The Legacy of Loss: How Early Fears and Concepts
about Death Shape Older Adults’ Approaches to End-of-Life Concerns
Mae (not her real name) is 84 years old. She was only three years old when her mother
died. She doesn’t remember much about
that experience except her mother saying, “Goodbye, my baby,” as Mae’s uncle
held her close to her mother’s hospital bed.
Then, Mae was quickly taken away to live with her maternal
grandmother. She never set foot in her
family home and she never lived with her father again.
Barely
12 years later, Mae’s world was rocked again…the only other caretaker she
had ever known, her grandmother, died as Mae sat across the room and
watched. Her “Ma,” as she called her,
insisted that Mae stay with her during her dying days, keeping vigil and
attending to her needs. Mae was thrust
again into an unknown world that left her feeling vulnerable and unsafe.
Today,
Mae sits in her recliner in her room at a local nursing home. Four years now she has been alone…four years
since her husband of almost 57 years died and left her with this legacy of
loss. She bravely smiles when asked how
she is, and if someone mentions Carson’s name, a pained look crosses her face
and is quickly replaced by stoicism.
It’s as though the memory of her life with Carson will envelop her and
snuff her own life out. It’s as though
every loss she ever experienced is begging to be felt again and again and
again. It’s more than Mae can
take. So, she sits in silence, staring
at her wedding ring, and pretends this legacy doesn’t exist.
Mae's early childhood and later experiences are not unique. For many older adults, the death of close
family members was an all too common occurrence during the first half of the 20th
century. Advances in medicine that we
take for granted today were not yet available and death was an unwelcome and
frequent visitor in many homes. It
hasn’t been that many years, relatively speaking, since the “deathbed scene”
(DeSpelder & Strickland, 2009, p. 94) governed the way death and dying was
approached in homes around the world (C. Corr, Nabe, & Corr, 2006;
DeSpelder, 2009). Death was a simple
process, an accepted part of the cycle of life, and the purpose of the deathbed
was not to delay death but to witness the end of a life well lived (C. Corr et
al., 2006).
A
cultural shift took place as the 20th century unfolded. Death, according to DeSpelder and Strickland
(2009), became “invisible” (p. 101). No
longer did families hold vigil beside their loved one’s deathbed; death
occurred in sterile and disconnected environments such as hospitals and nursing
homes (C. Corr et al., 2006; DeSpelder & Strickland, 2009). The dying were separated from those who knew
them best, and experienced perhaps their greatest challenge surround by
individuals who “may be unaware of [their] personal interests, values, needs,
and preferences” (C. Corr et al., 2006, p. 34).
Today, some older adults who transitioned through this cultural shift in
the way death is approached fear their own dying process for this very reason
(C. Corr et al., 2006).
Mae’s early experiences of death were
associated with both the detached hospital death that separated her from her
mother, and the more intimate home death of her grandmother. For Mae, where the deaths of these important persons occurred was less
important, though, than the experience of the death itself. For even in the home death scenario, the
“invisible death” (De Spelder & Strickland, 2009, p. 101) attitude
prevailed.
No
one in Mae’s family helped her understand her feelings of loss; no one
acknowledged her pain or confusion over what life would look like now that her
primary caregivers were gone. Mae was
swallowed up in the cultural concept that death should be handled by
professionals, and families should move quickly through the bereavement process
toward reintegration with society (C. Corr et al., 2006). Mae was taught to simply accept death as a
necessary part of the human experience, but she was not taught how to deal with
the overwhelming sense of loss she felt.
This loss eventually
became Mae's legacy…it was the driving force that shaped her decisions for
the rest of her life.
Understanding the Experience of Loss
For years, researchers have tried to
understand the experience of loss.
Perhaps the most familiar explanation of the experience of loss is Elisabeth
Kübler-Ross’s five stages of grief. Kübler-Ross wrote a groundbreaking book
titled, On death and dying, in
1969. Her writing opened the door for
new conversations about the process of dying and the experience of death. In his foreword to the 2014 anniversary
edition of Kübler-Ross’s seminal work, Ira Byock stated,
In a period in which
medical professionals spoke of advanced illness only in euphemisms or oblique
whispered comments, here was a doctor who actually talked with people about their
illness and, more radically still, carefully listened to what they had to say
(p. xii).
The
crowning achievement of Kübler-Ross’s work was that she acknowledged
individuals’ feelings about their impending death and gave them a voice to
express their fears and concerns (Byock, 2014).
