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Writer's pictureCindy Davis

Grieving Changes in Life Before the Death Even Happens


Man with Alzheimer's Disease

Anticipatory Grief is a complex emotional process you might go through when facing the inevitable loss of a loved one. It serves as a coping mechanism, helping you prepare for what's ahead. This type of grief can begin long before an actual loss occurs, unfolding over days, months, or even years as you watch a loved one gradually decline due to illness.

 

By recognizing and naming these occurrences as parts of anticipatory and illness-related grief, you can better handle the emotional complexities of caring for someone with a serious illness. It’s a step towards preparing yourself for the eventual loss, making the necessary emotional adjustments, and finding support during this profoundly challenging period.


The Onset of Anticipatory Grief

The journey of Anticipatory Grief often starts without a specific triggering event. Unlike the clear-cut onset of bereavement that follows a loved one's death, Anticipatory Grief lacks a definitive starting point. Thanks to medical advancements that have extended the time between diagnosis and death, mourning can begin as early as the diagnosis of a chronic or terminal condition. This prolonged duration adds a complex layer to your emotional journey, as you find yourself grappling with the slow deterioration of someone you care about.

 

As you navigate this extended period, the weight of this long, slow pain bears down on you. The role of caregiver, while potentially fulfilling, often brings immense frustration as you support your loved one's quality of life, all the while knowing that you cannot halt the progression of their illness. This part of your journey can feel like a prolonged goodbye, filled with love, care, and inevitable heartache.


Differentiating Between Types of Pre-Death Grief

Experts like Allison Werner-Lin, Ph.D., a licensed clinical social worker and associate professor at the University of Pennsylvania’s School of Social Policy and Practice, note that Anticipatory Grief, sometimes called anticipatory loss or preparatory grief, involves distress related to an impending death. Dr. Werner-Lin describes it as the emotional response to the anticipation of life-altering changes, where bereavement begins even before a loss occurs.


This grief can be divided into two distinct types:


  • Anticipatory Grief. This is future-oriented and characterized by anxiety over separation and worries about living without your loved one's physical presence.

  • Illness-Related Grief. This form is present-oriented, focusing on the current losses that occur throughout the illness trajectory, such as gradual declines in your loved one’s abilities and independence.

 

These definitions are beneficial in clarifying what many face when dealing with a life-limiting illness. Comprehending these concepts can provide you with a framework to recognize your feelings and reactions during this challenging time, allowing for a more informed and compassionate approach to both your grief and your caregiving responsibilities.


How Does Anticipatory Grief Differ From Conventional Grief?

Anticipatory Grief is a unique emotional experience, distinct from the grief that occurs after death, often referred to as conventional grief. While conventional grief is a reaction to a loss that has already happened, Anticipatory Grief involves preparing for an expected loss. This forward-looking grief has you contemplating not only the inevitable but also the multitude of changes that will follow.


Looking Forward vs. Looking Back

Conventional grief, as described by Allison Werner-Lin, can be thought of as "grieving backward"—you mourn a loss that has already occurred. In contrast, Anticipatory Grief is about “grieving forward.” It's about bracing for what is yet to come, mourning the future absence of your loved one while they are still here. This type of grief has you wrestling with thoughts about future changes and the looming emptiness that will follow your loved one's passing.


Contemplating Life Without Your Loved One

With Anticipatory Grief, you find yourself facing many of the same questions that arise in conventional grief, such as:


  • What will I do without them?

  • How will my life change?

  • How will I continue living?

 

The key difference is that the loss hasn't actually occurred yet. You haven't moved through the acute phase of loss, nor have you started the healing process or begun to rebuild your life without your loved one. Instead, you're in a prolonged state of mourning, anticipating these changes.

 

This kind of grief often involves intense, persistent anxiety about the upcoming major life change. Whether these thoughts are at the forefront of your mind or simmering just below the surface, the emotional toll is monumental and enduring. Grasping this distinction can help you manage the complex feelings that come with Anticipatory Grief and may prepare you better for the eventual transition to Good Grief once the loss occurs.


Who Is Susceptible to Anticipatory Grief?

