Caregiver Stress: The Emotional Burden of Caring for a Terminally Ill Loved One

Caring for someone who is approaching the end of life can be an experience of profound love and profound strain. Family caregivers may find themselves coordinating appointments, managing medications, helping with personal care, communicating with healthcare providers, and trying to remain emotionally present for someone they love. At the same time, they may be trying to continue working, caring for children, maintaining relationships, and managing the ordinary responsibilities of everyday life.

The emotional impact can be difficult to recognize because caregivers often focus so heavily on the needs of the person who is ill. Research involving family caregivers of people with advanced cancer has identified significant psychological and practical burdens, as well as unmet support needs (Alam et al., 2020). These challenges are not evidence that someone is failing as a caregiver. They are understandable responses to a demanding and often uncertain situation.

At Authentic Living London, we believe caregivers deserve care and support as well. Counselling can provide a place to talk honestly about what this experience is like, including emotions that may feel difficult to express elsewhere.

The Changing Role of a Caregiver

Becoming a caregiver can change a relationship in ways that are both practical and emotional.

A partner may find that a relationship that once centred on companionship and shared responsibilities increasingly involves caregiving. An adult child may suddenly find themselves making decisions or providing intimate physical care for a parent who once cared for them. Other family members may take on responsibilities they never expected to have.

These changes can affect a person's sense of identity and can create complicated emotions. Love, sadness, frustration, gratitude, fear, and exhaustion can exist at the same time.

Caregiving can also involve uncertainty. The person's needs may change as their illness progresses, requiring caregivers to continually adapt. Research suggests that caregiver wellbeing is influenced not only by the amount of care being provided but also by factors such as the patient's symptoms, the caregiver's psychological wellbeing, the relationship between caregiver and patient, and the resources available to the family (Alam et al., 2020).

Grief Can Begin Before the Loss

When someone you love is approaching the end of life, grief does not necessarily wait until death.

Recent research has increasingly distinguished between different forms of grief that can occur before a death. A systematic review of 134 studies proposed distinguishing anticipatory grief, which involves separation distress and concern about a future without the person, from illness-related grief, which involves mourning the losses that are already occurring as illness progresses (Singer et al., 2022).

For caregivers, these losses may include changes in the person's health, personality, independence, abilities, routines, or role within the family. There may also be grief for experiences that will no longer happen in the way they were once imagined.

A 2021 systematic review found that higher levels of pre-loss grief and lower perceived preparedness for death were associated with poorer adjustment after the death of a loved one, although the researchers also noted that the concepts of pre-loss grief and preparedness have not been measured consistently across studies (Treml et al., 2021).

This is one reason support before a death can be important. Caregivers do not have to wait until bereavement to seek emotional support.

The Emotional Weight of Caregiving

Caregivers can experience a wide range of emotions as they navigate the final stages of a loved one's illness. Anxiety may arise from uncertainty about what will happen next. Sadness may accompany changes in the relationship or the anticipation of losing someone. Guilt can emerge when caregivers feel they are not doing enough, become frustrated, or need time away from caregiving.

There can also be emotions that people feel uncomfortable admitting. A caregiver may experience resentment, anger, relief when someone else takes over for a few hours, or even relief when a difficult situation finally comes to an end. Having these feelings does not determine how much someone loves the person they are caring for.

Research suggests that psychological distress among family caregivers can be substantial, particularly in the context of advanced illness. A systematic review of family caregiving in advanced cancer found that factors associated with adverse mental health outcomes included the patient's declining condition, symptom distress, and difficulties understanding the prognosis (Alam et al., 2020).

Rather than judging these emotions, counselling can provide a place to understand where they are coming from and how they are affecting you.

The Physical and Practical Demands of Caregiving

End-of-life caregiving can involve substantial practical responsibilities. Depending on the person's condition and available services, family members may help with mobility, personal care, meals, medications, appointments, symptom monitoring, and communication with healthcare professionals.

These responsibilities can become particularly difficult when caregivers are trying to manage them alongside employment, parenting, household responsibilities, and their own health needs.

Recent research examining caregivers in home-based palliative care has identified patient needs and disease progression alongside caregiver wellbeing, role restrictions, logistical issues, finances, and care arrangements as factors associated with caregiver burden (Alam et al., 2020; Yan et al., 2024).

