Caring for someone during the long decline of Alzheimer's disease and other forms of dementia means enduring many losses. We aren't just taking care of the people we love; we're simultaneously grieving for them. Social workers call this paradox "anticipatory grief." Dementia caregivers and those who care for the terminally ill are especially vulnerable to anticipatory grief.
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 anyone connected to someone with Alzheimer's, but it's especially common during 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. When 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 -- coping with very real feelings of loss for someone who is still alive
Ambiguous loss -- interacting with someone who's not fully present socially or psychologically
What you can do when anticipatory grief strikes
Know your feelings are natural. 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. Don't 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 called anticipatory grief equivalent in intensity and breadth to the response to death.
Take solace in this odd silver lining: Anticipatory grief prepares us for the end. It's a long, slow, painful adjustment, but it is an adjustment. You can't quantify or compare grief experiences, but some families find sudden losses difficult to deal with because they haven't undergone the subtle emotional adjustments that anticipatory grief allows during a long demise.
Don't try to put a gloss on dementia care. Many caregivers wax poetic about those unexpected "I love you's" or sudden bursts of clarity and gratitude. They're fulfilling and should be embraced. But the rest of the time can be understandably difficult. 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. How to get out of 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 taking a walk or working out.
Rely on a support network for 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. 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.