Tag: Glioblastoma

Nov 15

Suddenly a Caregiver – Grieving (Part 3 of 4)

This article is part 3 of 4 of the chapter about grief from my soon to be released book – Suddenly a Caregiver. I was the primary family caregiver for my wife who battled brain cancer for nearly four years. The chapter – Grieving – shares the grieving and recovery experience. I hope my experience provides a source of learning for you.

Visit the book page and the Facebook page for book release information. The first 100 people that register will receive a coupon for a free eBook edition upon release.

Read Suddenly a Caregiver – Grieving (Part 1 of 4)

Read Suddenly a Caregiver – Grieving (Part 2 of 4)

 

Anticipatory Grief

Many patients with terminal illness, and family members or friends who care for them often recognize that death will come eventually. They then begin to anticipate the grief. In the case of Lynne’s diagnosis, my research led me to realize the incredible odds against surviving glioblastoma. Despite those odds, I Suddenly a Caregiverdid hold out hope that this case would become an exception, rather than the rule. However, as I reflect back, I realize that I began to anticipate grief while holding on to hope. At some point, I believe Lynne also recognized that the end of her fight was approaching. I believe through her awareness that she helped me prepare for that event. In my case, I believe the anticipatory grief helped me to make the adjustments needed when Lynne passed.

Societal practices try to help people through the grieving process. Funerals provide one such practice. Writing public death notices, writing obituaries, and other traditions contribute to the acceptance of the loss. These help us to face the reality of the loss, which describes a necessary step in the recovery process. Discussing our pain, sharing memories, and sharing experiences help us to face and work through the pain of loss. Recovering from grief includes adjusting to the new environment without a friend, child, parent, spouse, or other loved one. Finally, I hope that we begin to invest anew in our lives while maintain the memories we have of the one who passed.

With the introduction of the Internet, we discover new ways that people can use online communication and build relationships to facilitate the process of grief. In a later chapter, I discuss my use of technology and the Internet during Lynne’s illness. I maintained a blog to facilitate communication with friends and family. The day Lynne died, I posted a message on my blog, and on that same day, over 500 people viewed the message. That post was one-step toward addressing the reality of the loss. As I researched for this chapter, I also located grief forums, where people exchange their situations with other people, mostly strangers but strangers experiencing the grief caused by a loss of their own. The anonymity provided by the online forums supports people in opening up, venting their frustration, anger, and other emotions. It also provides other people an opportunity to show support, encouragement, and provide advice.

Preparation for Grief

Preparation for grief was an important piece of the recovery from my loss. When I say, preparation, you might think that it started during Lynne’s illness. I believe that for me, it started much earlier and demonstrated itself in various ways. Because my dad served as a preacher, exposure to death occurred earlier and more often to me than for most young people. Like most, I lived life as if it were going to last forever; however, the exposure to death created an impression on me. The exposure to death helped me to realize that this life is temporary. This mindset helped me to share my appreciation of others before it was too late. Too many times, I heard others speak about their regrets concerning not sharing how much they loved someone or appreciated his or her example until after the death. I feel that is a pity. I decided to ensure that I tried to share my appreciation with those I cared about while they were still living.

Preparation for loss also included setting aside any grudges, anger, bad feelings, and other things that most of us would regret holding onto after the loss of someone close to us. This also includes apologizing to someone for some wrong that we caused. I discovered that stepping up and apologizing when I was wrong was much better than holding onto that wrong eventually causing a regret following the loss of that special person. Avoiding the apology for the wrong might cause regret eventually, following the loss of that special person. This type of preparation averts the regrets we often feel during a loss, whether the loss is sudden, or resulting from a long illness.

 

In the next part of this series, I will share information about some lessons learned by me and my family.

Please share your comments, thoughts, and suggestions.

Permanent link to this article: http://darrylpendergrass.com/Blog/suddenly-a-caregiver-grieving-part-3-of-4/

Nov 14

Suddenly a Caregiver – Grieving (Part 2 of 4)

This article is part 2 of 4 of the chapter about grief from my soon to be released book – Suddenly a Caregiver. I was the primary family caregiver for my wife who battled brain cancer for nearly four years. The chapter – Grieving – shares the grieving and recovery experience. I hope my experience provides a source of learning for you.