The practical circumstances surrounding caregiving therefore matter. When someone is struggling, the answer may not be simply to become more resilient or practise more self-care. Sometimes the most helpful intervention is additional practical support, respite, palliative care involvement, or assistance with specific caregiving responsibilities.

When Caregiving Affects Social Relationships

Caregiving can also change a person's social world.

Time and energy that once went toward friendships, work, recreation, or community activities may increasingly be directed toward caregiving. Friends may not know what to say, while caregivers may decline invitations because leaving home feels difficult or because they are simply too tired.

Family relationships can become complicated as well. Different relatives may have different ideas about treatment, caregiving responsibilities, or how decisions should be made. One family member may feel that they are carrying more of the practical responsibility than everyone else.

These circumstances can contribute to loneliness and conflict at a time when social support is particularly important.

Research examining family caregivers of people with advanced cancer emphasizes the importance of assessing caregivers as part of the wider unit of care rather than focusing exclusively on the patient (Alam et al., 2020).

Financial and Work-Related Stress

The consequences of caregiving are not limited to emotional and physical strain. Caring for someone with a serious illness can also affect employment and finances.

Some caregivers reduce their working hours, take time away from work, or leave employment altogether. There may also be expenses associated with transportation, medications, equipment, home modifications, or other aspects of care.

These pressures can compound emotional distress. A caregiver may already be worried about their loved one's health while simultaneously wondering how the family will manage financially.

For this reason, caregiver support should extend beyond emotional coping. Palliative care teams, social workers, community organizations, and other services may be able to assist with practical needs and help families identify available resources.

Existential Questions and Meaning

The approach of death can also bring existential questions to the surface.

Caregivers may find themselves thinking about mortality, spirituality, suffering, fairness, purpose, or what life will look like after the person dies. These questions can be particularly difficult when previous beliefs no longer provide the same sense of certainty.

A 2024 systematic review and meta-analysis found that approximately one-third of family caregivers of people with advanced cancer experienced high levels of existential distress. Death anxiety, loneliness, hopelessness, emotional unpreparedness, and pre-loss grief were among the concerns identified in the research (Walbaum et al., 2024).

For some people, spirituality or faith provides comfort. Others find meaning through relationships, memories, creative expression, nature, or simply being present with the person they love. There is no single framework that works for everyone.

Counselling can provide a space to explore these questions without requiring a particular answer.

Caring for Yourself While Caring for Someone Else

Caregiver support is sometimes reduced to the phrase "self-care," but the reality is more complicated.

Taking a walk, getting enough sleep when possible, maintaining social connections, and making time for meaningful activities can all be valuable. At the same time, caregivers cannot always solve structural problems through individual self-care. If someone is providing round-the-clock care without sufficient assistance, telling them to simply take more time for themselves may feel unrealistic.

What can be more helpful is looking at the whole situation. What responsibilities are you carrying? Which ones genuinely need to be yours? Where might family members, healthcare providers, community services, or palliative care be able to assist?

Research suggests that psychosocial interventions can reduce caregiver burden, although the effects vary and may diminish over time. A 2022 systematic review and meta-analysis of 50 randomized controlled trials found that therapeutic counselling and skills-based interventions were associated with reductions in caregiver burden immediately after treatment, while longer-term evidence was less consistent (Applebaum et al., 2022).

Support therefore does not have to take one particular form. Sometimes it means counselling. Sometimes it means practical assistance. Often, caregivers benefit from a combination of supports.

Finding Meaning in the Relationship

Even during an extraordinarily difficult period, caregiving can contain moments of connection.

A conversation, a familiar song, looking through photographs, sharing a meal, holding someone's hand, or simply sitting together can become meaningful. These experiences do not make caregiving easy, nor do they cancel out the difficult emotions that accompany it.

For some caregivers, being able to participate in the person's care provides a sense of purpose or closeness. For others, caregiving may feel primarily exhausting. Both experiences can be true.

The aim is not to force meaning or positivity onto a difficult situation. It is to make room for the full experience of caring for someone you love.

How Counselling Can Help Caregivers

Counselling can offer caregivers a place where the focus is finally on them.

