Anticipatory Caregiver Grief- Nov 09

I attended a local Parkinson’s Disease caregivers support group meeting a few months ago. The group leader handed out this Dear Abby column on anticipatory caregiver grief (dated 9/24/09).


DEAR ABBY: I am responding to “Alone But Happy in Canada” (July 12), who feels guilty because she feels relieved following the death of her husband from a long, difficult illness.

Everyone grieves differently, but I don’t think grieving a loved one’s loss BEFORE his or her death is uncommon. I’ve known several people who watched loved ones wither away into helpless, needy and miserable individuals. I can’t think of one who didn’t feel the same as “Alone But Happy.”

I have begun referring to it as “grieve-as-you-go guilt.” A person grieves through the decline and eventual demise of a beloved mate, and when she fails to feel sadness, she substitutes guilt where she believes her grief should be. But actually she has been grieving all along, and needs to acknowledge that fact. Only then will she be able to enjoy not only her clean house, but her clear conscience as well. — AZY IN WASHINGTON

DEAR AZY: You have keen insight. Other readers wrote wanting to offer reassurance to “Alone But Happy.” Read on:

DEAR ABBY: Your answer to “Alone” was appreciated by all caregivers, I’m sure. Nobody knows, unless they have walked that particular path, how difficult and lonely it is to watch a spouse disappear over a long time, losing the history you share together, making hard decisions alone, and rebuilding an identity not tied to the past. Every morning brings a new bout of grief from the moment of wakening — every day another day you don’t want to face.

Keeping healthy and planning ahead for yourself, not as a caregiver but as a participant in the “real world,” is the only way to maintain sanity sometimes. Though I love my husband dearly, I look forward to having a life again that is not centered on his disease. No one should be made to feel guilty for restarting life when he or she has given so much. — DAY AT A TIME

DEAR ABBY: I also lost my husband of 35 years just a month ago. He endured several years of health problems and as his caregiver, I, too, felt a great sense of relief with his passing. I do not, however, feel guilty about it.

I realize that I have been grieving for several years already, as I knew this time would be coming. In many ways it is as if I am in the final stage of the process even though my husband’s death has only just occurred.

Our son put it best when he said at my husband’s bedside, “I lost my dad several years ago, but my father died tonight.” He, too, understands that his grief began a long time ago. — MOVING FORWARD

DEAR ABBY: Having to put another person’s needs and wants before one’s own can be very stressful. Not everyone is able to do that and stay pleasant and patient at all times. Fortunately, I found a local caregivers’ support group. Our weekly meetings help us see that we are not alone in experiencing the trials and tribulations of family caregiving.

For those who are laboring to do their best for their sick or disabled loved ones, let me suggest they find a Senior Information and Assistance office in their area. Another resource is the National Family Caregivers Association (; phone (800) 896-3650). These may be helpful in allowing caregivers mental and physical relief by connecting them with hourly in-home care services.

It is important that people experiencing this kind of stress get respite time to themselves, away from their care recipient, in order to be able to keep on helping them. — ONE OF THE MANY

Dear Abby is written by Abigail Van Buren, also known as Jeanne Phillips, and was founded by her mother, Pauline Phillips. Write Dear Abby at or P.O. Box 69440, Los Angeles, CA 90069.