiting illness are more aware of that truth than most.  I have never spoken with a dying person who said, “I wish they had been less honest with me,” about anything and certainly never about their own physical prognosis. What I have been told is, “I wish my son had told me the truth about…,”  “I wish my wife had been more honest with me about…”  

Even the hardest truths can be delivered with respect and compassion.  The dying not only want that, they need and deserve it.

  • The Opportunity to “Settle” Things

I’ve come to believe that there is work involved in protracted dying.  The weeks, months, and sometimes years that a person lives with terminal illness are at time full of thought and reflection, “Life Review”, it’s often called, a period of time in which the patient looks back on his life and often wonders, “What if…?”  While it is impossible to change the past, impossible to take the road not taken, it is possible for to come to terms with what we lost, what we turned away from, what – and who – turned away from us. This is one of the most important tasks of dying, one of the most universally recognized components of “A Good Death”.

While the majority of this work is internal and must be done by the patient herself, there are ways in which we as caregivers and loved ones can help.  Is there an incarcerated family member who the patient would like to see before they die?  Is there an estranged sister or an ex-partner with whom the patient would like to speak while they are still able?  The psychosocial members of your hospice team may be able to help facilitate these things and will also be able to help you and the patient explore other ways to resolve conflict if seeing or speaking to those involved is not possible.  

Helping your loved one to write a letter or email – regardless of whether or not it is actually sent – can be useful, as can helping them to express their feelings in other ways.  Painting, drawing, and journaling, going through old photographs and memorabilia, audio or video recordings of messages and stories can all help your loved one find some resolution and healing at the end of their life. Have the courage to ask and to listen, risk the pain of getting involved, and you may find you experience an unexpected level of closeness with your loved one as she works to “settle” things. This is a level of intimacy that will carry you through their death and beyond.

  • Clean/Quiet/Calm Surroundings

While it is important that the terminally ill not feel isolated, it is equally important that their environment be clean, calm, and quiet.  This is especially true in the last days of life.  In those last days and hours, your loved one will undergo many changes, physically, mentally, spiritually, and emotionally.  As a result, circumstances, things, and even people, who gave them comfort may do just the opposite.  The welcome jump on their bed of a beloved grandchild may be physically painful to them as they come closer to the end of life.  The music that soothed them may now be harsh and jarring.  The television they needed in order to go to sleep may now keep them awake or cause bad dreams.  The smell of cooking or flowers or candles that made them smile may now nauseate them.  

They may be as surprised by these changes as you and be unwilling or afraid to mention them to you. As the end of life draws closer, they may be unable to communicate their discomfort to you.  Be aware of noise – children, pets, music, televisions, phones, the sound of raised voices whether in anger or delight.  Bright lights, strong scents, all may be distressful to the dying.  When in doubt, remember: less is more.  Softer, dimmer, quieter, calmer, is always a safe bet.

  • Kindness and Compassion

In some cases, a person’s illness and death may cause very tangible difficulties for those providing their care and the ones they leave behind. The imminent death of a young father/mother, the primary caregiver of an elder, or those who have no blood family to help them-  all these situations can lead to the dying being treated with less than kindness.  

We are all human and care-giving is one of the most stressful tasks any of us will ever face.  Allow yourself to know and accept this.  Allow yourself to be human.  When you feel your temper rising – and it will – rather than trying to ignore it, allow yourself to recognize what is happening and then remove yourself from the situation.  Stepping into another room to take three deep breaths, taking a five minute walk outside, going to brush your teeth or wash your hands or return a text message can make all the difference.   

Knowing when to ask for help – and then accepting it – will enable you to be the kind, compassionate, and loving caregiver your loved one deserves and you want to be.  With these lessons, “A Good Death” becomes a reality for all.

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*’What Do the Dying Want,’ was written by our own Stephanie D. Rogersa certified Grief Counselor and Thanatologist with a specialization in Child and Adolescent Grief. Stephanie became a hospice professional in 2004 after volunteering at hospices for decades. She holds two bachelor degrees, one in Grief Counseling and Bereavement Education. She has served as a Spiritual Care Coordinator and is a regular presenter at professional hospice and palliative care organizations nation-wide. 


