I have been disabled for 12 years because of a brain tumor that’s caused a lot of neurological damage that makes me very sick. Also, I recently have been diagnosed with breast cancer. My husband has became my caregiver over the past year. And I am trying to go the fastest way to get him urgently as my paid caregiver. However, Medicare told me through their waiver services that it would be like a year and a half two year waiting list. Medicaid told me theirs would be a year waiting list. So like this is crazy like what good is these services if they are unavailable when people actually need them I might be dead in two years for all they know I am a cancer patient for God sake.
When seeking help, nothing is quick. Is your husband a Vet who served during wartime? If so you may qualify for Aid and Attendance but may need to be 65 or older.
A few national organizations that can help regardless of state:
Family Caregiver Alliance — excellent at helping families identify state-specific programs and emergency resources
CancerCare Financial Assistance — grants and counseling for cancer-related financial strain
Susan G. Komen Support Resources
ARCH National Respite Network — helps locate respite and caregiver funding programs
USA.gov Caregiver Pay Programs — federal overview of paid caregiver options by state
A practical suggestion:
If you have not yet spoken with:
a hospital oncology social worker,
a county social worker/case manager,
or a palliative care social worker,
you really should. Cancer centers often know about:
emergency grants,
caregiver stipends,
nonprofit aid,
transportation,
temporary home-health funding,
and *expedited* Medicaid waiver pathways.
Many families do not realize oncology social workers can sometimes unlock resources faster than trying to navigate Medicaid alone.
(information aggregated by ChatGPT)