from grief to growth: a caregiver’s journey to healing

“Some things cannot be fixed; they can only be carried. Grief like yours, love like yours, can only be carried.” – Megan Devine

understanding grief

Grief is a natural, multifaceted reaction to loss, encompassing emotional, physical, social, and spiritual dimensions. Loss, however, does not always mean the death of a loved one. It can also include the loss of a role, relationship, independence, or sense of identity. Caregivers, in particular, may grieve the loss of the life they once had, the future they envisioned, or the changes in their relationship with the person they are caring for. These experiences of loss can trigger feelings of sadness, frustration, or even resentment. Recognizing these different dimensions of grief can help caregivers better process their emotions and seek the support they need.

Grief can manifest in several ways:?

• emotional: sadness, anger, guilt, anxiety, relief, or numbness
• physical: fatigue, sleep disturbances, appetite changes, body aches
• social: withdrawal from friends and activities, feelings of isolation
• spiritual: questioning faith, searching for meaning, experiencing existential distress

Each person’s grief journey is unique and influenced by their relationships, cultural background, and coping mechanisms.

the stages of grief

Elisabeth Kübler-Ross introduced the Five Stages of Grief, which provide a framework for understanding responses to loss:

• denial: a sense of disbelief, avoiding the painful reality
• anger: frustration directed at oneself, others, or circumstances
• bargaining: attempting to regain control through “what if” thoughts
• depression: deep sadness as the loss becomes undeniable
• acceptance: gradually finding peace with the reality of existing conditions

These stages are not linear, and individuals may move between them over time. Some may linger in one stage for a long time, while others might skip certain stages altogether. There is no “right” way to grieve, and it is important to allow oneself to move through grief at their own pace without comparison to others.

various forms of grief in caregiving

Caregivers face unique forms of grief due to the anticipatory nature of their role and the evolving dynamics of relationships.

anticipatory grief

Anticipatory grief occurs when caregivers mourn a loss before it happens, such as when caring for a loved one with a terminal illness. This form of grief can lead to:

• emotional exhaustion from prolonged stress
• anxiety about the future
• depression from prolonged sadness and uncertainty

coping strategies:

• acknowledge your emotions without judgment
• seek support from friends, support groups, or therapy
• practice self-care to maintain your own well-being

ambiguous loss and changing relationships

Ambiguous loss occurs when a loved one is physically present but psychologically absent, such as in dementia or severe cognitive decline. This type of loss can make grieving more complex and often shifts relationship dynamics. The evolving caregiving role can create a sense of loss for the past relationship while fostering feelings of isolation.

coping strategies:

• adjust expectations of the changing relationship
• find new ways to connect with your loved one
• communicate openly with family and friends about your feelings
• seek community support to share experiences and build emotional resilience

grieving at death

Even when a caregiver has anticipated the loss, the final moments can bring intense grief. Caregivers may experience a mix of relief and sorrow, along with guilt for feeling relieved.

coping strategies:

• give yourself permission to grieve without guilt
• reflect on the positive impact of your caregiving role
• honor your loved one’s memory through rituals or remembrance activities

For more information on navigating end-of-life care, check out this article.

grief & relief in caregiving

Some caregivers also experience relief after their loved one passes or when their caregiving role comes to an end. This relief can stem from the end of witnessing prolonged suffering, regaining a sense of normalcy, or finally having time to focus on their own needs.

mixed emotions:

• feeling relief does not mean a caregiver loved their person any less—it is a natural reaction to prolonged stress and exhaustion
• the combination of sadness and relief can lead to guilt, making it difficult to fully process emotions
• recognizing that caregiving was an act of love and sacrifice can help caregivers find peace with these emotions

coping strategies:

• accept that feeling relief is normal and does not diminish your love or commitment
• allow yourself to grieve while also acknowledging the challenges caregiving brought
• seek support from others who understand these emotions
• focus on self-care and rebuilding aspects of your life that were set aside during caregiving

complicated grief

While grief is a natural process, some caregivers experience prolonged or intense grief that interferes with daily life, known as complicated grief.

symptoms of complicated grief:

• persistent longing for the deceased
• intrusive thoughts or denial about the loss
• avoidance of reminders or extreme anger
• feeling that life is meaningless

Approximately 6–8% of caregivers experience complicated grief, which can increase risks of depression, anxiety, and even serious health concerns. Seeking professional support is crucial if these feelings persist.

navigating the grieving process

Grieving is not a straightforward journey; emotions fluctuate over time. Here are ways caregivers can navigate their grief:

• acknowledge and express emotions: suppressing feelings can lead to burnout; allow yourself to grieve openly
• seek support: talking to trusted individuals, joining a support group, or seeking therapy can be beneficial
• prioritize self-care: engage in activities that nurture your mental and physical well-being, such as exercise, healthy eating, and rest
• communicate openly: sharing your feelings with family and close friends fosters connection and reduces isolation

the importance of human connection

Even in loss, we are not alone. Grief can feel isolating, but connection is essential for healing. Whether through family, friends, or support groups, finding a community that understands your experience and allowing your story to be heard can help immensely in the grieving process.

narratives in medicine: the power of patient/caregiver stories

Stories have the power to heal, connect, and inspire. In caregiving, hearing from others who have walked similar paths can provide comfort and a sense of solidarity. Below are some powerful stories from caregivers and patients navigating grief and loss:

• It’s Okay That You’re Not Okay by Megan Devine – A compassionate guide on navigating grief without trying to “fix” it.
• Notes on Grief by Chimamanda Ngozi Adichie – A deeply personal reflection on loss and mourning.
• Patrimony: A True Story by Philip Roth – A poignant memoir about caregiving, loss, and a father-son relationship in the face of terminal illness.
• To hear a first-hand caregiver story: Navigating Grief as a Family Caregiver: Challenges & Opportunities – tune in to our latest podcast episode.

Conclusion

Grief in caregiving is a profound and personal experience. By recognizing its forms—whether anticipatory grief, ambiguous loss, or complicated grief—and seeking appropriate support, caregivers can honor both their loved one’s memory and their own well-being. Remember that healing takes time; be patient and kind to yourself as you navigate this journey.

Check out the following articles for valuable insights on coping with grief, navigating ambiguous loss in Alzheimer’s disease, and managing caregiving demands.

Resources

• The Center for Loss & Life Transition (www.centerforloss.com): Offers guidance, books, and support for navigating grief and bereavement.
• What’s Your Grief (www.whatsyourgrief.com): A website with articles, podcasts, and online courses focused on coping with grief.
• National Alliance for Caregiving (www.caregiving.org): Provides research, policy initiatives, and caregiving resources to support family caregivers.
• Family Caregiver Alliance (www.caregiver.org): Offers information, services, and support for caregivers of adults with chronic conditions.
• Alzheimer’s Association Support Groups (www.alz.org): A network of local support groups specifically for those caring for someone with Alzheimer’s or dementia.
• GriefShare Support Groups (www.griefshare.org): Structured support group program for people coping with grief after loss.
• Hospice Foundation of America (www.hospicefoundation.org): Provides education and support for individuals and families.

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Hi, I'm Pooja (or Dr. Patel). With almost a decade of work as an occupational therapist, I now help educate and support family caregivers caring for elders. Join our new community of family caregivers on Circle.so for connection and support. Learn more at aging-together.com.

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This article was written by a capstone student, Maria O'Brien , as part of her day-to-day internship at Aging Together .