Anticipatory Grief & The 3 E’s of Self-Compassion

Like an ant on a stick both ends of which are burning,

I go to and from without knowing what to do,

and in great despair …

Graciously look upon me.

Thy love is my refuge. Amen."

~ Traditional Prayer, India

Caregiving is an heroic act that needs more recognition and support. From spouses to adult children to pet parents and veterinarians to nurses and physicians, the level of care provided to one living with a serious health condition takes an existential toll.

In this blog series, I explore the life of caregivers and offer tips on how to walk the noble road while maintaining one’s emotional, cognitive, and physiological health. This week, we look at anticipatory grief and its impact on the mind, body, and spirit. We then review the 3 E’s of Self-Compassion: Expression, Engagement, and Empowerment and their protective factors for those experiencing anticipatory grief.

what is Anticipatory Grief?

Anticipatory grief refers to distressful feelings such as sadness, fear, guilt, shock, or anger occurring days, weeks, or months before an impending loss. Anticipatory grief can occur across the lifespan in response to a variety of life challenges: health crises, e.g., a life-threatening illness, hereditary risks of disease, a transplant, an amputation; pregnancy complications and premature births; a lifestyle change, e.g., a move, new job, retirement; the aging of a beloved pet.

Like compassion fatigue, anticipatory grief is a combination of emotional, cognitive, and physiological responses to a distressing situation in which one feels the limitations of being human. As a caregiver, you may experience anticipatory grief in myriad ways.

The Indian prayer opening this post puts to words what many caregivers experience: diligently focused on staying on top of everything … even though it feels like walking on the verge collapse … even though it feels like you’ve never been here before and never want to return … even though your heart is crying silently in anticipation of the worst case scenario yet to come.

For those caregivers who tend to loved ones and/or patients with terminal illness:

Anticipating death can make caregivers grow more aware of the patients and their own mortality; often, they experience a sense of being “static in time” and feel that it is impossible to plan for the future (Olson, 2014), which can lead to possible maladaptive responses to bereavement (Levy, 1991). [1]

As we shall see in the following case study,* the realization of potential death can upend the life of the patient and the caregiver.

A Case Study: Retirement Hopes Halted

Betty and Frank have been together 56 years. They met under an apple tree in Upstate New York while on a 4-H field trip, fell in love in high school, and married after Frank returned from serving a 4-year tour in Vietnam. Betty is an only child; Frank is the youngest of four boys. The couple has no human children, but their home has always been a refuge for rescue animals and their nieces and nephews. In 2016, Betty and Frank sold their apple orchard and set out to experience the world together in retirement. Plans were sketched out for travel to Europe, Asia, Australia, South America, Great Britain, and the Polynesian Islands—in no particular order—but with distinct interest in discovering the local color and culture along the journey.

In 2019, they needed to return early from their South American trip after Frank began exhibiting increasingly elevated cognitive and physical changes, including confusion, forgetfulness, incontinence, and nighttime restlessness. After a battery of tests and scans, Frank’s physician shared the results and explained that his changes were indicative of middle-stage Alzheimer’s. [2] Despite Frank’s insistence that he move to an assisted living facility, Betty overruled him. Frank continues to live in their home, and Betty is his primary caregiver. One Saturday, their niece Josie pulls Betty aside and suggests that she seek supportive counseling, noting that her aunt has begun to exhibit increased anxiety, irritability, and withdrawal while also appearing gaunt.

Emotional Responses

Frank’s early signs of cognitive change had been something the couple joked about: Where are my keys? Why did I walk into the kitchen again? Betty and Frank seemed, at first, to experience similar memory issues. Age-appropriate memory impairment occurs in approximately 40% of individuals 65 and older. It does not impact your ability to complete activities of daily living (ADLs) such as dressing, toileting, eating, bathing, ambulating, and continence. [3] As Frank’s dementia progressed, Betty noticed that he was unable to complete ADLs, struggled to complete tasks, and he had difficulty learning and remembering new things.

Betty began to experience many of the emotional responses to anticipatory grief. As she began to worry more about his health, she found herself grieving over his physical decline and the end of their retirement travels. When such feelings arose, however, she felt guilty for thinking such thoughts when her husband was suffering so. Shame can accompany anticipatory grief, which in turn can lead to irritability, anger, depression, and withdrawal from friends, family, and community.

Cognitive & Physical Responses

Betty described her emotions as “all over the map.” She awoke in the middle of the night, unable to fall back asleep due to perseverating thoughts about Frank, her fears of being unable to care for him, and her own medical appointments she kept canceling. Even they were not given a prognosis, Betty described a movie playing over and over in her mind about her husband’s last days of life. This mental loop played in the background when she bathed him, prepared meals, and helped him to the bathroom. She then began to feel guilty for thinking non-stop about her husband’s death, noting that she wished she could enjoy every moment together instead of focusing on the future. At times her stomach was so tied in knots that she’d run to the bathroom to vomit, but she had eaten so little that nothing came up.

The 3 E’s of Self-Compassion in Caregiving

When a caregiver, helper, or healer comes to me for counseling, we first work together to identify their strengths. Using the Wheel of Wellbeing, we assess what is working well for them and then turn to what is not. Frequently, clients discover that they have let go of things that had always been their strengths—talking with family and friends, exercise, meditation and prayer, and healthy eating. The 3 E’s of self-compassion in caregiving includes: Expression, Engagement, and Empowerment and they follow in order. To discover what you lack, you need to express your caregiving experiences; engage in activities that reduce your distress; and empower yourself to make healthy choices.

