Anticipatory Grief: Grieving before a death

Date:

July 27, 2021
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What does it mean if you feel the symptoms of grief—such as denial, depression, anger, panic and physical ailments—but no one has died? Could you still be grieving?

What is anticipatory grief?

When we think of grief, we generally think of the process and feelings we experience after someone dies. In reality, we begin grieving on the day someone we love is diagnosed with a life-threatening illness. This process of mourning before someone we love has died is called anticipatory grief. According to noted grief expert, Dr. Therese Rando, anticipatory grief refers to the process in which we begin to mourn past, present and future losses. You are grieving the loss of someone to illness, not to death, although the emotions can be just as intense.

What could I feel during anticipatory grief?

While caring for a loved one, you might experience these feelings:

  • Personal sacrifice and burden. 
    It’s common to feel angry, scared and on edge. The role of caregiver is a burden and sacrifice, and you might regret losing the life you once led.
  • Heartfelt sadness and longing.
    You might grieve the loss of your old life and feel powerless to stop this new reality.
  • Worry and isolation.
    You may lose connections with other family and friends if you can’t socialize like before.
  • Guilt.
    Given the hardships of caregiving, you might have feelings that make you feel guilty, like a wish for the illness to end or relief when your loved one ultimately passes. All of these feelings are okay. 

Anticipatory grief is experienced by the care recipient and the family caregiver in different ways. Both loved ones and caregivers are grieving for the way life was and mourn the deterioration of the care recipient’s health. The care recipient mourns the loss of their previous body image, changes in their physical and mental abilities and possibly career loss.

Grieving losses

During the course of the illness there will be many losses for the care recipient and primary caregiver. These may include; intimacy, sex, privacy, independence, dreams, partnership, dignity, money, control, intellectual stimulation, friendship and family position. These losses will produce accompanying feelings of anger, sadness, depression, and abandonment. It is common for both the care recipient and caregiver to feel isolated, invisible and numb.

Both loved ones and caregivers are grieving for the way life was and mourn the deterioration of the care recipient’s health.

For caregivers of people with Alzheimer’s and other forms of dementia, as your loved one changes, each loss of ability can feel like a little death. You may grieve the losses of memory, awareness, personality and ability to communicate long before your loved one passes.

You could also mourn the loss of a relationship that brought you companionship, reassurance and a sense of self. For many people, the spousal or parent-child relationship is core to one’s identity.

A long-term illness sometimes leaves caregivers with a “mixed bag” of feelings. As you watch someone you love in pain, you may wish them to be out of their misery. This feeling can be followed by feelings of guilt and remorse, that we “wished” this person to die. Discussing these feelings is a survival necessity.

Frequently, the inability of friends and family members to manage their own discomfort with illness and death may cause the care recipient and the caregiver to be isolated.

How can I cope with anticipatory grief?

Anticipatory grief is real! Its symptoms can be a heavy burden while caring for a loved one. Ignoring or burying your feelings can lead to unnecessary confusion or guilt. Learning to recognize the symptoms of grief can help you cope, prevent burnout and better care for your loved one. Long, tiring days define the lives of many dementia caregivers. The right support system can mean all the difference.

Things you can do:

  • Understand that anticipatory grief is normal.
    You are allowed to mourn before a death. It is a normal reaction to the losses you are experiencing now and are anticipating for the future.
  • Talk to people you trust:
    friends, family, or members of your spiritual community.
  • Seek professional help.
    Talk to a licensed social worker or counselor, using your health insurance or employee assistance programs.
  • Take care of yourself.
    Caregiving demands energy that you must replenish. Stopping to rest is a necessity, not a luxury.
  • Take a break with respite care. 
    Caregiving demands energy that you must replenish. Stopping to rest is a necessity, not a luxury. Often called respite, someone stays with your care recipient while you take time to nap, go to your own medical appointments, attend a caregiver support group, go shopping, and do other self-care activities.You may qualify for at least temporary respite care. Respite care may be covered under long term care policies. Veteran benefits may also be available.
  • Contact service agencies about local, state, and federal help: 
    Call 211, your local area agency on aging, or ADRC (Aging and Disability Resource Center). Veterans or surviving spouse may quality for assistance.
  • Ask friends and family to help.
    Rotate people in for daily or weekly respite. You may not know until you ask. Do not assume that they know how to help you.
  • Hire a personal assistant.
    If you have self-pay resources, interview several “personal assistance” non-medical companies about rates, minimum hours they require, and the services they offer. (This is NOT home health, which is based on medical necessity). In most cases, people have to pay for these services, which can cost $20-$25 an hour with a minimum of 3-5 hours.
  • Go to a caregiver support group.
    Visit our Support Groups page which includes links to Alzheimer’s Association and local support groups. Call large churches in your area. Form your own group.
References: Deanna Upchurch, MA, blog on Hope Health hospice care & Jennifer Kay, L.C.S.W blog on Caregiver.com and additional content and editing by Zanda Hilger

We hope this information is helpful to you in the important work you do as a family caregiver.
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