Grieving Center

GRIEVING DISCUSSION BOARDS => Caregiver Support Discussion => : dsmyer1 May 12, 2009, 03:40:10 PM

: When does our grief begin?
: dsmyer1 May 12, 2009, 03:40:10 PM
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

: Re: When does our grief begin?
: diertz May 14, 2009, 09:22:41 AM
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.
: Re: When does our grief begin?
: Mary Frances May 14, 2009, 03:07:29 PM

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.
: Re: When does our grief begin?
: dsmyer1 May 14, 2009, 05:20:15 PM
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.   
: Re: When does our grief begin?
: owentheii May 16, 2009, 10:07:53 AM
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.
: Re: When does our grief begin?
: Clyde Adams May 19, 2009, 04:57:00 PM
My grief began after my son died.  Before that, there had been fear, and dread, and sadness and anger and even some peace and joy sometimes.  But the morning after my boy died in my arms I woke up in a different world.
: Re: When does our grief begin?
: dsmyer1 May 21, 2009, 10:56:12 AM
Thank you, owentheii and Clyde, for sharing the many ways that grief shows up in our lives, both before and after the loss of life.  Perhaps what we call ?grief? should actually have many names.  You both pointed out that sometimes, before death comes, sadness, anger and dread can mingle with feelings of relief, peace and joy. For you, owentheii, love has the capacity to heal us.  But for you, Clyde, the devastation of losing your dear son has changed your whole world, and nothing is the same.  Please keep in touch with us and let us know how you are doing.

How do we cope and move toward healing, both during and after the loss of someone for whom we have been caring?  Just as grief is different for everybody, so, too is the process of living with that grief.  Day by day, those caring and grieving for a loved one who is ill must find a way to function each day. Depending on your particular situation, you must work outside the home, care for other important people in your lives, and care for yourselves.  Look for an upcoming post from me on this subject.
: Re: When does our grief begin?
: gold7swan May 24, 2009, 02:45:08 PM
When my mother was first diagnosed with cancer, I was in a state of extreme shock.  To protect myself from the pain of the enormity of this disease and the approach of my mother's death, I stayed in a state of denial until her death.  I would tell myself that maybe the cancer will go into remission or maybe there will be a miracle healing from God.  Even though I saw the signs of her health declining over a 14 month period,  I did not want to let her go.  I loved her so much and could not think of my life without her presence.  Just to hear her voice over the phone meant a lot to me.  Although I miss her dearly, I know that she is no longer suffering and present with the Lord.  So, now I can rejoice through my loss.  It was only after my mother's death, that I allowed myself to begin grieving. 
: Re: When does our grief begin?
: dsmyer1 June 01, 2009, 10:57:55 AM
gold7swan, thank you for your willingness to share your feelings and experiences surrounding the loss of your mother.  In sharing your experience of shock, you raise an important point: sometimes the prospect of losing a loved one is just too painful to accept at first.  The devastation of watching your mother?s decline was just too much to bear. You hoped for a miracle and that is not unusual.  We let go when we are able?often gradually, over a period of time.  Your love for your mother shines through, as does your own resilience.  As you grieve, I hope you are getting the support that you need. 
: Re: When does our grief begin?
: jmc June 17, 2009, 04:45:16 AM
This information is so vital for all involved with an ill loved, friend, lover, caregiver. It is so heartening to know of such wonderful support services for those in need.
: Re: When does our grief begin?
: Peter N. July 02, 2009, 10:08:51 AM
For me grief began with my loved one's diagnosis: and with that diagnosis came a tremendous sense of isolation for me as the primary care giver. While the experience of which I'm speaking is now several years past, the grief (albeit now subdued) remains as alive as her memory. I'm greatly heartened by the existence of this forum, and by the work being done here.
: Re: When does our grief begin?
: dsmyer1 July 06, 2009, 03:26:50 PM
Thank you, Peter N; loneliness and isolation are such a huge part of the experience of serious and life- threatening illness. With the diagnosis, the world suddenly changes. The person who is dying?and those who love him or her?are now part of a reality that not everyone can face.  And my experience has been that suddenly there is a bright line between those people who understand this experience and those who don?t.  Or between those who are close to my loved one and those who are not. 
: Re: When does our grief begin?
: IN July 08, 2009, 08:12:01 PM
Grief is a multi-faceted response to loss. It includes the emotion numbness, disbelief, separation, anxiety, despair, sadness, and loneliness that accompany the loss of someone or something loved.  Be it a person, pet, or the loss of love and at times even a job. It is painful and once we experience it, we are forever altered.  It can begin when we understand the realization that loss is inevitable.  No matter how much we are aware that loss will happen, we are never quite prepared for the pain and sadness that accompanies the loss.   

Yet it makes us appreciate that which we do have, it teaches us compassion and the importance of looking into the eyes of someone sad and if unable to give them a consoling word we can give them a hug.
: When does our grief begin?
: Ben Wilson July 25, 2009, 06:22:03 AM
Grief began when I realized that I could not forget and wanted to remember.  I had to get over the fact that they were gone and I wanted to remember without pain.
: When does our grief begin?
: Winston July 25, 2009, 07:13:21 AM
My mother spent many years with a condition which took her from an active alive person to one who could not care for herself.  It took many years for her to depart.  I spent the better part of my life watching her deteriorate.  The last several years, I changed employment and moved home to care for her full time.  She had a living will and named me as the one to carry out her wishes.  This was not easy.  Even though I knew that she had been battling her condition for many years, I thought she would live longer.  I realized this not the case when I received the telephone call to come home and take care of her.  I took care of my mother to be and not my career.  Family first. My siblings were in denial that mother was going to die.  She had been ill for so long and the rest of the family had grown tired of mother's illness and the thought of her death for so many years.  I had insulated myself from the pain of her condition for years and I did not grieve for some time.  I had selected the casket and made the funeral arrangements even before she passed.  When she passed in her own bed, I made two telephone calls and the funeral was the next day.

     It was not until a few years later, that I wanted to remember and I could not.  I wanted to forget and could not.  This is when it began for me.  The last post made sense to me.  It hit a cord.  Thank you. To remember without pain, to want to forget, but should not.  This was grief for me.  I spent some time realizing that I was no longer a caregiver and that my life has changed and I no longer had to worry.  The pain of remembering was the worst.  It took many months to let it go.  My mother is gone and now I have returned to the business world, it is different.  The days are longer, the air crisper, and the lights are brighter.  I feel much more alive.  Live is not all work, I take time to live.   Once I realized I could remember with out pain and enjoy the good thoughts and live with the bad ones all was good. 

    I hope that someone in my family were to do for me as I did for my mother, but alas, my family still grieves for her.  I hope they see this web site and take the time heal. 
: When does our grief begin?
: A.J. July 25, 2009, 09:56:00 AM
I too have had a similar experience with my mother.  My grief began when I knew she was terminal.  Denial, hate, and then acceptance happened.   It was hard, but as the primary caregiver, I had to be understanding of what my mother was going through and give her as much comfort as possible all the while making sure I has at ease with myself.  My grief process did not last long, but I was lucky. 
Thank you to the folks who posted and thank you to the hosts of this site. 
SimplePortal 2.3.5 © 2008-2012, SimplePortal