Visit the book page and the Facebook page for book release information. The first 100 people that register will receive a coupon for a free eBook edition upon release.

Read Suddenly a Caregiver – Grieving (Part 1 of 4)

Grief Models

While different grief models exist, proposed by many experts, in 1969, Kübler-Ross published the first, widely accepted model of grief. This work provided insight into the emotions that people experience when facing death. Much literature references this model and serves as a basis for discussion, in many

Suddenly a Caregiverarticles and papers that followed its release. Later, other researchers extended or revised the model to include other people who experience grief, not only to those facing death. The model suggested a linear progression through the grief. Over time, a growing number of experts rejected the idea that people progress sequentially through the phases. As a result, some experts subsequently provided additional models to help understand grief and the affects that grief has on people.

Like me, you might discover parallels within your grief like those described in the model. Some describe the experience with these grief phases as overlapping at times with some phases extending for prolonged times. I know that grief is not a tidy or straightforward process. Some claim the grief experience feels more like the ball in a pinball machine bouncing from one stage to another with nothing described as sequential. We just need to keep in mind that the way each person experiences grief is unique to the individual. The one huge benefit of these models is that they provide some legitimization for the emotions we experience as individuals as we recover from a significant loss.

Because people reference the Kübler-Ross model most often, I will provide an overview of the following stages:

Shock and Denial

During the shock and denial phase, the shock of the loss is overwhelming. This occurs whether the loss is sudden or anticipated. The griever tends to deny that the loss will occur or has already occurred. This is a normal part of process for most people. The brain’s protection mechanisms help griever’s try to cope with the loss.

Anger

Another normal part of grief is the emotion of anger that surfaces because of the loss or the anticipation of the loss. The griever may blame family, friends, or even themselves. The grieved may even blame the person they lost. It is important that the griever express the emotions through sharing with a trusted person to avoid prolonged depression, self-destructive behaviors, health issues, or other negative effects. Depending on the depth of grief, this may lead to a friend, spiritual advisor, counselor, therapist, or physician.

Bargaining

In the bargaining phase, the grieved bargain with themselves, other people, or even with God to avert the loss. The grieved try to seek out options to change the reality of the loss.

Depression

For some, the depression phase is the feeling of sadness or despair, while for others this phase results in clinical depression. It is important to seek out support from a doctor, counselor, therapist, friend, or support group. This phase often leads to other problems, both physical and emotional, if not addressed. For some, this phase is often the longest phase of the grieving process. We pay this price as human beings because we care about others. In any major loss, it is not a sign of weakness to ask for support, in fact, this is an inevitable step, necessary in the grief recovery process. The griever then begins to deal with the often-painful memories and begins to learn to cope with the life changes resulting from the loss.

Acceptance

The acceptance phase results when the pain of the loss begins to lessen. The griever begins to look ahead. The acceptance of the loss causes the griever to move forward, embracing, or at least accepting the changes that the loss created in their lives. The depleted energy resulting from grief begins to increase steadily, as the weight of sadness and despair begin to lift from the griever’s shoulders.

Most people move through these phases of grief. The length of time a person spends during each phase depends on the circumstances and is unique to each individual. It is very easy to compare ourselves to other people, and judge that something might be wrong with us, when we do not handle the grief similarly. Just remember, you are unique. Take comfort that your grief recovery is also unique to you. I learned about the grieving process during my studies several years before Lynne’s diagnosis and death. That understanding helped me to recognize my emotions and my feelings as well as to accept that they were normal, and to be expected, during a significant loss.

I observed many families over time that lost a loved one. One of the most profound losses a person experiences is that of a spouse because of the relationship depth and the additional potential for economic losses. Based on discussions with those losing a spouse, I believe that losing a spouse affects the relationship within the social circles that the couple shared. I believe there are two contributing factors. First, the surviving spouse drawers closer to their own family for support. Second, others within the social circles struggle with the surviving spouse due to a partial loss of identify, that is, the transition from a “couple” to that of a  widow or widower. Observations also indicate an increased mortality rate among the surviving spouses, especially in older people due to the major stressor (Gass, 1987, as cited by Harvard Medical School).

