Caregivers

Grief & Bereavement

Grief can begin before a death and can continue or change after it. Caregivers may grieve abilities, routines, roles, plans, relationships, and the person’s death.

There is no single grief pattern

Sadness, anger, guilt, relief, numbness, fear, love, resentment, and moments of ordinary life can coexist. None of these feelings alone proves that you cared too little or too much.

Grief can be affected by sleep, isolation, prior losses, trauma, faith, culture, finances, and the intensity of caregiving. Support should be respectful of the person and family.

Sources: Support for Caregivers · Caring and MND: Support for You · Caregiving

Before a death

Ask the ALS team, social worker, counselor, or hospice team about anticipatory grief, communication, rituals, practical planning, and support for children or other family members. The person living with ALS should remain part of conversations when they want and can participate.

Sources: Caring and MND: Support for You · Support for Caregivers

After a death

  • Give yourself time and reduce nonessential demands when possible.
  • Ask trusted people to help with concrete tasks.
  • Seek grief counseling, a bereavement group, or culturally appropriate support if it would help.
  • Tell a clinician if grief is affecting sleep, safety, eating, substance use, or ability to function.
  • Get urgent help if you may harm yourself or someone else.

Sources: Support for Caregivers · Caregiving · Taking Care of Yourself: Tips for Caregivers

Urgent emotional safety

If you are in immediate danger or may act on thoughts of suicide or self-harm, call emergency services or, in the United States, call or text 988. ALS Hub is not an emergency service and cannot assess risk.

Sources: Taking Care of Yourself: Tips for Caregivers

Sources & Further Reading

These source cards link directly to the original material. External websites open in a new tab.

Caregiver information is educational and does not replace individualized instruction from the ALS team, a licensed clinician, an employer or benefits professional, or an emergency response system.

Caregiver information last reviewed: 09-30-2026

Back to Caregiver Home