Caring for a mesothelioma patient creates physical, emotional, and financial strain on family caregivers. Resources are available to help — including support groups, respite care, financial assistance programs, home health services, and mental health counseling. Caregivers must also take care of their own wellbeing to sustain long-term care responsibilities.
Support Organizations
- Mesothelioma Applied Research Foundation (Meso Foundation) — Patient and family support, research funding, symposium events
- American Cancer Society — Road to Recovery transportation, Hope Lodge temporary housing, caregiver resources
- CancerCare — Free counseling, support groups, financial assistance, and educational resources specifically for cancer patients and caregivers
- Caring Bridge — Free website platform to coordinate communication and care with extended family and friends
- Local hospice organizations — End-of-life care support, caregiver respite, grief counseling
Financial Assistance Programs
- Mesothelioma Applied Research Foundation — Patient support grants
- HealthWell Foundation — Copayment and insurance premium assistance for eligible patients
- Patient Advocate Foundation — Case management, insurance appeals, financial counseling
- Pharmaceutical assistance programs — Manufacturers of mesothelioma drugs (Bristol Myers Squibb for Opdivo and Yervoy, Eli Lilly for Alimta) offer patient assistance programs
- Social Security Disability (SSDI) — Mesothelioma qualifies for SSDI under the Compassionate Allowances program, with expedited approval typically in 30 days
- VA benefits for veteran patients — Disability compensation and healthcare
Practical Home Care Resources
- Home health services — Nursing, physical therapy, occupational therapy coverage under Medicare and most insurance
- Hospice and palliative care — Coverage typically begins when life expectancy is 6 months or less; palliative care is available earlier and alongside active treatment
- Medical equipment — Hospital beds, oxygen, wheelchairs — typically covered by insurance when prescribed
- Medications — Symptom management, pain control, nausea medications
Mental Health Support
Mesothelioma caregiving creates significant emotional burden. Resources include:
- Individual counseling with therapists experienced in cancer caregiving
- Online and in-person caregiver support groups
- Couples counseling to navigate relationship changes
- Family therapy for children coping with a parent’s diagnosis
- Grief counseling before and after loss
Self-Care for Caregivers
Caregivers often neglect their own health while caring for a loved one. Research consistently shows that caregivers who maintain their own medical care, social connections, and mental health provide better long-term care. Schedule your own medical appointments. Accept help from friends and family. Use respite care when available. Seek counseling if you are struggling.