Therapy may provide an opportunity to talk about grief before the death occurs, process difficult emotions, navigate changing family roles, and consider how caregiving has affected your own identity and relationships. It can also help you recognize when expectations you have placed on yourself are unrealistic or when additional support may be needed.

For some caregivers, counselling becomes a place to work through guilt or resentment. For others, the focus may be anxiety, depression, anticipatory grief, family conflict, existential concerns, or preparing emotionally for bereavement.

Evidence from psychosocial intervention research suggests that targeted support can improve some caregiver outcomes, although no single intervention is appropriate for every caregiver (Applebaum et al., 2022; Liu et al., 2024).

The therapeutic relationship itself can also provide something that caregivers may have very little of during this period: a place where they do not have to be the person responsible for everyone else.

Support Can Begin Before the Loss

One of the most important messages for caregivers is that support does not have to wait until after the death.

Pre-loss grief can be significant, and research suggests that caregivers experiencing high levels of pre-loss grief or feeling unprepared for the death may be at greater risk for difficulties following bereavement (Treml et al., 2021).

Seeking counselling before a death can therefore be one way of creating space for the emotional realities of caregiving while they are happening. It can also provide an opportunity to discuss concerns about the future and consider what support might be needed during bereavement.

You Deserve Support, Too

Caring for a terminally ill loved one can be one of the most meaningful and demanding experiences a person ever faces. Love may be at the centre of the experience, but love does not make the practical, emotional, physical, financial, and existential demands disappear.

If you are caring for someone who is approaching the end of life, counselling can give you a place to speak honestly about what you are experiencing. You can explore grief, anxiety, guilt, anger, exhaustion, family dynamics, or questions about what comes next.

At Authentic Living London, Jeanette Leroux, MSW, provides counselling related to end-of-life concerns, including anticipatory grief, MAID-related issues, depression, life review, and concerns associated with aging. She offers a compassionate space for caregivers and family members who are navigating the complicated emotions that can accompany serious illness and impending loss.

If you would like to explore whether counselling might be helpful, contact Authentic Living London to book a free 15-minute discovery call. You can also call or text 226-224-0301 and our team can help you determine which therapist may be the best fit for your needs.

References

Alam, S., Hannon, B., & Zimmermann, C. (2020). Palliative care for family caregivers. Journal of Clinical Oncology, 38(9), 926–936. https://doi.org/10.1200/JCO.19.00018

Applebaum, A. J., Breitbart, W., & others. (2022). The efficacy of psychosocial interventions for cancer caregiver burden: A systematic review and meta-analysis of randomized controlled trials. Clinical Psychology Review, 96, 102237. https://doi.org/10.1016/j.cpr.2022.102237

Liu, X., Jiang, L., Peng, X., Xu, L., Huang, L., & Wan, Q. (2024). Evaluating the effects of dyadic intervention for informal caregivers of palliative patients with lung cancer: A systematic review and meta-analysis. International Journal of Nursing Practice, 30(5), e13217. https://doi.org/10.1111/ijn.13217

Singer, J., Roberts, K. E., McLean, E., Fadalla, C., Coats, T., Rogers, M., Wilson, M. K., Godwin, K., & Lichtenthal, W. G. (2022). An examination and proposed definitions of family members' grief prior to the death of individuals with a life-limiting illness: A systematic review. Palliative Medicine, 36(4), 581–608. https://doi.org/10.1177/02692163221074540

Treml, J., Schmidt, V., Nagl, M., & Kersting, A. (2021). Pre-loss grief and preparedness for death among caregivers of terminally ill cancer patients: A systematic review. Social Science & Medicine, 284, 114240. https://doi.org/10.1016/j.socscimed.2021.114240

Walbaum, M., et al. (2024). Existential distress among family caregivers of patients with advanced cancer: A systematic review and meta-analysis. Psycho-Oncology. https://doi.org/10.1002/pon.6239

Yan, Q., Zhu, C., Li, L., Li, Y., Chen, Y., & Hu, X. (2024). The effect of targeted palliative care interventions on depression, quality of life and caregiver burden in informal caregivers of advanced cancer patients: A systematic review and meta-analysis of randomized controlled trials. International Journal of Nursing Studies, 160, 104895. https://doi.org/10.1016/j.ijnurstu.2024.104895