Caregiver Grief: Pragmatic Answers to Challenging Questions

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Two recent popular movies delve deeply and movingly into the psychology of grief.

In Train Dreams, based on a novella by Denis Johnson set in the backwoods of early-20th-century Idaho, a logger named Robert Grainier reacts with overwhelming guilt to the forest fire deaths of his wife and young daughter because he wasn’t at home to save them when the flames enveloped their log cabin. At the same time, part of him can’t or won’t accept they are gone; he continues to search the surrounding countryside for signs of them. He becomes profoundly depressed, going through the motions of life without purpose or joy.

Hamnet is based on the celebrated novel by Maggie O’Farrell about the impact the death of their 11-year-old son, Hamnet, has on William Shakespeare and Agnes, his wife. Agnes blames Will for not being at home while Hamnet was in the death throes from the Black Plague. The intensity and persistence of her anger seem to sever any emotional connection between them. She turns inward; he turns toward transforming his grief into art.

Denial, depression, social withdrawal, relationship strain—these are universal effects across time and place of prolonged or complicated grief. They are also some of the possible consequences for family caregivers of distinct types of grieving during caregiving and then afterwards.

During caregiving, caregivers often feel a sense of loss while bearing witness to their care receivers’ decline. For example, they may feel intense sadness while observing, say, a parent with dementia slowly losing their capacity to remember things, reason, and understand, or a spouse who was a competitive marathoner now confined to a wheelchair because of MS. They may blame themselves for their inability to prevent or slow the progression of their care receiver’s condition. They may be hard on themselves, too, for their failure to alleviate their loved one’s emotional or physical suffering.

Although they may be loath to admit it, caregivers also typically grieve the loss of their pre-caregiving lives—the work they did, the social and leisure activities they cherished—as they become consumed with completing caregiving tasks. Usually, they are acutely aware that they were freer and happier before they became caregivers. They may fear losing all semblance of who they were.

After caregiving ends with the death of the care receiver, caregivers grieve their sudden absence. Like Robert in Train Dreams, they may also blame themselves for their loved one’s death or for not being present at the deathbed or for not having said the loving things that they meant to say before it was too late. Like Agnes in Hamnet, they may blame others for not being there when they were needed, or for not caring or doing enough. Like both Robert and Agnes, they may isolate themselves from others, withdrawing into despair. If the caregiver role became, over time, an important part of their self-identity, then they may also grieve the loss of that source of meaning in their lives.

Because different caregivers mourn differently, there is no one way to alleviate grief that applies to everyone. But there are general practices that may be helpful:

1. Whether during or after caregiving, allow yourself to feel whatever emotions arise. Even so-called negative emotions, such as resentment or anger, are within the normal range. Trying to avoid experiencing them by becoming overly focused on caregiving tasks will increase, not decrease, the likelihood of becoming clinically depressed.

2. Accept the inevitability of grieving and set realistic expectations for it. If you are still a caregiver, expect that there will be moments of both joy and sorrow, but the latter will likely increase as your care receiver declines. If you are now a former caregiver, give yourself months or, possibly, one to two years (most often for spousal caregivers) to experience grief about the loss of the care receiver. Don’t judge yourself for being weak or indulgent because you think you should “get over” the death of your loved one sooner than that. For some, grief never really ends, but it does fade in intensity over time.

3. You may be tempted to pull back from social engagements because you simply don’t feel like being among others or are afraid you will burden them with your sadness. Instead, lean into socializing. There are few better ways of managing grief than to be with others who understand and care about you.

4. Mourning rituals have long been found to be essential for coping with grief. After the care receiver dies, take the opportunity to participate in any family or culturally sanctioned ritual, such as a funeral, homegoing, shiva, or wake, that brings together like-minded mourners who can support one another in their common loss

5. Find ways of making the death of the care receiver more meaningful. For example, if that person died of a specific disease, consider contributing to an organization that advocates for research for that condition. Or you could share stories about that person with younger family members to communicate the values that were important to them. Or offer support to other caregivers who may now be going through what you have already experienced, so that you can share the wisdom that you acquired through being a caregiver.