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Anticipatory Grief and Loss - A Normal Aspect of Caregiving During Alzheimer's

Why It's Normal To Grieve While Your Loved One Is Still Alive, and How to Cope

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Updated October 31, 2008

Photo © Microsoft

Grieving is normal when your loved one is still alive.

Photo © Microsoft
If you're a caregiver, you know that Alzheimer's disease can create many practical challenges such as helping your loved one in the bathroom and keeping him or her safe from falls and wandering. Still, many caregivers state that the hardest part of caregiving is not the practical side -- instead, it's the grief and loss that they feel, even while their loved ones are still alive.

Anticipatory grief is what psychologists call the emotional pain associated with losing a relative that's felt before the relative dies. It's common among caregivers of those with Alzheimer's disease, terminal cancer, and other fatal conditions.

Related to anticipatory grief is ambiguous loss, or the confusing feelings that caregivers have when they interact with their loved ones -- particularly in the later stages of Alzheimer's -- because it seems as though the person is still physically alive but is no longer there mentally or socially.

There is no easy way through anticipatory grief and ambiguous loss. They are difficult yet normal experiences for caregivers of those with Alzheimer's and other kinds of dementia. They may also occur more than once during the caregiving process. For instance, when your loved one has a period of rapid decline, the grief and loss may become more intense, but then the feelings might level off when your loved one stabilizes for awhile. When your relative has another setback, the feelings of grief and loss may return.

Here are some suggestions for working through anticipatory grief and ambiguous loss:

  • Join a support group. Caregiver support groups are wonderful because they put you in touch with others who are going through similar challenges. As much as friends and family members want to help you, they may not understand how you can be grieving while the person you're caring for is still alive. On the other hand, fellow caregivers will understand. Find your nearest support group by contacting your local Alzheimer's Association.

  • Find online support. Try visiting our Alzheimer's Discussion Forum, where caregivers and other concerned people share their stories with each other and offer ideas and support. This is a great option for those who don't feel comfortable with the idea of going to a support group, as well as those who want both kinds of connections.

  • Write it down. Keeping a journal where you can record your thoughts and feelings privately can be very therapeutic. If you don't like to write longhand, try keeping an electronic journal on your computer.

  • Seek professional help. If the previous suggestions don't seem to be helping, consider finding a mental health professional that specializes in Alzheimer's disease, caregiving, and/or grief and loss issues. Try calling your local mental health center or association (listed in the phone book) and ask for a referral.

Most importantly, remember that you don't have to go through this journey alone. Take good care of yourself by reaching out to others -- ultimately, it will help both you and your loved one.

Sources:

Alzheimer's study: Grief is heaviest burden for caregivers. University of Indianapolis. March 6, 2008. http://www.uindy.edu/news/?p=577

Mace, N. L., & Rabins, P. V. 2006 The 36-hour day: A family guide to caring for persons with Alzheimer's disease, related dementing illnesses, and memory loss in later life. New York: Warner Books.

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