GRIEVING DISCUSSION BOARDS > Caregiver Support Discussion

When does our grief begin?

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Just when does our grief begin?

We expect to experience grief following the physical loss of a person we love. But for many of us, grieving begins with the discovery that our loved one has a life-threatening illness. Or grief begins as our loved one?s personality slowly changes or as he or she begins to gradually decline in health and ability. In other words, grieving often starts with psychological loss, the loss of companionship, with the loss of hope in a long-term future with a loved one. So for those of you who are dealing with grief as you care for your loved one, this is your web site.

If you are caring for someone with a serious, life-threatening illness, you have probably experienced a series of losses, occurring with each stage of decline in his or her health. Pauline Boss, in her book Ambiguous Loss: Learning to Live with Unresolved Grief (1999: Harvard University Press), uses the term "ambiguous loss" to describe a loss that is incomplete or uncertain. This type of loss often immobilizes families, blocking their ability to cope with grief or solve problems.

It is not unusual for a caregiver to feel confused and helpless when a loved one is present in one sense?yet seems absent in another. As a caregiver, you may face uncertainties in the changing family relationships and important decisions before you. Maybe you need more information about your loved one?s condition, better communication with family members, or more support from community.

Loss and grief are among the topics we fearlessly take on at our Continuum Hospice Care Roundtable for Families. The Roundtable, a caregiver support group which I facilitate, is accessible by telephone, face-to-face at several locations and online.

If you are feeling alone, allow this site, as well as the other Roundtable resources to be a support to you. They are open to all?not for Hospice families only. For an introduction to Roundtable for Families, visit .

So, let?s start a conversation. Are you an active caregiver whose loved one is physically present but starting to feel absent? Will you share your experience of grief?did it begin unexpectedly? How does grief show up in your life ?and what helps you to hold on?

Dawn Smyer, Psy.D., M.Div.,
Caregiver Services Coordinator
Continuum Hospice Care

I think grief indeed begins from the moment a loved one receives a diagnosis of life-threatening condition.  I wonder which is more painful:  dealing with a quick (no advance warning) death of a loved one without the benefit of having said "good bye", or having to say "good bye" every day to a loved one who continues to live - though sick, on hospice, in hospital, etc. 

As a hospice patient for an entire year, I had the opportunity to witness the grief of my caregivers as well as dealing with my own grief.  (Yes, one grieves for oneself just before anticipated death.)  Furthermore, from the patient's point of view, self grief and witnessing the grief of caregivers are additional health symptoms to deal with.  I certainly appreciated the opportunity to participate in the grief of loved ones, but at the time felt that it would have been helpful to participate in a round-table discussion with them.  Grief is not one-sided, and simply expressing love and concern for each other is not enough for either side to deal with such impending sorrow.  Perhaps grief counseling to both patient and caregiver together is appropriate in certain conditions where the patient is lucid and involved.  That being said, just because a patient is not lucid is not a reason to assume they are not affected by a) their own grief b) the grief of their caregivers  and c) the guilt they feel for causing such grief in the first place!  I believe that the problem has to be addressed to patient and caregiver together, since these are overwhelming emotions that affect both.

Mary Frances:

I think grief begins with the acknowledgement of an impending loss.  Because we so ofter hold fast to hope and live in denial of what is in front of us, the beginning of grief is often a measure of our ability to accept reality. 

In my case, I experienced grief when my mother became disabled after brain surgery and could no longer participate in many family events.  Because this was a time before the needs and rights of the disabled were recognized, a shroud of shame settled over the entire family.  Still, there were good times with the family and my mother participated as well as she could but she started to become more fragile and forgetful.

Finally, there came a time when she could no longer be cared for at home and had to live in a nursing home.  I grieved for her loss of the familiar homestead, I grieved because she so clearly didn't understand why she had to live in this strange place.  I grieved when she no longer knew who I was but ever polite, she tried to cover it up.

Finally, when she passed away, I found that I grieved in a new a different way and was surpriised because I thought I had released her several years before.

Now that she has been laid to rest for more than four years, I still have times when I miss her terribly but somehow, my thoughts go back to the time when she was active and in charge of her life and mine.

diertz, I thank you so much for beginning our discussion with such openness and honesty.   I am very touched and honored that you courageously shared your perspective from the point of view of the person living with life-threatening illness. And yes, it is certainly not only the caregiver who grieves, but the person who is ill grieves as well. It is a two-sided relationship. When there is love between people it is hard to draw a line between them to distinguish one?s suffering from another?s.  For that reason, I notice that the term ?care partners? is increasingly being used to reflect the connection between people in a caregiving relationship.  It is crucial that care partners communicate their grief with one another in an environment of mutual support, where no one is told how they ought to feel. I hope that you have the opportunity to dialogue in this way with your loved ones.  Let?s talk further.

Mary Frances, thank you for joining us with a thoughtful reflection on your many stages of grief for your mother.  It sounds like your family went through a series of progressive losses over a long period of time.  I appreciate your clarity and resilience as you face your losses and cope with them over time.   

Our grief is related to our sensitivy to our loved  one andsmall losses of their independence and vitality set the greiving process in motion. Love is the bond that joins us and can heal each stage of grief we encounter. I felt such relif during my own fathers illness when in his moments of clarity he held my hand and smiled. It was hope in an unexpected and welcomed sign.


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