Expression

The ability to express your emotions to someone who can listen empathically, non-judgmentally, and compassionately to you can help reduce feelings of alienation, guilt, fear, loss, and anger—all natural responses to anticipatory grief. Individual counseling provide a safe space to explore your feelings and develop new coping skills. Betty and Frank do not have adult children who could possibly share in the tasks of caregiving, but Betty is close to her niece, Josie. She found that talking with Josie reduced her anxiety, helped her feel connected to family again, and allowed her to feel seen and heard. For some, expressing experiences with a spiritual leader such as a priest, imam, rabbi, or sister can provide comfort, a sense of belonging to a greater community, and a deeper connection with a higher power. Expressing your thoughts and emotions in a journal can also be cathartic and revelatory.

Engagement

As I have noted in the past, human beings are social animals. Social isolation and loneliness are significant factors for reduced mental health. [4] According to a 2006 report, 40% to 70% of family caregivers have clinically significant symptoms of depression. [5] Maintaining social engagement is key to reducing caregiver distress.

Support groups designed for caregivers can provide myriad benefits:

• Reduced feelings of loneliness and aloneness.

• Validation of your feelings and self-acceptance.

• Gain understanding about the role of caregiver.

• Learn new coping skills including mindfulness practices, exercise, journaling, and letter writing.

When a loved one’s health declines, so can engaging in activities together. For Betty and Frank, foreign travel is no longer an option. Yet, they found other ways to itch their travel bug, while engaging with others. A picnic lunch under a local park shelter, a day trip to a petting farm, and a dinner out with friends reduced feelings of loss and isolation. Betty found that re-engaging in mindfulness activities provided a pause on all the things that felt overwhelming, if only for a few moments during the day. She finds peace and grounding when practicing qi gong with Mimi Kuo-Deemer; and she enjoys listening to her her favorite podcast, On Being with Krista Tippet while sitting on her front porch.

Empowerment

When one is able to express one’s self and engage with others, a sense of empowerment can grow. The seeds of resilience are within us all. How we nurture our resilience is key to feeling as sense of agency over our lives. A caregiver’s role can also rob one of agency. The self can become a mere mirage, as the needs of the loved one intensify. Identifying the things you do have control over can help you feel empowered to lead a life that also takes you and your needs into account.

As a flight attendant forewarns us to place the oxygen mask on us before assisting another, caregivers need to place their physical needs first. This means making (and keeping!) doctor appointments, annual scans, and follow-ups.

Missing, canceling, or rescheduling medical appointments for the self are three of the top decisions the majority of my caregiving clients make on a regular basis. Our work together helps them recognize their health needs are equal to their loved one’s needs.

Making healthy choices also include what you eat and drink. It can be easy to ignore kitchen duties, if your loved one is on a liquid diet. Skipping meals or eating fast food or processed/prepared freezer meals may appear the easiest route, but you can empower yourself by choosing health alternatives. Harmful effects of eating fast and processed foods may include high cholesterol, kidney and liver damage, obesity, and diabetes. Choosing to eat whole foods, such as vegetables, fruits, legumes, support your health and empower you to make time for yourself.

You may feel drawn to increased caffeine intake due to sluggishness or fatigue. Or you may reach for another glass of wine to reduce the stresses of a long day of caregiving. You can empower yourself to make healthier decisions by replacing caffeinated drinks and/or alcoholic beverages with a variety of interesting (and healthy!) alternatives, including lemon water, herbal tea, and kombucha, to name a few.

In future posts, I will continue to discuss issues impacting caregivers. Whether you are a family member caring for a loved one or a health provider in the field, self-compassion is an important aspect of proactively reducing the risk of compassion fatigue and helping you recognize and accept feelings of anticipatory grief.

Are you experiencing anticipatory grief?

Contact me for a 30-minute consult to discuss how you can incorporate the 3 E’s of self-compassion into your daily life of caregiving.

Notes

[1] Toyama, H., & Honda, A. (2016). Using Narrative Approach for Anticipatory Grief Among Family Caregivers at Home. Global qualitative nursing research, 3, 2333393616682549. https://doi.org/10.1177/2333393616682549

[2] To learn more about the different types of dementia, visit Alzheimer’s Association.

[3] Edemekong PF, Bomgaars DL, Sukumaran S, et al. Activities of Daily Living. [Updated 2023 Jun 26]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2023 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK470404/

[4] Leigh-Hunt, N., Bagguley, D., Bash, K., Turner, V., Turnbull, S., Valtorta, N., & Caan, W. (2017). An overview of systematic reviews on the public health consequences of social isolation and loneliness. Public Health, 152, 157–171. 

[5] Zarit, S. (2006). Assessment of Family Caregivers: A Research Perspective.

* This case study is a composite of hundreds of cases. All personally identifiable information has been removed.

Lisa A. Rainwater, PhD, MA (couns), LCMHC, CCMHC, CGP, CT is the owner of Rainwater Counseling in Winston-Salem, North Carolina, where she provides depth psychotherapy and relational attachment and grief counseling to individuals and couples. She earned a master’s in German Studies from the University of Oregon; a master’s in Counseling from Wake Forest University; and a doctorate in German and Scandinavian Studies from the University of Wisconsin-Madison. Lisa is a Certified Thanatologist through the Association of Death Education and Counseling and is seeking certification in Grief Therapy as Meaning Reconstruction at the Portland Institute for Loss and Transition. She has training in Young-Eisendorf’s Dialogue Therapy for Couples and will be participating in the Jung Discovery Group’s The Last Frontier: LOVING our Opposite Retreat in October. She is currently enrolled in a year-long program, Jungian and Post-Jungian Clinical Concepts, at the Centre of Applied Jungian Studies.