In our society, most people recognize the inevitable nature of death but many rarely experience the process because societal norms tend to hide death behind the walls of health care facilities. This tends to deemphasize the process of grieving. This potentially decreases our ability cope. Sometimes during a terminal illness, a struggle exists between health care providers and families, regarding disclosure of all the facts surrounding the illness. Health care facilities and health care providers maintain various and differing ideologies. This is understandable because some people want the facts and others try to avoid the facts. This simply demonstrates the differences in the ability to cope with illness and the potentially impending death.

 

In the next part of this series, I will share information about anticipatory grief and preparing for grief.

Please share your comments, thoughts, and suggestions.

References

Harvard Medical School. (2011). Beyond the five stages of grief. The bereavement process is seldom linear and varies from one person to the next. The Harvard Mental Health Letter / From Harvard Medical School, 28(6), 3.

Permanent link to this article: http://darrylpendergrass.com/Blog/suddenly-a-caregiver-grieving-part-2-of-4/

Nov 13

Suddenly a Caregiver – Grieving (Part 1 of 4)

This article is part 1 of 4 from my soon to be released book – Suddenly a Caregiver. I was the primary family caregiver for my wife who battled brain cancer for nearly four years. The chapter – Grieving – shares the grieving and recovery experience. I hope my experience provides a source of learning for you.

Visit the book page and the Facebook page for book release information. The first 100 people that register will receive a coupon for a free eBook edition upon release.

Grief is a universal human experience that will affect every one of us at some point in our life. Although grief is universal, each person prepares for grief, Suddenly a Caregiverexperiences grief, and recovers from grief in unique ways. There are guiding principles that we can apply to our grief but your recovery is unique to your circumstance. You may judge yourself. You might feel as though you recovered from grief too quickly. You might feel as though your grieving is lasting too long. Just keep in mind that your grief is as individual as you are and so is your recovery. It is also natural to believe that others are making judgments about your grief. While that may be the case, your grief is your path, which may look very different compared to the path of someone else.

My grieving process started at the point of Lynne’s diagnosis, not her death. The week following her diagnosis, I spent nearly every evening shedding tears and agonizing over the future that lay ahead. Thoughts of unfulfilled dreams and goal circled my mind numerous times throughout each day. As I researched the disease, the certainty of Lynne’s eventual death moved to the forefront of my mind. I tried to balance those thoughts with the hope that Lynne’s case might be different in some way, but it was an internal struggle.

Like any couple, we held onto the hope that our plans for the future would remain intact. We discussed goals throughout our marriage about retirement. We shared about the continued ability to travel. We shared thoughts about the enjoyment of watching grandchildren grow up. We discussed our dreams of a slower paced life hoping to enjoy the simpler things in life. Those kind of things we tend to take for granted in our younger years as we focus on building our lives and careers. In one day, the plans and dreams we made together seemed to shatter like a glass hitting a tile floor. Forever lost with no possibility of ever putting the glass back together.

About six years earlier because of my responsibilities as a deacon at the Sun Valley Church of Christ, I enrolled in a course to help me enhance my skills and abilities as a people helper. As a people helper, people often approached me to share personal struggles. I desired a better foundation of knowledge to help me guide them through their struggles. A few of the classes within that course of study helped me to prepare for what was ahead in my own life. One class covered forgiveness, letting go of the past and the pain. Another covered marriage and keeping the love alive. Another covered pain and suffering, for learning to help people in a hurting world. Yet another covered managing stress and anxiety. The most important class that would bear on my own future was a class about grief and loss. While my intent was to learn about these topics to assist others, the importance of that learning helped me to understand the emotional turmoil that I was facing and some techniques to help me manage my way through the pain.

Grief is a process that causes psychological pain, creating emotional turmoil with feelings of guilt, depression, anger, sadness, helplessness, rage, loneliness, resentment, and hopelessness. I learned that the emotions that swirled within me were a normal part of the grieving process. Recognizing that early, helped me to be easy on myself as I worked through the grieving process. I believed that I moved to the acceptance phase of the process more quickly than most, in part because of the training I had received.

