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.
- 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.
Table of Contents for Caregiver's Grief
- Caregiver Grief A Long-Term Process
- The Nature of Caregivers' Grief
- Caregiver Grief - Nancy Reagan One of the Most Visable Caregivers
- Resources on Caregiver Grief
- Grief - The Multifaceted Reaction
- A Caregiver Quote - Incredible Sadness
- The Long Goodbye
- Creating Moments of Joy: A Journal for Caregivers on Amazon
- Keeping a Caregiver Journal
- Gratitude Journal Prompts
- More Journals for Caregivers Available on Amazon
- Research articles on Caregiver Grief
- Books to Help with the Caregivers Grief
- Caregiver Quote from Maureen Reagan
- More Squidoo Lenses on Caregivers and Caregiver Stress
- Books to Help Caregivers Keep on Caring
- Caregiver Grief is a Featured Caregivers and Caregiving Lens
- Other Lensmasters Coping with Caregiver Grief
- Reader Feedback on the Caregiver Grief Lens
The Nature of Caregivers' Grief
A Unique Experience for Each Caregiver
- 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 Visable 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 Services.
- 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
- 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
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
Creating Moments of Joy: A Journal for Caregivers, Fourth Edition (NEW COVER)
Amazon Price: $16.47 (as of 12/24/2009)
It is so important for caregivers to find ways of creating moments of joy for themselves. The Creating Moments of Joy: A Journal for Caregivers was written by Jolene Brackey, whose life mission is to help caregivers.
She has found ways to create positive outcomes and moments of joy for the individuals with the disease, their loved ones, and professional caregivers.
Keeping a Caregiver Journal
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
- 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
With Love: A Caregiver's Journal
Amazon Price: $17.95 (as of 12/24/2009)
The Family Caregiver's Journal: A Guide to Facing the Terminal Illness of a Loved One
Amazon Price: $14.95 (as of 12/24/2009)
A Guided Journal for Caregivers
Amazon Price: $12.95 (as of 12/24/2009)
The Heartmates Journal, 2nd Edition: A Companion for Partners of People with Serious Illness
Amazon Price: $14.95 (as of 12/24/2009)
Family Caregiver Organizer: A Personal and Medical Journal for Care-receivers and Their Caregiver(s)
Amazon Price: $15.95 (as of 12/24/2009)
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.
Books to Help with the Caregivers Grief
Available on Amazon
Grief Education for Caregivers of the Elderly (Haworth Religion and Mental Health.)
Amazon Price: $54.95 (as of 12/24/2009)
Life to Death: Harmonizing the Transition: A Holistic and Meditative Approach for Caregivers and the Dying
Amazon Price: $14.95 (as of 12/24/2009)
Caregiving: The Spiritual Journey of Love, Loss, and Renewal
Amazon Price: $32.50 (as of 12/24/2009)
The Dying Time: Practical Wisdom for the Dying & Their Caregivers
Amazon Price: $14.95 (as of 12/24/2009)
Companioning the Dying: A Soulful Guide for Counselors & Caregivers
Amazon Price: $21.86 (as of 12/24/2009)
Caregiver Quote from Maureen Reagan
Remarks about Nancy Reagan
- There's a special place in heaven for caregivers.
Maureen Reagan
More Squidoo Lenses on Caregivers and Caregiver Stress
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Caregiver Syndrome - Caregiver Stress Syndrome
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Caregiver Stress Syndrome is a way to describe the physiological and psychological changes experienced as the result of chronic stress due to ongoing caregiving activities. Caregiver Stress Syndrome are actual physiological and psychological symptoms...
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Caregivers and Caregiving
-
A Caregiver is "a person who is responsible for attending to the needs of a child or dependent adult." Caregiving is the care provided for that person. Caregiving is often one of the most important, demanding and stressful roles that a per...
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Caregiver Stress - The Impact of Caregiving Too Much
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Caregiver Stress is the emotional strain of caregiving for a loved one, or attending to the needs of a child or dependent adult. Caregiving can have a major impact on the caregiver's own health. Caregivers become so concerned about caring for their...
Books to Help Caregivers Keep on Caring
Available on Amazon
Alzheimer's Activities: Hundreds of Activities for Men and Women With Alzheimer's Disease and Related Disorders
Amazon Price: $25.60 (as of 12/24/2009)
Share The Care: How to Organize a Group to Care for Someone Who Is Seriously Ill, (Revised and Updated)
Amazon Price: $10.20 (as of 12/24/2009)
A Dignified Life: The Best Friends Approach to Alzheimer's Care, A Guide for Family Caregivers
Amazon Price: $9.32 (as of 12/24/2009)
The Fearless Caregiver: How to Get the Best Care for Your Loved One and Still Have a Life of Your Own (Capital Cares)
Amazon Price: (as of 12/24/2009)
Alzheimer's Activities That Stimulate the Mind
Amazon Price: $13.64 (as of 12/24/2009)
Caregiver Grief is a Featured Caregivers and Caregiving Lens
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Caregivers and Caregiving Headquarters
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Caregivers and Caregiving A group devoted to caregivers, the person who is responsible for attending to the needs of a child or dependent adult. This group contains carefully selected lenses with information and resources for caregivers, the unsung...
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Reader Feedback on the Caregiver Grief Lens
Your place for comments, messages, suggestions, ideas and feedback
Have you been affected by Caregiver Grief?
Be sure to leave your tips, comments, rank the site, pass on the word about the site (email) and leave a message (Reader Feedback).
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Reply
- homecarediva homecarediva May 8, 2009 @ 5:41 am
- It is nice that you mention Nancy Reagan, she is great woman. And most proper example of real caregiver. Nice lense!
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Reply
- PaulaFarris PaulaFarris Apr 5, 2008 @ 1:34 pm
- Excellent information here! As a caregiver for my Mom who has Alzheimer's I am all too acquainted with the greif associated with this kind of caregiving. Resources like yours are a blessing. Thank you.
Paula Farris
"The Recovering Nonachiever"
http://dementia--ontheoutsidelookingin.blogspot.com/
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Reply
- SmilingGuy SmilingGuy Mar 29, 2008 @ 1:17 pm
- Your Lens provides a valuable resource for Caregivers in need of moral support. Good work!
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Reply
- Home-healthcare Home-healthcare Feb 21, 2008 @ 9:23 pm
- I have experienced caregiver grief in the 1990's (husband and others very close to me) and again since 2003 with the multi-year decline of Mama with Dementia and Daddy's heart attacks, congestive heart failure, failing kidneys... and death. It is easy to see why caregiver burnout and caregiver suicide are on the rise in this country. If I did not have my relationship with God, I do not know how I would have coped and survived! My heart goes out to caregivers everywhere, and I understand their pain and grief! My life is now devoted to helping them, and it means so much to meet people like YOU.
by Comfortdoc
Kirsti A. Dyer MD, MS, FT is a respected physician, an expert in life challenges, loss, grief and bereavement, professional health educator, professor...
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