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Caregiver Grief

Updated on April 7, 2008

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.
Source: Kaufman P. Caregiver's Grief - Dealing With Ongoing Loss. From Our Final Journey.

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

  1. They witness the pain, sadness, and difficulties of others on a regular basis.
  2. The painful experiences of others tap into their own reservoirs of unresolved grief and pain.
  3. They are emotionally "attached" to a child or adult who dies or becomes ill.
  4. 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.'"
Kenneth Doka, PhD

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.

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:

  1. Depression
  2. Hurt
  3. Sadness
  4. Anger
  5. Weepiness
  6. Despair
  7. 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

Creating Moments of Joy for the Person With Alzheimer's or Dementia
Creating Moments of Joy for the Person With Alzheimer's or Dementia

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

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.
While it can seem difficult to realize when in the midst of a life challenge, often times these challenges are what ultimately define us and we discover a new strength.

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:

  1. 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?"


  2. 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?"


  3. 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.

Books to Help with the Caregivers Grief - Available on Amazon

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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Reader Feedback on the Caregiver Grief Lens - Your place for comments, messages, suggestions, ideas and feedback

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    • HealthfulMD profile image
      Author

      Kirsti A. Dyer 4 years ago from Northern California

      @CNelson01: I think it is one of the best descriptions that I've heard for the process.

    • CNelson01 profile image

      Chuck Nelson 4 years ago from California

      All well said. Thank you. The long goodbye....I'm there.

    • profile image

      selecthomecare 4 years ago

      Wow, such good information here. Very well done.

    • KReneeC profile image

      KReneeC 5 years ago

      I think this is a very important subject that is overlooked a lot of the times. Its especially difficult to the caregivers that did not necessarily have a choice in being a caregiver... What a wonderful lens.

    • LewesDE profile image

      LewesDE 5 years ago

      Love this lens!

    • profile image

      anonymous 6 years ago

      My grief comes and goes because I do not see my mother every day. But I speak to my father every day and feel his pain so much. I guess my grief is for both my parents - the fact that next month they will have been married for 60 years. It is so hard to know what to do to celebrate. My mother may not be very lucid on the day of the anniversary, but if she is, it will just heighten her pain of missing my Dad and not being able to be at home with him.

      I guess the way I deal with it, is to be there for my Dad as much as possible and try not to dwell on it too much when we are not together or talking on the phone because there really is nothing else I can do.

    • gottaloveit2 profile image

      gottaloveit2 6 years ago

      This lens is so right on, it's almost spooky. I'm my 94 year old Mom's caregiver (full time) and haven't had a moment to grieve for my father who died in 2007. Mom came home to me the very next day. We have good days and bad days. I've learned to flow with the bad days and exalt the good days. Thanks for all of the wonderful resources.

    • profile image

      anonymous 6 years ago

      Great lens, thanks so much.

    • ajgodinho profile image

      Anthony Godinho 6 years ago from Ontario, Canada

      This is a great resource for caregivers helping them cope and deal with grief. **Blessed by a Squid-Angel**

    • profile image

      anonymous 7 years ago

      Nice

    • profile image

      homecarediva 8 years ago

      It is nice that you mention Nancy Reagan, she is great woman. And most proper example of real caregiver. Nice lense!

    • profile image

      PaulaFarris 9 years ago

      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.co...

    • profile image

      anonymous 9 years ago

      Your Lens provides a valuable resource for Caregivers in need of moral support. Good work!

    • profile image

      Home-healthcare 9 years ago

      I have experienced caregiver grief in the 1990s (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.