Anticipatory Grief is not limited to those who are directly facing an imminent loss; it can affect anyone closely connected to someone with a terminal illness, including family members, friends, and caregivers. The impact of Anticipatory Grief can vary widely, but certain groups and scenarios can intensify these feelings.


Understanding Anticipatory Grief’s Broad Impact

If you or a loved one has been diagnosed with a terminal or degenerative disease, such as Alzheimer's disease, other forms of dementia, or Parkinson's disease, you may find yourself experiencing Anticipatory Grief. This kind of grief often includes preoccupation with thoughts of what life might have been like without the illness. Researchers have noted that caregivers, in particular, struggle deeply with these thoughts, mourning the progressive loss of the person they once knew even before the person has passed away. There are multiple scenarios that may trigger Anticipatory Grief.  Here are a few of those common for older adults and their caregivers.


  • End-of-Life Care Concerns. As you care for someone nearing the end of their life, you might find yourself overwhelmed with anxiety about the future, affecting even your moments of rest. Questions about how to cope with the coming changes and the ultimate loss can be distressing and constant.

 

  • Hereditary Cancer Risks. If you are at an elevated risk for cancer due to genetic conditions, Anticipatory Grief may manifest as you consider the potential for a future cancer diagnosis and its implications. The anxiety about how such a diagnosis would alter your life and quality of living can be a major source of Anticipatory Grief.

 

  • Awaiting an Organ Transplant. Patients listed for an organ transplant, such as a heart transplant, often go through a complex form of Anticipatory Grief. Not only are you possibly grieving the scenarios of your own mortality, but you may also find yourself grieving for the donor whose death might extend your life. This dual aspect of grieving can add an additional layer of emotional complexity.


Age and Anticipatory Grief

Interestingly, age can play a big role in how intensely you feel Anticipatory Grief. Younger individuals often feel the impacts of Anticipatory Grief more acutely, especially when it relates to the death of someone close. This intensity may be due to the stark contrast between the expectations of a life yet to be lived and the reality of an impending loss.


Recognizing the Signs and Symptoms of Anticipatory Grief

As you cope with Anticipatory Grief, it's important to be aware of the varied and often intense signs and symptoms that can manifest during this challenging time. Recognizing these signs not only helps you know what you are experiencing but also guides you in seeking appropriate support.


Emotional and Psychological Signs and Symptoms of Anticipatory Grief

You may find yourself grappling with a mix of these complex emotions that can fluctuate frequently:


  • Anger or irritability might arise, causing you to feel unexplainably short-tempered or angry.

  • Anxiety could dominate your thoughts, creating a pervasive sense of worry, especially about future scenarios without your loved one.

  • Denial may lead you to refuse to acknowledge the impending loss, maintaining a belief that it can’t be happening.

  • Desperation might manifest as feelings of urgency or a need to fix situations out of your control, which can become overwhelming.

  • Dread can weigh heavily on you, bringing a deep sense of fear about the coming loss and its implications.

  • Guilt may surface as you blame yourself for things done or not done, or even for feeling relieved at times.

  • Loneliness can envelop you, even in the presence of others, leading to a profound sense of isolation.

  • Sadness and tearfulness are common as you face deep sorrow and frequent crying spells while contemplating the impending loss.


Physical Symptoms of Anticipatory Grief

The stress of Anticipatory Grief can also affect your physical health:

 

  • Lethargy or lack of motivation may have you feeling tired all the time or finding it hard to engage in activities you once enjoyed. 

  • Difficulty sleeping might make your nights restless, or you may find it hard to fall asleep while thinking about what’s to come. 

  • Loss of appetite could lead to you seeing eating as unimportant, or you might skip meals without realizing it. 

  • Difficulty concentrating may make your mind feel foggy, making it hard to focus on tasks at work or at home.


Behavioral Symptoms of Anticipatory Grief

Changes in how you interact with the world and others are also indicative of Anticipatory Grief:

 

  • Withdrawal from social situations might see you pulling away from friends and activities, preferring solitude.

  • Loss of control over one’s emotions can lead to unexpected outbursts of tears or anger without clear reasons.

  • Being preoccupied may involve constantly replaying different scenarios in your head, thinking about past conversations, or imagining future challenges without your loved one.

