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.
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)
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.