Debunking Myths of Hospice

Myths About Hospice

Debunking Myths of Hospice

 Debunking Myths of Hospice

  • Myth #1: Hospice is a place.

Hospice care takes place wherever the need exists — usually the patient’s home. About 70 percent of hospice care takes place where the patient lives.

  • Myth # 2: Hospice is only for people with cancer.

More than one-half of hospice patients nation-wide have diagnoses other than cancer. In urban areas, hospices serve a large number of HIV/AIDS patients. Increasingly, hospices are also serving families coping with the end-stages of chronic diseases, like emphysema, Alzheimer’s, cardiovascular, and neuromuscular diseases.

  • Myth #3: Hospice is only for old people.

Although the majority of hospice patients are older, hospices serve patients of all ages. Many hospices offer clinical staff with expertise in pediatric hospice care. Almost 20% of hospice patients are under 65 years of age.

  • Myth #4: Hospice is only for dying people.

As a family-centered concept of care, hospice focuses as much on the grieving family as on the dying patient. Most hospices make their grief services available to the community at large, serving schools, churches and the workplace.

  • Myth #5: Hospice can only help when family members are available to provide care.

Recognizing that terminally ill people may live alone, or with family members unable to provide care, many hospices coordinate community resources to make home care possible. Or they help to find an alternative location where the patient can safely receive care.

  • Myth #6: Hospice is for people who don’t need a high level of care.

Hospice is serious medicine. Most hospices are Medicare-certified, requiring that they employ experienced medical and nursing personnel with skills in symptom control. Hospices offer state-of-the-art palliative care, using advanced technologies to prevent or alleviate distressing symptoms.

  • Myth #7: Hospice is only for people who can accept death.

While those affected by terminal illness struggle to come to terms with death, hospices gently help them find their way at their own speed. Many hospices welcome inquiries from families who are unsure about their needs and preferences. Hospice staff are readily available to discuss all options and to facilitate family decisions.

  • Myth # 8: Hospice care is expensive.

Most people who use hospice are over 65 and are entitled to the Medicare Hospice Benefit. This benefit covers virtually all hospice services and requires little, if any, out-of-pocket costs. This means that there are no financial burdens incurred by the family, in sharp contrast to the huge financial expenses at the end of life which may be incurred when hospice is not used.

  • Myth # 9: Hospice is not covered by managed care.

While managed care organizations (MCOs) are not required to include hospice coverage, Medicare beneficiaries can use their Medicare hospice benefit anytime, anywhere they choose. They are not locked into the end-of-life services offered or not offered by the MCOs. On the other hand, those under 65 are confined to the MCOs services, but most provide at least some coverage for hospice.

  • Myth # 10: Hospice is for when there is no hope.

Finally, when death is in sight, there are two options: submit without hope or live life as fully as ever until the end. The gift of hospice is its capacity to help families see how much can be shared at the end of life through personal and spiritual connections often left behind. It is no wonder that many family members can look back upon their hospice experience with gratitude, and with the knowledge that everything possible was done towards a peaceful death.

TrueSolace thanks: American Hospice Foundation (www.americanhospice.org) for CreativeCommons use of this material.

https://americanhospice.org/learning-about-hospice/debunking-the-myths-of-hospice/ accessed 11.7.17


interacting with the dying

Interacting with the Dying

interacting with the dying

Interacting with the Dying

Before we can communicate effectively with a loved one who is dying, it is important that we understand our own thoughts and feelings about death and dying.  If we are afraid or uncomfortable considering the end of our own life, this will come through in how we deal with our loved one  – regardless of how well we may think we hide our feelings.  It is best to face these feelings, to find out just how we do feel about death and dying, before we begin to talk about it with someone who is facing the end of their life.

Following are some suggestions and considerations when interacting with the dying.