 

Understanding these signs and acknowledging them as normal parts of Anticipatory Grief can help you cope more effectively. It’s important to give yourself permission to feel these emotions and to seek support when the burden feels too heavy. Whether it’s talking to a friend, joining a support group, or seeking professional counseling, taking steps to manage your Anticipatory Grief can provide relief and clarity as you prepare for what lies ahead.


Exploring the Stages of Anticipatory Grief

As you contend with Anticipatory Grief, you may find similarities with the widely recognized five stages of grief—denial, anger, bargaining, depression, and acceptance. However, Anticipatory Grief does not follow a linear path, and there is no predictable order in which you will encounter Anticipatory Grief stages. It's common to feel a whirlwind of emotions one day and none the next, or to revisit feelings you thought had passed. Researchers have identified four distinct stages of Anticipatory Grief that you may encounter:

Graphic with 4 Phases of Anticipatory Grief
Four Phases of Anticipatory Grief

Acceptance

In the acceptance stage, you come to recognize that the loss of your loved one is inevitable. It is common to experience a mix of emotions such as sadness, denial, anger, and even depression during this time. This stage is often accompanied by profound sadness as you begin to accept the reality of the impending loss.


Reflection

As you progress through the reflection stage, you start to process and come to terms with your feelings. This phase might bring up feelings of regret, guilt, and remorse. You might find yourself reflecting on past interactions with your loved one, perhaps feeling regret over unresolved conflicts or things left unsaid. This is a critical time for emotional reconciliation and perceiving the depth of your bond.


Rehearsal

During the rehearsal stage, you begin to mentally prepare for what the actual moment of loss will entail and the immediate aftermath. This can include thinking about practical matters such as funeral arrangements or how you will handle your loved one's possessions. It’s also a time when you might start to say your goodbyes and get affairs in order, focusing on the details that will need attention once the loss occurs.


Imagining the Future

Finally, the imagining the future stage involves visualizing how life will continue without your loved one. This might include picturing upcoming holidays, special occasions, or everyday life without their presence. It's a phase where you begin to mentally prepare for the new normal, considering both the emotional and practical adjustments that will need to be made. If you are the one facing a terminal illness, you might also ponder what your loved ones’ lives will be like after your passing or what might await you beyond death.

 

Each of these stages involves its own challenges and emotional processes. By understanding these stages, you can better prepare yourself for the journey of Anticipatory Grief, allowing for a more compassionate and introspective approach to managing the complex feelings that arise as you await a significant loss.


Coping Strategies for Anticipatory Grief

Navigating Anticipatory Grief can be an intensely personal and sometimes overwhelming occurrence. Here are some ways to help you cope more effectively with the emotional challenges you're facing:


Open Communication

Don't hesitate to share what you're going through. It's essential to talk about your feelings and incidents. Dr. Josell emphasizes, "When we think we're unique and the only person who's ever experienced something, it makes everything worse." Connecting with others who have gone through similar journeys or have felt similar emotions can be incredibly supportive and validating. Sharing can alleviate some of the loneliness and isolation that often accompany grief.


Embrace Your Emotions

It's common to be taught to suppress your emotions and maintain composure—don't let others see you cry or become upset. However, Dr. Josell warns that this is not a healthy way to handle emotions. Suppressing them often leads to them emerging in other, sometimes harmful ways, such as overeating or turning to substances like alcohol and drugs. Instead, allow yourself to feel your emotions. "When we let ourselves feel it, those emotions tend to dissipate a lot more quickly than if we try to hold them back or ignore them," she explains. Allowing yourself to experience your feelings fully can lead to a faster and more genuine healing process.


Prioritize Self-Care

Taking care of yourself is crucial, especially during emotionally taxing times. Dr. Josell notes, "When we're not in a good place, we stop taking care of ourselves." Ensure you focus on maintaining healthy habits—get adequate sleep, eat nutritious meals, stay hydrated, and engage in physical activity. Surround yourself with people who bring you joy and uplift your spirits. Prioritizing your well-being can help you maintain the strength you need to manage your Anticipatory Grief and prepare for what lies ahead.

 

By implementing these coping strategies, you can find a way to navigate the challenging waters of Anticipatory Grief with resilience and support, making the journey a bit more bearable as you prepare for the inevitable changes that come with losing someone close to you.

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