Kübler-Ross’s model became known as a “stage” theory, the first of many
such theories to describe predictable patterns of emotions experienced by
individuals experiencing grief, either for their own impending death, or the
loss of a loved one (Stroebe, Schut, & Boerner, 2017).
Kübler-Ross (2014) described the
stages as a linear process in which the dying individual moved from feelings of
shock and disbelief to a gradual acceptance of impending death. Each stage has a specific function that
protects the individual from overwhelming thoughts and feelings that accompany
grief over impending or real loss (Kübler-Ross, 2014).
Kübler-Ross
developed her model to give “voice to dying patients at a time when
communication with them was often perceived by health care professionals as a
‘shameful waste of time’” (Burnier, 2017, p. 50). The model was soon applied to anyone who was
dealing with loss, and became a popular way to explain individuals’ reactions
and behaviors when faced with a loved one’s death.
Some scholars agreed with
Kübler-Ross’s (2014) assessment of the stages of grief but recognized that
individuals would not necessarily move to a subsequent stage of the grief
process without ever going back to a previous stage (Stroebe et al.,
2017). However, for many years, the
forward moving progression of Kübler-Ross’s stage theory was widely accepted.
Does everyone experience the stages of
grief in the same way or in the same order?
The
answer, simply, is:
NO
Not
everyone agreed with or accepted the “stages of grief” model. In fact, Wortman and Silver (1989) criticized
stage models because they assume that every individual will experience every
stage in a predicted order and will eventually recover or resolve the grief.
“It is generally
assumed that although a person who experiences an irrevocable loss will go
through a phase of intense distress, this will not last indefinitely. In fact, after a relatively brief period of
time, the person is expected to achieve a state of recovery and return to
normal role functioning” (Wortman & Silver, 1989).
As professionals continued to study
grief, informed by their own experiences of loss and the experiences of others,
newer explanations for the process of grief emerged. Most notably was Parkes’
model, which was based on the concept of attachment (C. Corr et al., 2006;
Wright & Hogan, 2008). Parkes’ concept of grief looked more like this:
While
intended to be an improvement on stage models of grief, the phase model
proposed by Parkes has been criticized as a process of enduring the grief, and
not as an active process by which the grieving individual works through the
confusing emotions associated with grief (C. Corr et al., 2006).
Phase
theory has been described like a dirty car being pushed through an automated
car wash. Yes, the car comes out clean, but the driver has little to do with
the process of cleaning. In the same way, phase theory is used to describe
grief as an event to “get through” so that on the other side of it, the
individual can return to normal life again (C. Corr et al., 2006).
The problem with both stage theories
and phase theories is that they fail to take into account how the loss itself
continues to impact the person who experienced the loss. Worden (1996) examined the grief experience
as a series of tasks. These tasks may be
re-visited at any time, and are always influenced by future events (Worden,
1996). Worden drew his conclusion from
his observations of children experiencing the death of a parent. Drawing from child development concepts,
Worden explained that children’s understanding of death and loss is based on
their ability to grasp abstract concepts.
At age 3, Mae thought of her mother as being in another place, but still existing.
By
age 15, when her grandmother died, Mae understood that death is permanent
and changes the way those who are still living continue in life.
Worden (1996) viewed the grief process
as a never-ending cycle that begins again with every developmental change,
every new stage of life. As the grieving
individual grows and changes over time, so does the individual’s grief
response. Rather than being a process that is resolved, grief is a process of
renegotiation (Biank & Werner-Lin, 2011). Worden’s tasks of mourning look like this:
As
Mae grew, she imagined her life now with her mother and her grandmother
alive.
·
What
would it look like? Would
they be proud of her? What
would they look like? Would
she look like them, act like them, talk like them?
And with each question,
Mae’s understanding of her own life stages grew more cloudy. She never saw her mother take care of her
grandparents; she didn’t know what it was like to have her grandmother die a natural
death after a long life.
Without an example to follow, or someone to talk to about these important life passages, Mae grew to fear old age, to be scared of her own death.
Mae did not
know that what she was feeling about the losses she had experienced was
completely normal. As one widow said,
‘Bill and I never
talked about death. He always believed if we talked about it, one of us would
die.’ They didn’t talk about death, but he died anyway at the age of 80. His
widow was left with many things she had never told him and a deep sense of
guilt to compound the pain of her grief. (Deits, 1992, p. 199)
Sharing the Legacy of Loss
How can we help Mae as she
approaches her own death in the coming years?
