Caregiver Grief
Caregiver Grief - A Multifaceted Reaction to a Loss
Grief is important part of the caregiver experience that is often overlooked. According to Grief expert Kenneth Doka, PhD "Grief is a reaction to a loss, but it can be -- and with caregivers grief often is -- a multifaceted reaction."
Many caregivers of the aging or the ill experience anticipatory grief, or grieving prior to the actual death of the person. Particularly with those dealing dementia, caregivers experience the "death" of the person as the mind dies but the body remains behind. The grief a caregiver experiences is still as real, as if the person had died.
Photo Source: Modified Microsoft Image.
Caregiver Grief A Long-Term Process
Cycles of Grieving and Re-Grieving the Losses.
For caregivers, whose losses are sustained over a long period of time, grieving itself can become a long-term process.
- Illnesses that keep changing can bring grieving and re-grieving. As caregivers go through the various stages of the illness with their loved one, they may experience, variously, sadness, anger, weepiness, depression, even despair.
- Judith Bernardi, M.S.W., Ph.D.
The Nature of Caregivers' Grief - A Unique Experience for Each Caregiver
The loss that caregivers experience is unique to each caregiver. However, most caregivers will acknowledge experiencing the emotions of
- They witness the pain, sadness, and difficulties of others on a regular basis.
- The painful experiences of others tap into their own reservoirs of unresolved grief and pain.
- They are emotionally "attached" to a child or adult who dies or becomes ill.
- Source: ARCH National Resource Center for Respite and Crisis Care. Caregivers Grieve, Too! ARCH Factsheet Number 40, July 1995.
Caregiver Grief - Nancy Reagan One of the Most Visible Caregivers
Coping with Conflicting Emotions Sorrow and Relief
"We tend to associate grief with strictly negative emotions, but it's much wider than that," he tells WebMD. "We know that with the death, there's often relief that the suffering has ended. But there can also be strong feelings of fulfillment.
Right now, Nancy Reagan may be saying,
- 'I got through this.
- I was by his side,
- even when he didn't know I was by his side.'"
These conflicting emotions can be difficult for a caregiver who is already stressed and vulnerable. This conflict may explain why nearly one in three caregivers meets the medical diagnosis for depression.
Source: Kirchheimer S. 2004. Caregiver Grief Triggers Mixed Emotions. From WebMD.
Photo Source: Wikipedia Images. Nancy Walks Away with Flag. Public Domain.
Resources on Caregiver Grief
- Caregiver Grief ~Article
An article by Pat Kaufman on Caregiver's Grief ~ Dealing With Ongoing Loss. - The Caregiver's Home Companion - Caregiver Grief
An article on Caregiver Grief: Understanding the Myriad of Emotions Triggered by End-of-Life Decisions written by Kenneth J. Doka and featured on The Caregivers Home Companion. - Information on caregiver grief on MedicineNet.com
From the initial diagnosis to a loved one's death and beyond, caregivers are faced with a barrage of conflicting feelings. Here's how to cope with them. - Caregivers Grieve, Too!
An ARCH Factsheet Number 40, July, 1995 on Caregivers Grieve, Too! written by Kathleen Braza, M.A. This factsheet was produced by the ARCH National Resource Center for Respite and Crisis Care Services funded by the U.S. Department of Health and Human - Grief and Loss
A helpful article from the Family Caregiver Alliance (FCA) the explains how caregivers will grieve a loss and what to anticipate after experiencing a major loss.
Grief - The Multifaceted Reaction
Conflicting emotions can be common and very difficult for a caregiver to experience. Some of the common emotions experience by caregivers include:
- Depression
- Hurt
- Sadness
- Anger
- Weepiness
- Despair
- Relief
A Caregiver Quote - Incredible Sadness
Taking Time to Sit with the Hurt
- This incredible sadness comes over me at times.
- I just stay with it.
- I say
- 'Good, I'm sad, I need to be sad.'
- I just let it just hurt me inside for awhile
- and then I'm over it.
- Caregiver Quote
Source:
Waldrop DP. 2007. Caregiver Grief in Terminal Illness and Bereavement: A Mixed- Methods Study Health & Social Work on Redorbit.com
Photo Source: Robert Aichinger. Sepia Sadness. Royalty Free Use.
The Long Goodbye
Prolonged Grief with Alzheimer's Disease
Grief work may assist caregivers to deal with their feelings of loss and the series of losses that occur over the prolonged course of the disease.
The professional must realize that caregivers of persons with Alzheimer's disease are akin to "long distance runners." As such they may not be able to "resolve the situation because of the lengthy disease process."
Nancy Reagan summed up this view in referring to "the long goodbye" in coping with former U.S. President Reagan's disease (Newsweek, October 2, 1995). In describing Alzheimer's disease...
- It really is the long, long goodbye.
Source:
Wong PT, Fry PS. The Human Quest for Meaning: A Handbook of Psychological Research and Clinical Applications. Lawrence Erlbaum Associates, 1998.
Photo Source: Modified Microsoft Image.
Creating Moments of Joy: A Journal for Caregivers on Amazon
Keeping a Caregiver Journal
One of the things that you can do as a caregiver is to keep a caregiver journal as a way of expressing your feelings, your hopes, your sadness, your losses and even your gratitude.
Joan Walsh Anglund wrote that
- Adversity often activates a strength we did not know we had.
Keeping a journal can help you keep track of your progress, your lows and your highs as you face the challenge.
Gratitude Journal Prompts - Ways to Get Started Writing a Caregiver Journal
Here are three different quotes with questions as suggestions for starting you writing in a caregiver journal:
- On Sadness
This incredible sadness comes over me at times.
I just stay with it.
I say
'Good, I'm sad, I need to be sad.'
I just let it just hurt me inside for awhile
and then I'm over it.
Caregiver Quote
Take a moment to stop and think and sit with the sadness before you start writing, then consider the question
"What is it that makes me the most sad about this situation?"
- On Misfortunes
If all misfortunes were laid in one common heap
whence everyone must take an equal portion,
Most people would be contented to take their own and depart.
Socrates
Take a moment to stop and think before you start writing then consider the question
"If I could swap places with another person, and take on their misfortunes, would I trade mine?"
- On Surmounting Difficulties
Real life isn't always going to be perfect or go our way,
but the recurring acknowledgment
of what is working in our lives
can help us not only to survive but surmount our difficulties.
Sarah Ban Breathnach
Take a moment to stop and think before you start writing then consider the question
"What *is* working in my life?"
More Journals for Caregivers Available on Amazon
A collection of Caregiver Journals to help you stay focused and in some cases organized.
Research articles on Caregiver Grief
- A Comprehensive, Stage-Sensitive Model of Grief in Dementia Caregiving
An article taken from The Gerontologist 41:658-670 (2001) looking at A Comprehensive, Stage-Sensitive Model of Grief in Dementia Caregiving. - Caregiver Grief in Terminal Illness and Bereavement
Caregivers experience multiple losses during the downhill trajectory of a loved one's terminal illness. Using mixed methods, this two-stage study explored caregiver grief during a terminal illness and after the care recipient's death.
Caregiver Quote from Maureen Reagan
Remarks about Nancy Reagan
Maureen Reagan once offered these thoughts about her stepmother, Nancy Reagan, who cared for her father, Ronald Reagan, through his illness.
- There's a special place in heaven for caregivers.
- Maureen Reagan
Have you been affected by Caregiver Grief?
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