Caregivers

Finding Help at Home

“Home care” can mean different services. Ask exactly who comes to the home, what they can do, how often, under whose plan, and how payment works.

Common categories to compare

Family or friend help

Informal help may cover meals, transportation, companionship, errands, or scheduled care tasks when the helper has been taught what to do.

Personal-care aide or homemaker

May help with activities of daily living or household tasks, depending on the program, agency, training, and authorization.

Home health

Skilled home-health services are a specific medical benefit with eligibility and coverage rules. Medicare coverage is not the same as unlimited custodial or 24-hour care.

Sources: Home Health Services

Private-duty nursing

May provide extended skilled nursing when ordered and authorized; availability, payer rules, and agency scope vary.

Palliative care

Can support quality of life, symptoms, communication, and decision-making alongside disease-directed care when available and appropriate.

Hospice

Is a distinct service for people who meet the program’s eligibility requirements and choose comfort-focused care. Discuss timing and goals with the clinical team.

Sources: Home Health Services · National Family Caregiver Support Program · Respite Care

Questions to ask an agency or program

  • What tasks can the worker perform, and what training do they have for ALS-related needs?
  • Can they support transfers, feeding-tube care, respiratory equipment, communication, or nighttime needs?
  • Is there a nurse or supervisor available for questions?
  • What happens when the worker is sick or the agency cannot staff a shift?
  • What is covered, what is private pay, and what costs can change?
  • What information must the clinician, insurer, Medicaid program, VA, or other payer provide?

Sources: Care Worker Module · Home Health Services · Eldercare Locator

Medicare home-health clarification

Medicare’s home-health benefit has specific eligibility and coverage requirements. It should not be described as a general promise of continuous in-home caregiving, custodial care, or 24-hour supervision. Read the official coverage page and ask the treating team or benefits counselor how the rules apply.

Sources: Home Health Services

Sources & Further Reading

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

U.S. Department of Veterans Affairs

Respite Care

VA information about respite options and the need to confirm current eligibility and availability.

Visit source

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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