Is there anything we can do to share in her legacy of loss? Davis-Berman (2011) said there is much we can
do to help our elders face their fears about death. Davis-Berman described the kind of distress
Mae feels as death anxiety (p.
354). Many elders cling to the notion
that talking about death is off-limits.
Like Bill, they believe that to acknowledge death as a reality will
hasten its arrival (Davis-Berman, 2011).
Have
a conversation
Davis-Berman suggested having a
conversation with elders about their thoughts and beliefs surrounding
death. Some questions that might be
asked include:
- How often do you have thoughts about your own death? What do you think about?
- How often do you have thoughts about the deaths of others? What kinds of thoughts do you have?
- How do you live your life as an older person with death as a possibility in the future?
- Do you think that death is easier or harder to think about and deal with as you grow older?
- Are you more or less afraid of death as you grow older?
Talk about what
the end should look like
Don’t be afraid to have a
conversation with your older loved one about their desires and wishes for
end-of-life care. Talking with
individuals about end-of-life care is a well-supported practice that reduces
anxiety, depression, and fear about the process of dying (Van Scoy et al.,
2017). If starting a conversation about
death feels awkward, try playing a game that invites discussion about
end-of-life care. One such game is
called, Gift of Grace. You can learn
more about it or order it here: http://www.mygiftofgrace.com/. The game involves a series of questions that
can be used as conversation starters to help families learn what their loved
ones want most as they age and prepare for death (Van Scoy et al., 2017). These important conversations will facilitate
ethical and respectful care at a time when our emotions may influence the types
of decisions we make for our loved ones as they near death. Types of questions
include:
Here
are a few comments from those who have used The
Gift of Grace (Common Practice, 2016; Van Scoy et al., 2017) to help start
important conversations with their family, their patients, and their staff:
“My Gift of Grace has been
wonderfully effective at Mercy – beyond our expectations. We are using the game
as a conversation starter in a variety of settings, ranging from physician
offices, to inpatient ICU, to area classrooms. The
game is a non-threatening, fun way to start a conversation around goals,
expectations, and directions of treatment.” – Robert, M.D. (Common
Practice, 2016)
“I loved that some family members
were very humorous and others very sincere. Playing the game was really a sweet
time together. Some people in my family were excited to play, some were
hesitant. But thanks to those Thank You chips, we were able to have a good time
and a good conversation. – Andrew, hospital chaplain (Common
Practice, 2016)
“This
game is not only valuable to the clients we serve, to facilitate effective
communication between caregivers, but it is also a valuable tool to open up
dialogue between family members. I played the game with my own father who is
dying of emphysema. It was easier for me to say to my dad—”hey let’s play a
conversation game” versus “let’s talk about this heavy topic of death.” He is
totally up for a game. When I start reading the poignant, excellently
communicated questions it just gives me goose-bumps because this concept really
touches my heart, and my life’s work to bring death communication out into the
open. Every family should add this to their game collection.” – Sherry, family
member (Common
Practice, 2016)
Above
all, always seek to understand elders through the lens of their legacy of
loss. We must be continually aware that
what we may see as a minor occurrence – a lost favorite hairbrush, for example
– is filtered through the elder’s life experiences of loss; her possessions, her
friendships, her closest relationships are one by one being taken away and she
re-negotiates her legacy of loss with each new experience of loss. “Grief becomes a primary context within which
[a] child’s development occurs. Loss
becomes integrated into the [individual’s] core self at each stage of
development…reworking the [loved one’s] life and death are not evidence of
pathology,” (Biank & Werner-Lin, 2011) but an outflow of the individual’s
great ability to renegotiate and integrate their loss into their life.
Soon,
Mae will experience the final separation from this world; she will release
her hold on the present and cross into the afterlife to join her husband, her
grandmother, and her mother. She doesn’t
have to walk this final road alone. Take
her hand, experience her legacy of loss, and share hope with her.
References
Biank, N. M.,
& Werner-Lin, A. (2011). Growing up with grief: Revisiting the death of a
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(2017). A battle of words. Journal of
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Byock, I.
(2014). Foreword to the anniversary edition. In E. Kübler-Ross, On Death and Dying (Anniversary ed.; pp.
xi-xv). New York, NY: Scribner.
Common Practice.
(2016). My gift of grace: Testimonials. Retrieved from http://www.mygiftofgrace.com/testimonials
Corr, C. A.,
Nabe, C. M., & Corr, D. M. (2006). Death
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(1992). Life after loss: A personal guide
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