Caregivers

Planning for More Care

Planning is a way to preserve choices and reduce last-minute pressure. It is not a prediction of exactly what will happen.

A practical planning checklist

  • What tasks are manageable today, and which already require help?
  • What changes would make the current home setup unsafe?
  • Who can provide backup if the primary caregiver is sick or unavailable?
  • What equipment, home modification, transportation, or communication support may take time to arrange?
  • What are the person’s preferences for privacy, routines, hospitalization, ventilation, feeding, and emergency decisions?
  • Who has permission to receive information and help with decisions?
  • Which legal, financial, benefits, and employment questions need a qualified professional?

Sources: Caring and MND: Support for You · Caregiver Resources · Help for Older Adults and People with Disabilities

I can’t do this alone anymore

Say it plainly to the ALS team, social worker, trusted family member, or friend. Identify the task that has become unsafe, the time of day that is hardest, and the kind of help needed. A specific request—“Can you cover Tuesday from 2 to 5?”—is easier for others to answer than a general request for help.

If the person’s needs exceed what one caregiver can safely provide, ask for a care-plan review and home-support assessment. Your capacity is important information, not a failure.

Sources: Taking Care of Yourself: Tips for Caregivers · National Family Caregiver Support Program · Caring and MND: Support for You

Cross-link the planning conversations

Open Living With ALS Planning Ahead Open Finding Help at Home Open Respite

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

Review the plan regularly

Revisit the plan after a fall, hospitalization, new equipment, swallowing or breathing change, major work change, or caregiver health change. Keep the current version accessible to the people who may need it.

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

Sources & Further Reading

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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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