Caregivers

New to Caregiving

A first starting point for learning what needs to happen now, what can wait, and who should teach each task.

Start with a care map

Write down the person’s main ALS clinic contact, primary clinician, nurse, respiratory contact, speech-language pathologist, physical therapist, occupational therapist, dietitian, social worker, pharmacy, equipment suppliers, and emergency contacts.

Ask the clinic who should be called for urgent changes and who can teach each hands-on task. Keep the current medication list, equipment list, allergies, and insurance information in one place.

Sources: Caregiver Resources · Caring and MND: Support for You

The first questions to ask the team

  • Which tasks should I be trained to do, and who will demonstrate them?
  • What changes should prompt a same-day call, an urgent evaluation, or emergency help?
  • What equipment or home changes should we arrange before they are urgently needed?
  • Who is the social worker or care coordinator for benefits, home help, transportation, and respite?
  • What should be written down after an appointment so other family members can follow the plan?

Sources: Caregiver Resources · Care Worker Module

A first-week checklist

  • Save the clinic and after-hours numbers.
  • Create a shared medication and appointment list.
  • Ask for hands-on training for transfers, feeding or swallowing support, communication, and respiratory equipment when relevant.
  • Identify one person who can provide backup for a short period.
  • Ask about respite, support groups, and local caregiver programs before you feel desperate.
  • Schedule a check-in for your own health and sleep.

Sources: Taking Care of Yourself: Tips for Caregivers · National Family Caregiver Support Program · Support for Caregivers

You do not have to become the only expert

Care tasks should be matched to the person’s needs, the caregiver’s capacity, and professional instruction. If a task feels unsafe or cannot be done without lifting, rushing, or guessing, stop and contact the care team for a different plan.

Sources: Care Worker Module · Caring and MND: Support for You

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

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