Anticipatory Grief: How to Cope With the "Living Death" of Alzheimer's

For many caretakers, daily care isn't the worst part of dealing with Alzheimer's or other dementias. Grief is.
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What is anticipatory grief?

Anticipatory grief is the emotional pain of losing a loved one, felt in advance of the person's death. It's a common phenomenon among those who care for the terminally ill.

It may be experienced at any time by any one connected to someone with Alzheimer's, but it's especially common at the middle and late stages of the disease.

Why Alzheimer's caregivers are vulnerable to anticipatory grief

Good-byes are always painful, and Alzheimer's is the ultimate "long good-bye." Anticipatory grief is rampant, and perhaps inevitable, among Alzheimer's caregivers because of the slow, progressive, and incurable nature of the disease. University of Indianapolis researchers asked more than 400 caregivers the open-ended question, "What would you say is the biggest barrier you have faced as a caregiver?" The majority -- more than 80 percent -- referred to the loss of the person they used to know.

The friends and family of someone with dementia experience two difficult psychological states at once:

  • Anticipatory grief, or coping with the very real feelings of loss for someone who is still alive
  • Ambiguous loss, or interacting with someone who's not fully present socially or psychologically

That's a tough mix. Little wonder that more than a quarter of all dementia caregivers suffer from depression. They're in mourning even as they're still doing the hard work of taking care of someone with a difficult disease. Depressed caregivers, more than other depressed people, tend to display symptoms that center on sadness, lack of hope, and guilt.

What you can do when anticipatory grief strikes

  • Know that your feelings are normal. It can help simply to know that anticipatory grief exists. Just because the person you're caring for still lives doesn't mean you don't get to show dark emotions. There's no need to feel guilty for experiencing these difficult feelings. Nor should you hold them in.
  • Understand that it's "real" grief. A 2001 study in The Gerontologist deemed anticipatory grief equivalent in intensity and breadth to the response to death. The odd silver lining: anticipatory grief prepares us for the end. It's a long, slow, painful warm-up, but it's a warm-up, nonetheless.
  • Don't try to put a gloss on dementia care. Many caregivers wax poetic about those unexpected "I love yous" or sudden bursts of clarity and gratitude. They're fulfilling and should be embraced. But the rest of the time -- well, there's the rest of the time. Don't beat yourself up if you struggle with some aspects of caregiving.
  • Be nice to yourself. Grief (anticipatory or otherwise) puts you at risk for depression. Depression puts you at risk for dementia yourself. How to end this vicious cycle? Start small -- enlist a regular volunteer or paid aide to take over while you do something positive for your own health, such as working out.
  • Rely on a support network for an emotional outlet Long-term studies have found that Alzheimer's caregivers who receive counseling and support, formal or informal, have better health and a lower incidence of depression. You may feel the need to put on a "brave face" in front of the sick person all the time, when expressing your conflicting feelings is what would serve you better. A support network lets you do this. Venting on paper -- writing about your feelings -- can help during those moments when you can't see someone face to face.
  • Tap into hospice care . Enlisting hospice help as the person in your care descends into end-stage Alzheimer's isn't, as some people mistakenly believe, a secret death wish. You can't control the timing of the end. But it does come eventually, and you deserve the skilled guidance that experts in this passage can offer you, even if it's still months (or more) in the unknowable future.

Paula Spencer Scott

Paula Spencer Scott is the author of Surviving Alzheimer's: Practical Tips and Soul-Saving Wisdom for Caregivers and much of the Alzheimer's and caregiving content on Caring. See full bio