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The grief nobody talks about

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1) The loss of a person we once knew

Sometimes, the people you love change in significant ways. They are still in your life—but not in the way you remember or once knew them. Illness often changes people, especially mental illness or dementia. In dementia, a person is still with us, but is not like the person we knew. The ties that bind us to one another, the shared memories and even the personality are no longer accessible.

Sometimes, the changes can be startling. The mother of one of my clients grew up in the segregated South. Yet her daughter was proud that her mom had been active in the civil rights movement, even though her mom lost friends and alienated family. Her mother would proudly tell the story of how, as an adolescent girl, she shamed her all-white church into integrating services. Yet, as her mom lapsed into dementia, she began using racial epithets. Her mother’s language not only shocked her daughter but also called into question her mom’s true beliefs. Was her mother really the progressive person she believed her to be?

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Other illnesses can create a similar sense of loss. A traumatic brain injury generally affects all levels of mental function. We may grieve people as they sink into mental illness, alcoholism or drug use. Positive changes can also engender grief, when a person becomes different from the individual we knew and loved. For Tristan, it was the religious conversion of his brother. He was initially delighted that his brother found some faith, even if it was more intense than his own beliefs. But Tristan soon found it difficult to relate to his born-again brother who no longer wanted to share a beer and was always witnessing to Tristan and his family.

2) The loss of a person we haven’t yet lost

Anticipatory grief is a term that refers to the grief felt about someone with a life-limiting illness; friends, family and caregivers often experience it in anticipation of an eventual death. These losses are significant. The loss of health—even the prediction of loss—contained in a diagnosis can be a source of grief not just for the person diagnosed, but also for his or her loved ones. We lose our assumptive world. All our plans, thoughts, our sense of the future— even our sense of safety and security—are now challenged. The future we know is not the one we once imagined. For Craig, his wife’s diagnosis of pancreatic cancer dashed their retirement dreams of travel and possibly relocating to Tuscany. As any illness progresses, we continue to experience additional losses and grieve each one.

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3) The loss of the person we used to be

On the second day of school, [while] waiting for the school bus with my grandchildren recently, I heard a young neighbour complain to his mother that he went to kindergarten yesterday! His mom patiently explained that he would now go five days a week to kindergarten— instead of his two-day-a-week preschool. The boy looked at her with disappointment, tears in his eyes. This changes everything! He complained.

It does. Everything changes as you age. Some changes you take in stride, but others affect you deeply. Consider the birth of a child. You may have anticipated this event for years and be overjoyed. But you also know life will be different now; over the next couple of decades, your own freedom will be limited— and for a shorter period, so will your sleep.

Each transition in our lives— no matter how positive—has an undercurrent. The thrill of passing your driving test and earning your license held so much meaning, a mark both of accomplishment and maturity that promised new freedom and adventure. Now, imagine the pain and grief when, through age or disability, you are forced to surrender that license and all it has meant.

Remember: Grief is not always about death, but it is always about attachment and separation. Often, people endure pervasive and intense distress without having faced the death of a loved one at all. Further, in these cases of unrecognised losses, our grief is often not recognised by others, either. But you can grieve the loss of anything, anywhere or anyone to whom you had become attached—no list could name all the possibilities.

To deal with the sorrow, you may need to find confidants, counsellors and support groups that can assist you. Above all, you need to have your grief acknowledged. Allowing yourself to understand the validity of your emotions is the only way to begin feeling better. You are not the only one to have mourned in these situations— and you are not alone.

This adapted excerpt was taken from Grief Is a Journey, by Kenneth J. Doka, PhD published on www.oprah. com

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