Understanding the Role of the Caregiver

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Reader’s Question

Why do some people put 100% into caring for a sick family member, friend, or even a pet, at the expense of living their own life? E.g., giving up school, advancement at work, or personal relationships in order to care for a parent or pet full-time, while other people seem to be able to find balance when caring for others. Why are some people able to do their best caring for another while still living a productive life, while other people give it their all, and sacrifice having a healthy, happy, balanced life?

Psychologist’s Reply

This is a big question that covers a lot of territory. Illness, death, and dying are subjects to which this short answer cannot possibly do justice, but I hope to give some insight into the stressors faced by those placed in the role of the caregiver.

As you noted in your question, for every ill person or pet there is often a newly-minted caregiver. Very few people I have worked with have felt prepared for the sudden load of both practical responsibility and devastating emotions that come with becoming a caregiver. In addition, each unique caregiver brings their own psychological, physical, and financial health into their new role. A not-at-all comprehensive list of such factors would include:

  • Is this their first time facing death?
  • Do they have a traumatic history involving many losses?
  • Is there a support system available to them?
  • Do they have the personal knowledge and resources to reach out for help?
  • Are they financially stable enough to absorb the monetary strain of their loved one’s care?
  • Are they facing a loss of financial support and lifestyle maintenance as well as the death of their loved one?
  • Are they also caring for others at the same time, such as children or an aged parent?
  • Are they or the loved one struggling with a mental illness?

Your question suggests to me that you are frustrated with someone in your life who has thrown themselves completely into their caregiving role, in your opinion sacrificing a “healthier” balanced lifestyle. However, I think this approach ignores the grief that many caregivers are experiencing. For some, the sacrifice of their “healthy” life is an acceptable tradeoff for reducing future guilt over not having done enough after their loved one is gone. More objective observers, such as friends or psychologists, are right to encourage caregivers to engage in self-care; however, we must always remember that unless we are able to validate the caregiver’s feelings of grief, they are unlikely to be able to hear us or feel understood.

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Many people find Elisabeth Kübler-Ross’s Five Stages of Grief to be a useful model for understanding how people work their way through the grieving process:

We attempt to restore order to our world by attempting to reject this sudden and devastating change.
Anger is an empowering emotion, often masking our sense of helplessness, hopelessness, and sense of abandonment.
We feel guilty and cannot help thinking about “what if” and “if only”, finding fault in ourselves in an attempt to feel some control.
We fully experience the devastation of the loss we are facing.
We accept the reality of the loss and work to operate in our new, changed world.

Note that ‘Acceptance’ does not mean that someone is somehow ‘okay’ with the reality of the loss, only that they accept it and move forward with their lives. As caregivers are all different, so too is the way in which they process their grief. Some, as you noted, are able to continue to function as usual despite their new responsibilities and impending loss; others feel the need, or are required by circumstances, to change their entire lives to accommodate caregiving. The caregiving role incorporates enormous strains on resources, emotions, and time. It is important not to harshly judge people for intense caregiving; a more helpful approach might be to validate the enormity of their role and ask about how they are coping.

The Hospice Foundation of America has many useful resources for caregivers, as well as those looking to understand more about the caregiver’s role. One way to evaluate the toll caregiving is taking on an individual is to use their Caregiver Self-Assessment Questionnaire. If you have a friend who is not able to objectively speak about caregiving, perhaps encouraging them to think about these questions will help move the conversation forward and motivate them to increase self-care or seek out additional resources.

I’d like to leave you with this thought: There is no ‘correct’ way to grieve. Caregivers do best when they have access to a personal support system and practical resources, so if you see someone in your life who is deeply involved in caregiving, you can help them best by supporting them as they grieve in their own way. If they feel understood and respected, they are more likely to hear any good advice you might have to offer on improving their self-care.

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