Caregiving & Grief

Coping with Grief Before and After the Death 

Grief is not experienced only after death. As a caregiver, you may be susceptible to two types of grief: anticipatory grief during your loved one’s illness, and then grief that occurs after the person dies.

Many caregivers experience “anticipatory grief” as they observe the physical, psychological, and cognitive declines occurring as the illness progresses. For many caregivers of people with dementia this may be especially painful, as their loved one becomes almost unrecognizable compared to the person “they used to be.”     

After the death of a loved one, it can be difficult to see how to ever go on. The grief journey may seem like a mountain that is too difficult to climb. Here are some steps you can take that may help ease that journey. Many of these suggestions apply to both anticipatory grief and grief following the death:

Allow your grief

There may be no more important step than this. Appreciate, accept, and allow your grief as a natural response to facing the death of your loved one. Let yourself feel your pain. Grief is a mix of many uncomfortable feelings. You may feel sad, angry, or filled with remorse, regret, or longing. All these feelings are natural, especially when combined with the day-to-day challenges of caregiving.

Express your grief

Empty out your feelings. Cry when you need to cry. Be angry when you feel angry. Don’t suppress yourself or pretend to be stoic. While this can seem hard to do when focusing on the care of someone at the end of life, find safe outlets with a trusted friend, counselor, or someone from the hospice team. Grieving takes many forms, which are all acceptable unless your grief causes harm to yourself or others.

Be patient with yourself

Grief is a process and there are no timelines or stages. It can be difficult to think of moving past the experience of caregiving and loss, but it will be possible. Trust that you can and will cope with your loss. 

Keep a journal

This is a powerful method for expressing pain, as well as a means for having private, intimate time with yourself. Some feelings may be too hard to speak aloud, like anger or regret. Journal writing can serve as a release as well as a meaningful expression of yourself.

Exercise daily

Move your body. Walking, dancing, swimming, or whatever activity pleases you, can help you feel better. Through exercise, you build your physical strength, release tension, enliven yourself, and keep yourself well. Exercise releases endorphins that will lift your mood. Caring for yourself while caring for someone who is dying is difficult but critical; even a brief walk each day will benefit both your emotional and physical health.

Developed from Journeys with Grief: A Collection of Articles about Love, Life and Loss, edited by Kenneth J. Doka, Ph.D., MDiv., copyright Hospice Foundation of America, 2012.

Articles for support

Journeys author and psychotherapist Judy Tatelbaum, MSW, shares her thoughts and advice:

"There is a natural sense of loss when the need for our caregiving is over. We must often face the double sorrow of losing a loved one and our purpose or role in their lives.

"The aftermath can be a very difficult time that leaves us feeling lost, lonely, and useless. We may not feel grounded without that important function of taking care of another in our lives. Our direction may feel unclear. The future may look bleak or even empty."

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Dr. Ken Doka discusses Guilt and Regret in Prolonged Illness 

"It often is said that sudden death is hard on survivors but easy for the person who died. That same conventional wisdom may view death after a long illness as being easier for survivors. The truth is more complex. Each death is difficult— but in its own way. Sudden deaths do leave survivors feeling shocked and vulnerable, but death after a long illness can still leave survivors feeling numbed and exhausted.

"Survivors of any death still grieve. When death follows a long illness, that grief can be evident in feelings of guilt and regret that may arise from the illness experience itself."

Read More