Anticipatory Grief: my daughter’s fate

Dear Dr. Neimeyer,

If you have been experiencing anticipatory grief for a loved one, once they die do you still experience normal grief? Or is it all combined within the anticipatory? I have a daughter who is a medical guinea pig, and as far as we can tell she is the oldest surviving person in Australia to have had corrective surgery on transposition of the great arteries. Due to the form of surgery we have been told that she will have a massive heart attack before she is forty, and she turns thirty this year. I have tried not to dwell on this too often, but as I am doing my degree for Counselling and I am covering the course of Grief and Loss it has been a constant with me.

Victoria

Dear Victoria,

What a hard path your family has had to walk for what I presume has been the majority of your daughter’s life.  And like so many families with a member facing a grave and uncertain health risk, it is very likely a path walked with great anxiety that spikes at times of symptoms, medical assessments, and procedures, and likely diminishes during periods of more normal functioning.  But I imagine that it never truly goes away, hovering somewhere at the edge of awareness for you, for her, and for others who love her, even during periods of relative calm.  Susan Roos writes about this in her eloquent book, Chronic Sorrow, which describes well this normal reaction to an abnormal circumstance:  a living loss without clear boundaries, that continues to shadow one’s life.

And of course you are apt in describing your response as a form of anticipatory grief, as you acknowledge the hard reality that you could well outlive your precious child.  As real as this grief is, it is unlikely to eliminate the grief that could follow her actual death, if indeed she does predecease you.  It could, however, blunt some of the shock that complicates premature loss, and most importantly prompt you now to treasure moments together, speak honestly and compassionately with one another and other family members about things of importance, and generally strive to live in a way that minimizes regrets and missed opportunities.  Our research and experience with families anticipating loss further teaches us that those families who cultivate social support for their grieving, who are comfortable with intimacy and closeness, who are able to make sense of the loss, perhaps even in medical terms, and who draw on a consistent spiritual or philosophical frame of reference prior to the loss are at less risk of complicated grief during bereavement.  Your outreach for support and understanding, evident even in your writing to me, suggests that you are pursuing a healthy path even in the shadow of a threatening illness.

Dr. Neimeyer

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