Facing Your Own Fears

The thought of dying can evoke fears, including those regarding:

    • Personal mortality
    • Mortality of other loved ones
    • Guilt
    • Uncertainty

Rather than acting as an impediment to communication, these fears may actually provide common ground between you and your loved one.  Be aware of your own fears, but avoid interjecting them into the conversation. Utilizing the three main components of “Active Listening” can help keep the focus on your loved one:

  • Remove all distractions/Be attentive
    We all know how frustrating it is to try to be heard above the noise of a television or seen behind someone’s phone.  Imagine how much worse this frustration is for someone who is especially aware of how limited their time for communication may be; for someone whose illness drains them of stamina and energy.  Put down your phone, turn off the television, have someone else take care of the kids or the pets, so that you can be completely and totally present with your loved one.
  • Listen to the speaker’s signs and sounds
    Since we communicate with more than our voice, listening should be done with more than just our ears.  This is especially true when communicating with the terminally ill or dying.  Be aware of body language and facial expression.  A sudden head drop, a change in breathing, the clench of a jaw or a fist, closing of eyes, turning away – all these are silent forms of communication that can speak much louder than words.
  • Double check what you think you have understood
    Be a patient listener. Those who are compromised by illness may need extra time to come up with the right words.  Disease progression may rob them of the ability to communicate as they always have before.  Avoid the tendency, however well-intentioned, to finish your loved one’s sentences for them.  And above all, never assume.  Avoid saying, “I know what you mean.” Chances are you don’t and even if you do, jumping to a conclusion robs you both of the opportunities of true communication.  Be open to correction.  Even the most attentive listeners sometimes misunderstand.  Use phrases like, “What I’m hearing is …..”  and “Am I correct when I say that you feel/think/need/want…”, then L I S T E N to your loved one’s responses, verbal and non-verbal.

Many people at the end of their life report feeling isolated and alone. 

In some ways, this is a normal part of the dying process – a natural separation, both conscious and sub-conscious, of the terminally ill person from the healthy world and life around him.  While it is important to remain sensitive to and respectful of this process, it is equally important to be sure that loved ones at the end of life are not avoided by family and friends who may be fearful or uncomfortable in their presence. This is especially true of certain diseases such as HIV/AIDS or alcohol related Cirrhosis.

To that end, your hospice team may suggest placing the patient’s bed in a more central location than a separate bedroom.  Someone whose illness confines them to bed can still be an active part of family life if their bed is located in a living room or family room. This is especially important when there are children in the home.  The ability to do homework in the same room as a sick parent or grandparent can be beneficial to both the child and the adult.

As the disease progresses and the patient begins the active dying process, they may need a quieter, less centrally located environment.  Again, your hospice team will be able to help you recognize the transition stages and how to best keep your loved one a viable part of family life for as long as is comfortable.

Bridging the Communication Gap  — General Suggestions

  • Let your loved one know if you are feeling fearful or uncomfortable, etc.
    It is possible to do this without turning the focus of the conversation away from your loved one or making them feel they need to console you.  Simply saying something like, “Listening to you makes me aware of some of my own fears surrounding __________ (whatever the subject is).  Thank you for giving me the chance to think about these things,” can validate what both of you are feeling without cutting off communication.
  • Ask what your loved one needs or expects from you at this time.
    Again, never assume. Even a partner of fifty years cannot know for certain what a dying spouse needs or wants. Asking can lead to important and meaningful conversations that otherwise might not happen.
  • Be honest about what you can offer/do and about what you are/are not comfortable with.
    Don’t set yourself up for failure and your loved one for disappointment by offering to do something beyond your ability. Better to gently say, “No”, up front to your Aunt’s request to house her six cats despite your allergy to them than to force everyone to deal with the consequences later.
  • Never make a promise you cannot keep – regardless of how much you may want to.
    Emotions run high for both patient and loved ones at the end of life.  Before you make a promise to your dying loved one, be sure to consult your head as well as your heart.
  • Allow your loved one to set the pace of the conversation.
    This pace may not always be the same.  A subject she talked about in depth on Tuesday may be taboo on Wednesday.  Avoid confronting them with such inconsistencies.  Instead, remember that they are working through many things now, both internally and externally, and the pace of this process is neither steady nor predictable.

Interacting with a dying family member or friend can be unsettling and challenging.  It can also be rewarding and enlightening.  If we remember in all our communication to be patient, be honest, and, above all, be loving, the time spent with a loved one at the end of life can be the greatest of gifts for us all.