Care Giver Grief – The Losses of Daily Life & ‘Anticipatory’ Grief

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by Glynis Sherwood MEd

Today I took my beloved tabby cat Cleveland for yet another surgical intervention to deal with his severe chronic respiratory disease.  He’s a brave, loving and determined little fellow who has just barely bypassed the grim reaper on several occasions.  This time his vet is looking for everything from a fungus infection to cancer.  Cleveland’s life started out rough in a wealthy but unloving home where he was unwanted, to abandonment at a ‘No Kill’ shelter where we found each other.  He is no stranger to loss.  Thankfully all this is behind him as he has been with me ever since.

The Legacy of Loss & Tough Beginnings

One of the unfortunate downsides to adopting a shelter cat is the vulnerability these cats have to picking up diseases from each other, especially in the stressed and often weakened state they arrive in.  Cleveland was infected with a particularly nasty strain of feline herpes in the shelter, and has been struggling since.  He has nearly died twice, and over the past three months has been straining to breathe.  It struck me that in my role as ‘mom’ to this sweet boy, I am not unlike other caregivers who deal daily with attending to a love one with a chronic, debilitating or potentially fatal health problem.  I was not blessed with children, so the animals I am privileged to be guardian to have become my kids.  And like moms everywhere, I am sometimes filled with sadness and feelings of helplessness as I am powerless to make my boy well again.  Although more people appreciate the depth of the human-animal bond, fewer understand the wear and tear of loss that comes from caring for a loved one with a chronic, irreversible illness.

The Daily Grief of Long Term Care Givers

People who provide long term care to disabled, chronically or terminally ill loved ones often experience ‘disenfranchised’ or socially unrecognized grief.  This socially unrecognized grief can add the burden of loneliness and isolation to an already painful situation.  Care giver grief can be as difficult and complex as bereavement, as the loss occurs on many levels: from witnessing the decline of a formerly healthy loved one, to anticipating the possibility of premature death, to coming to terms with the changes in the relationship due to loss of health, as well as the caregivers grief over the loss of their freedom, to caregiver guilt or resentment.  Care giver grief is particularly challenging as often there is no known ‘end point’ as the care taking can go on for years and decades.  On the other side, the ill person receiving care is also likely to be grieving the loss of their health, status and independence, and perhaps ensuing end of life.  Often this grief is not discussed between the caregiver and recipient of their care due to fear, taboos, incapacity or simply the belief that discussing grief and loss will hinder rather than help.  Sadly the burden of care often falls to middle aged women – the ‘sandwich generation’ – who have dual responsibilities in caring for parents and their own children simultaneously.

Managing Loss & Grief as a Care Giver

To the care givers out there I say, your grief is normal and understandable and you are not alone.  To take on the burden of long term care is a labor of love, and like any long term undertaking requires balance and healthy limits.  As much as possible, long term care giving should be shared by family or a community of loved ones.  The principal care giver especially needs respite to rest, exercise, eat properly and to enjoy the lighter side of life.  Caregivers who’s lives are centered on providing care for a loved one can be vulnerable to depression as well as grief.  It can be helpful to have discussions amongst family members and loved ones to decide how care giving responsibilities can be divided up.  It’s unfair to presume women will do all the work or pick up the slack.  On the flip side, sometimes women contribute to their burden by not being able to share the load.  Finding and maintaining balance takes fine tuning and a conscious effort.

Update on Cleveland

Sadly I have just learned that my sweet, beautiful boy has Adenocarcinoma, an inoperable nasal tumor.  I will likely opt for holistic treatment and avoid the toxic and traumatic route of conventional cancer treatment.  His future is uncertain and the odds are not good.  So as his care giver I am faced with the ambiguity of not knowing whether this is an end of life situation or if he can possibly go into remission.  As his care giver I must live with the uncertainty and deal with the daily losses in his and my life brought about by the presence of this illness.  I ask for guidance to find balance and perspective in the midst of a tentative present and unknowable future.

How about you?  What have you done to deal with care giver loss and anticipatory grief?

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Glynis Sherwood – MEd, Canadian Certified Counsellor, Registered Clinical Counsellor, specializes in helping people recover from all kinds of Loss, Grief and Stuck Grief – aka ‘the pain that won’t go away.  I look forward to hearing from you and helping you achieve the peace of mind you want and deserve.