How Much Can I Expect to Pay for Hospice in a Nursing Home?

1 answer | Last updated: Sep 29, 2016
A fellow caregiver asked...

My mother is staying with me because she's on hospice (she has end-stage emphysema). She needs oxygen 24/7 and is also extremely forgetful. I am divorced with young children and my 2 siblings help out while I'm at work (although they both live far).

I thought this would be 6 to 8 months max, but after staying with me for 3 months, her physical health has improved greatly, while mine is declining. I told my siblings that I could only do this another 3 months before we have to find other options. Realistically, a nursing home would be our only option, although my mom has limited resources--monthly SS checks and a small pension. Her house is in such a state of disrepair that it would net maybe $50-75000 if it actually sold as is.

I know someone can be on hospice care in a nursing home, but what would the financial stipulations be? I don't want to have a caregiver in the home. I have small children and a small house. Also, my mom won't even let the aid come to bathe her. Also, the way she is, I think she could easily live another 1-4 years.

Expert Answers

Audrey Wuerl, RN, BSN, PHN, is education coordinator for Hospice of San Joaquin in California. She is also a geriatric trainer for the End-of-Life Nursing Education Consortium (ELNEC), which promotes education in geriatric nursing and end-of-life care.

Care giving can be a daunting experience, especially is you have young children who require your attention as well. And, it sounds like you and your siblings are trying to do all you can to make your mother comfortable. I have a few suggestions for you:

 First, contact the hospice social worker assigned to your mother. The job of the social worker encompasses the health of the family unit. Express how you feel, and ask for his/her suggestions.  Secondly, ask your social worker to assist you in applying for Medicaid, which is the federal program that helps people with limited funds. Your mother will need to "qualify" under their guidelines.  Thirdly, talk honestly and openly with your siblings (include your mother). Get their feelings about placing your mother in a nursing home, and how you all intend to pay for that care, if necessary.

Remember, when you elected to have hospice services her physician stated a life expectancy of approximately 6 months. Cure was no longer an option. Sometimes, people live beyond this 6 month prognosis. And, rehabilitation in a nursing home was not an option either due to her compromised strength and difficulty breathing. That is what is meant by "comfort care."

When a patient goes to a nursing home, without the intent of doing any therapies (rehabilitation), they are placed on what is called custodial care as opposed to skilled care. If your mother can qualify for Medicaid, the cost of room and board may be paid for her custodial care. If she does not, then the cost falls to the patient and family. Hospice services through a not-for-profit organization should not cost you anything; but, she must be on "custodial" care to receive hospice services. (That simply means she isn't being sent off to physical or occupational therapy; she still would receive all the care any patient receives in a nursing home.)

If you live in California, Medicaid is called MediCal. People are allowed to have certain assets, but your social worker will know the specifics. A nursing home, located between you and your siblings, may be the best option for you now. Your mother will be cared for and safe, and her needs for oxygen and energy conservation will be met. The hospice team will manage her care and keep you informed and updated as her disease progresses.