It’s painful, complicated, overwhelming and handled so differently by each individual.  When we lose someone or something, the process for coping and healing can be all-consuming.  While we typically equate grief with funerals or sympathy cards, it is also possible to mourn the loss of someone very much alive.

Whether it’s your mother battling dementia, a close friend suffering dramatic effects from a brain injury, or your child fighting addiction, there is an emotional process behind the feelings of loss for the person you know and love, and the person they have become, because of their disease or disorder.  Though they may be present physically, their diagnosis may have caused changes to the person they once were and the dynamics of your relationship with him/her. As a result, it is both the person living with the condition AND those around them that can feel strong feelings of grief and loss.

“Witnessing dementia in a parent is one of the hardest things we face as adults. We see our former caretakers become dependent and disabled, often over a long period of time. Even in the early stages of the disease, we confront the vulnerability of someone who at one time we viewed as strong and powerful. The emotional consequences for adult children can seem endless and overwhelming,” says Tamara McClintock Greenberg, Psy.D., M.S., associate clinical professor of psychiatry at the University of California, San Francisco.

What is Ambiguous Loss?

Coined and pioneered by Dr. Pauline Boss, a thought leader in the interdisciplinary study of family stress, there is a term for this type of grief – ambiguous loss – and it happens as a result of seeing the person we once held dear become someone else. 

Unlike anticipatory grief, which is the normal mourning that happens when a patient and his/her family is expecting death, an ambiguous loss means that our loved one is physically here, but because of reasons such as addiction, dementia, traumatic brain injuries or mental illness, is psychologically gone.

“Ambiguous loss makes us feel incompetent. It erodes our sense of mastery and destroys our belief in the world as a fair, orderly, and manageable place,” says Dr. Boss.

This video gives a personal insight into ambiguous loss:

Tips for Managing Your Grief

Author, Vicki Harrison said, “Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.”

Like grieving someone who has passed away, grieving one still physically present manifests itself differently for everyone.

According to Dr. Boss, “If we learn to cope with uncertainty, we must realize that there are differing views of the world, even when that world is less challenged by ambiguity . . . If we are to turn the corner and cope with uncertain losses, we must first temper our hunger for mastery. This is the paradox.”

Here are a few tips to help ease the effects of ambiguous loss as it pertains to your loved one battling a brain disease or disorder.

1. Feel your grief.

Grief is a roller coaster of emotions, so be gentle with yourself as you ride the ups and downs.  The healing process will never take shape if you don’t face and feel whatever comes your way.

Glenn Brynes, Ph.D. says, “When someone we love is gone from our lives, it is as if a piece of us has been torn away. The loss rends the fabric of our lives and the wound must be repaired. Grief is the process by which our minds heal this hurt.”

2. Hold your memories close.

While living in the past won’t change the current situation, cherished memories do make the past ever-present.  It’s ok to remember the person he or she once was as a way to help you see beyond the person they have become. It will reinforce the idea that your loved one is still the same person, but suffering from something beyond their control.

3. Accept the new normal.

In holding onto memories, as time presses forward, you will eventually have to accept the changes that have occurred in your loved one and your relationship.  While it may take time to reach the point of acceptance, you will find that it’s a crucial part of the process and learning to cope with how life and your loved one have changed.

A part of this acceptance may also mean focusing on gratitude, staying present and not thinking too far ahead into the future

4. Practice self-care.

Grief can be all-consuming.  Whether it’s exercising, having a massage, or indulging in a special meal, make yourself a priority!  Being conscious of your emotional and physical state will sustain you throughout the process and give you the strength to forge on and face your grief.

5. Seek support.

Kristi Hugstad, author, speaker, certified Grief Recovery Specialist, and host of “The Grief Girl” show says, “Grieving the living can be a lonely, isolating process because often, the support system you receive when a loved one dies isn’t there; people don’t understand or relate to your loss the way they would if a funeral was involved.”

While some may not be able to understand your grief, the process of healing will never occur without open and honest communication.  Sharing your feelings with your trusted inner circle or even a professional will help suppress that pain involved with this type of loss.

While the grief you might feel for someone still alive can be painful and isolating, remember that this is a process that will take time and patience.  Some days may be harder than others. We encourage you to give yourself time and space to feel whatever emotions come your way. and know that what you’re feeling is normal.

Visit The American Counseling Association for grief and loss resources.


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