Caregivers

Caregiving and ALS

Caregiving for someone with ALS can be meaningful, exhausting, confusing, loving, frustrating, and overwhelming — sometimes all in the same day.

Caregiving can involve physical tasks, emotional support, communication, decision-making, transportation, equipment, finances, work, appointments, and planning for needs that may change over time.

There is no single correct way to be a caregiver, and no caregiver is expected to know how to do every task alone. The safest plan is to learn from the ALS care team, ask for help early, and revisit the plan as needs change.

Choose what you need today

Caregiver guides

Start with the situation closest to yours. You can move between guides as needs change.

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I am new to caregiving

Start with a first-week checklist, care-team questions, and a plan for learning tasks safely.

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I need to learn a care skill

Find starting points for transfers, feeding and swallowing, communication, breathing equipment, and personal care.

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I am exhausted or feel guilty

Make caregiver health, respite, support, and emotional safety part of the care plan.

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I need a break

Explore respite questions and local or VA pathways for getting time away from caregiving.

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We need help at home

Compare family help, aides, skilled home health, private-duty nursing, palliative care, and hospice conversations.

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Caregiving is affecting my job or money

Start with FMLA information and a checklist for benefits and coverage questions.

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The person I care for is a veteran

Find VA caregiver support, general services, comprehensive assistance, and respite information.

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Behavior or thinking has changed

Track specific observations and bring them to the ALS team without trying to diagnose the cause yourself.

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We need to plan for more care

Use a practical planning checklist before a crisis makes every decision urgent.

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I can’t do this alone anymore

Find words for asking for help and a starting point for reviewing what is no longer safe or sustainable.

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I need people who understand

Find caregiver support and peer connection starting points.

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We are grieving

Make room for anticipatory grief, loss, anger, relief, and support before and after a death.

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I need a resource by location or need

Filter a source-linked list by need, state, relationship, veteran status, and resource type.

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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