My mother is bedridden, on hospice care, severe memory decline. She has retirement income plus social security that puts her just above the state Medicaid qualifying line. She needs 24 hour care (feeding, changing, cleaning) and giving pain management meds.
Her 24 in home care costs far exceed her income.
How do people pay for this kind of care?
To be frank I just went through this with a friend diagnosed with pancreatic cancer spread throughout by the time of diagnosis who went "home to die" with hospice. While hospice itself is paid for by medicare, it no long gives you much other than a nice little dropper bottle of morphine, an RN visit once a week, lots and lots and lots of equipment, a call from a social worker (who in our case didn't know as much as the friends did) , a call from clergy asking if they should come by, and two to three baths a week. They wouldn't let my friend go home unless she had 24/7 care which she paid two of HER friends themselves to do daily in 12 hour shifts, 20.00 an hour (would have been 40 to 45 an hour from agency). So add it up. The cost of delivered food? The money over the month it took for my friend to pass hemorrhaged out, taking most of the money she had saved throughout her career.
Afraid you are down now to that Social Worker from Hospice and I sure hope he or she knows more than ours. As MstrBill often says here, there is financial aid through medicaid fund for almost everyone who is a citizen. It is a matter of placement will take all the money from SS and/or pensions, and then the government will step in, and there will be clawback after death. So your Mom is in the spend down stage of hiring while she still has funds, and then placement when in home care cannot be afforded anymore. Life in America, and she is one of the lucky ones who HAS some funds.
I sure wish you luck. Speak with the Social Worker about where things stand as soon as you can. If he or she doesn't know tell them they need to reach out to someone who CAN help; it was once a part of the mission of Hospice to give complete care. I am afraid it is much changed of late, and we have discussed this on Forum recently.
I sure hope things go OK. I am so sorry for all you are going through and can truly identify.
You have all been so helpful. I’m am grateful for your advice.
Have you talked to Hospice about placing her in a NH and continuing her hospice there? Maybe Medicaid would overlook the extra under the circumstances. States do allow for Qualifying Income and Miller Trusts. The overage goes into the trust but an Elder lawyer needs to set up that trust. My State allows only 90days to get money spent down, get them info needed and find a place. Thats 3 more months Mom is in her home.
With Hospice in the home, family is expected to care for the person when Hospice is not there. Or pay an aide. You may have to take family leave to sort this all out.
I paid an in-home caregiver $25/hour, which was about $20,000/month, but a private room in a skilled nursing facility cost $12,000.
Your mom may need to go into a SNF as a private paying patient, then when he money runs out, she goes on Medicaid.