Another source of strength at that time was my spiritual upbringing and lifestyle. This was also a big part of Lynne’s life. With this similar outlook on life, we were able to be in tune with one another. I reflected on one biblical passage frequently, “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future” (Jeremiah 29:11, New International Version). Despite this tragedy, I believed that God had a plan. His eternal nature, unrestricted by time enables Him to see what we refer to as the past as well as into what we refer to as the future. Time limits me, by allowing me to see only the past and the immediate. Because I cannot see into the future, I reasoned that God could see some future event in Lynne’s life that might be much worse than glioblastoma. To me, there could be no worse event but that might simply be due to the limitations placed on me by time and the inability to see into the future.

After Lynne’s death, I read a grief recovery book that helped me understand why the depth of grief for one person might be different when compared to the depth experienced by another person. Recovery from grief suggests the ability to recall the good memories you hold fondly while minimizing those feelings of remorse or holding on to the regrets that you are harboring (James & Russell, 2009). I see this as key to understanding the relatively short duration of my personal grieving period.

Lynne and I were very compatible and truly enjoyed our 31 years together as a married couple. We had our fair share of disagreements and disputes along the way. However, we did enjoy a marriage that others recognized in positive ways. The enjoyment of our marriage increased dramatically during Lynne’s illness. This may seem very strange to you, so please allow me to explain this phenomenon.

Throughout the early years of our marriage, I appreciated and was grateful for Lynne’s concern for others, her willingness to help others, and her support and care for me and our children. Lynne impressed me with her ability to run our home, her industrious nature and attention to details, and a slew of other traits. Yet in the last four years of Lynne’s life, I witnessed a courage, vision, and personal strength that I had underestimated in our earlier years together. During those final years, we also discussed topics that most people try to avoid such as death and dying. We discussed what we hoped for one another. She shared her desire that I find another woman to love and care for after she passed. A topic like that may seem like a ridiculous discussion when in health, but it is not whenever someone faces the last stages of life. Lynne shared her appreciation of my care and love for her and her acceptance that I would love and care for another woman in the future. Even before her death, she released me from the anxiety of the considerations concerning moving on with life, after she passed. In that discussion, she released me from the anxiety or guilt associated with moving forward in life.

In the next part of this series, I will share information about grief recover models. Understanding grief models help me to understand the grieving process.

Please share your comments, thoughts, and suggestions.

References
James, John W. and Friedman, Russel. (2009). The grief recovery handbook (20th anniversary expanded edition). HarperCollins e-books.
Zondervan. (1984). New international version Holy Bible. Grand Rapids: Zondervan

Permanent link to this article: http://darrylpendergrass.com/Blog/suddenly-a-caregiver-grieving-part-1-of-4/

Oct 18

Suddenly a Caregiver – Book in Progress

Suddenly a Caregiver

Sharing a family’s experience and lessons learned to help you through the unexpected responsibility of becoming a family caregiver. Suddenly a CaregiverAt the urging of friends and family, I started working on a book about caregiving for someone diagnosed with gliobastoma multiforme (GBM) – a stage 4 brain cancer. Glioblastoma effects over 10,000 Americans per year (CBTRUS, 2012). In a single day, I suddenly became a caregiver. I received a crash course about brain tumors and cancer and my new role as an advocate to communicate with doctors to ensure the best treatment plan possible. I learned about the needs of someone suffering from this deadly disease. I want to share the story of one person’s courage in her fight against this disease and the lessons that I learned along the way. My hope is that our story will be a source of encouragement and strength for you if you find yourself Suddenly a Caregiver. Visit Book Page Visit Facebook Pageto join the discussion

References

CBTRUS. (2012). Primary brain and central nervous system tumors diagnosed in the United States in 2004-2008. Retrieved from http://www.cbtrus.org/2012-NPCR-SEER/CBTRUS_Report_2004-2008_3-23-2012.pdf

Permanent link to this article: http://darrylpendergrass.com/Blog/book-in-progress/