Caregiver Grief

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. 

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 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.

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.

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

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.

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.

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.

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?"

   
   

A collection of Caregiver Journals to help you stay focused and in some cases organized.

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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