I had to quit my job and move from Phoenix back into my parents house to provide care for my terminally ill father. Is there a Structured Family Caregiving program available so that I can still pay my own personal bills? From what I understand about Illinois the person receiving care must be eligible for Medicaid and deficient in at least 3 of 5 activities of daily living: dressing, bathing, grooming, using the toilet, eating, walking, or getting in and out of bed.
This definitely includes my father. Right now we have a Nurse come once a day. My mother is also a senior citizen and can only provide minimal care; so she takes the "day shift" while I stay awake from about 7pm to 9am to continue his overnight care (medications all night, IV fluids, feeding tubes, rotate every 2 hours to prevent bed sores, aid in getting to commode etc etc...)
It's a full time job. He's got to be under 24 hour supervision. Is there any financial assistance available to me? Technically I am now an Illinois resident. I've been here over a year, returning to Arizona only once to put all my belonging into storage.
But your parents can pay you to caregive for them. Your parents have some sort of income, they each have SS monthly income unless they are the small % on RRR or state employee pensions. Perhaps they have other retirement income, have investments to draw from. They “pay” you from these. To avoid future issues should they later on apply for Medicaid, it needs to be done via a Personal Services Contract drawn up by an atty., so that it meets community standards for caregiver pay. This site has articles on this.
Saving for a rainy day has passed, it’s raining and your soaking wet.
Really to me it’s better they use their funds now and pay you. Otherwise it’s all going towards a spend down to become eligible for Medicaid eventually cause - in my experience- unless they have very significant assets, if they live long enough, they will run out of $, the caregiver will run out of ability to manage their increasing level of care and then they apply for LTC Medicaid in a facility.
As far as what IL offers for community based programs, contact your Area on Aging to see what’s offered within your region. Whatever the programs are, each of your folks will have to be evaluated for level of care needed. I’d bet that your dad as you described his situation will be evaluated to need 24/7 care in a facility; your wanting him to stay at home isn’t realistic for how state programs pay for in home care. It can be difficult to accept this just as it can be difficult to accept that you chose to leave AZ & move to IL.
The trend nationally is for PACE type of day centers where they go 2-4 days a week & usually they have to be “duals” (Medicare & Medicaid) as all costs are covered between the M&Ms. Your post reads that you are hoping to find something in IL that’s like CAs IHHS program - InHome Health Support System - if so that’s would be a state program funded via Medicaid waivers, so ask the AoA about waiver programs in IL. Btw AZ has a program similar to CAs IHHS. Medicaid programs are up to each state to determine just how & what to spend Medicaid $ on besides skilled nursing care aka a NH.
The nurse may have suggestions for you about programs in IL as well. Try to have a unemotional talk with her regarding dads level of care and what the near term likely will be for him & if a facility may better suited for his care needs and any insight on your mom’s health as well.