From: The End of Life Companion: Touchstones For Those Who Love Someone Who is Dying,  Greg Yoder,  2013The_Books.htmlThe_Books.htmlshapeimage_1_link_0shapeimage_1_link_1

      If you are reading this, someone you love or care about, may be approaching the end of his or her life. Perhaps they are even navigating their final days. At times, you may feel frightened and lost. You likely are struggling off and on with the reality of what you and your loved ones are facing. You may feel tired to the core, full of emotions and uncertainty.

    Many years ago I was preparing a talk for a group of oncology nurses on the topic of “Self Care and Companioning.” I felt a tug on my sleeve and my youngest daughter Hannah asked me what I was doing.  As I tried to explain to her how caring for sick people sometimes leaves us feeling sad, I decided to solicit a five year old’s perspective.

     “Hey Sweet Pea, why do you think we have tears?” 

    “Well, dad,” she said, “tears are the way you show people you’re sad so they can give you kisses and hugs.”

     The simple wisdom of a five year old is sometimes the best guide. The words that follow are synthesized bits of wisdom donated by the many families I’ve companioned in hospice over the past twenty years. They are meant to wrap arms of support around you—kisses and hugs, if you will.

    It may help you to remember a grieving process begins the moment an individual is diagnosed with a terminal condition. It affects the person diagnosed, their family, friends and caregivers. Though the reality of their condition may seem illusive at first, everyone gradually begins to experience the emotions of the last goodbye. 

Grieving Versus Mourning

        It is common to hear the terms grieving and mourning used interchangeably. However, we need to recognize an important difference between these labels. Grief is what we experience on the inside when facing a loss. It includes our thoughts, feelings and physical sensations. Mourning is the outward expression of our grief. Words, usually in the form of telling your story, tears, actions and activities that express outwardly what we feel inwardly, all represent examples of mourning. Mourning is “grief gone public.” We grieve inwardly, we mourn outwardly.

         Both are necessary for healing to take place. Internal feelings (grief) need to be validated and made welcome. We need permission, support and regular opportunities to mourn or give outward expression of our inner grief. For this, we need accepting, nonjudgmental listeners.

   Do you remember what it was like to first learn of your loved one’s terminal prognosis? As families try to absorb the reality of this information, they try their best to maintain normalcy while dealing with changing health conditions. You are likely going through your version of that.

    Conversation about end of life experiences often includes language such as “good-bad, successful-unsuccessful or finished-unfinished.” These kinds of references risk implying judgment as though there is a correct and incorrect way for dying to unfold. For example, conventional public wisdom, reinforced by volumes of literature, implies that a good death is one which include scenarios with involved supportive families, finished personal business, reconciled relationships, letting go of worldly connections and finding spiritual peace. 

    While we all might agree these are outcomes we hope for, the truth is, in many end of life stories those ideal conditions do not exist. This sometimes leaves families feeling their loved one’s death was lacking in some way, at least according to “common knowledge” and what much of the literature would suggest.

    Companioning the dying has taught me to be far more interested in what represents a meaningful end of life experience rather than judging outcomes with “good-bad” thinking. We cannot measure the value of an end of life experience based on what gets finished or not, reconciled or not, or whether distress is present or not. As a hospice counselor, I regularly support bereaved family members whose grief is complicated by believing their loved one’s death did not measure up to the “good death” criteria of others.

      Divine Momentum And The Search For Meaning

    All people facing the end of life are under the influence of their entire life history. This, of course includes family and cultural conditioning, losses, traumas, joys, spiritual values, foibles and the personality they were born with to name a few. The playing out of all this influence generates a kind of Divine Momentum that carries each dying person to their end and beyond. Life is often complicated and demands much from us even in the dying process. Our patient continues this lifework, sometimes skillfully, sometimes clumsily. So, it stands to reason, the manner and style in which one dies will mirror their life story.

    I often think of Frank Sinatra singing “I Did It My Way.” Sometimes family members and even healthcare workers volunteer strong perspectives about how an end of life experience should look or sound. Even if you have had similar caregiving responsibilities with others, which may certainly be useful to you, please remember your loved one is the expert in their dying. Every end of life event is a one-of-a-kind story. They will show you their version of Frank’s song. To companion them respectfully we need to take our cues from them as the creator and director of their final scenes regardless of the “guidance” offered by others. There’s nothing more important.

What You Can Do to help foster a meaningful death for your loved one:

  1. 1. Create opportunities to talk about whatever seems important or meaningful to your loved one. Reinforce and validate those things often. Protect their ability to remain engaged in topics they value. Protect their inner solitude if they’re the quiet type.

  1. 2. Be respectful for how differently your loved one may choose to experience their end of life regardless of what the “clinical experts” may suggest.

  1. 3. Get outside support for yourself (kisses and hugs) for how hard it may be to respectfully companion them. This will be especially true when companioning “soldier-types” who may not share outwardly their inner experience. You may have to rely on what you already know about their value system and personality to guide you in your companioning.

  1. 4. Most importantly, remind yourself that what you are witnessing is your loved one finishing their end of life work in a manner and style befitting them whether they are lucid or demented, conscious or non-responsive. Everybody will get their turn to do this. Right now it’s theirs.

Support For