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Just got the news today that my dad (83) has lymphoma that is advancing rapidly. Doctor says that typical treatment would be too much for Dad and recommends hospice care. He gave a “low number of months” as an estimate. My dad wants to go home. He has been in a facility since mid-October (hospital then rehab then better hospital again for diagnosis).


My mom needs a caregiver herself. Is there a way to get in-home care for them both during this time?? What will Medicare pay for?

You mention that your mom needs some care but she will be starting dialysis. That is a huge red flag that things will ramp up. She will need transportation 3 times a week with 4 hours of treatment. Does she have transportation and will she need someone to stay with her afterwards if she has some post dialysis symptoms. Your FMLA will be too short lived. How can your brother be entirely be responsible for both Hospice and transportation.

Medicare will not pay for custodial care. Plus transportation services are not covered. There will be some point when 24 hour care is required for dad. Private care will cost more than facility care. If you and brother do not share in this, it could cost more than $200 k for a year. It is also not feasible if brother needs to work and then come home to 16 hours of more care. It sounds best to liquidate and if they can afford assisted living to get this going. Look for a place close to a dialysis center. It sounds like your brother will be responsible for the transportation part. I would seriously sit down with mom's nephrologist to look at feasibility of dialysis on older patients to get a feel what you all are in for.
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Reply to MACinCT
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My dad was on home hospice care, and I still had to move in with him and my mother. I cared for both myself except for the weekly visits by the hospice nurse (never 2-3 times as stated by others). Finally, two days before my dad's death I hired a caregiver to help out overnight because I wasn't getting any sleep. She ended up letting my dad get out of bed to go to the bathroom when he couldn't even stand up any longer, and we had to call the fire department at 2:30 in the morning to get him back in bed again. I called the hospice the next day and said I couldn't do it any longer, and they sent the nurse who stayed until he died about 24 hours later.

I'm glad I was able to help my dad die at home. He was never in a nursing home or hospital, as he went from seeming the peak of health and self-sufficiency to terminally ill practically overnight. Nevertheless, the eight weeks I spent taking care of my parents and then just my mother darned near wiped me out.

I assume you want the best for him, and the best for him might be a hospice facility where he really will get 24/7 care.
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Reply to MJ1929
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Hospice in the home leaves most of the responsibility to the caregiver. Nurse only comes 3 or so times a week. An aide same think. The Care taker is shown how to administer the meds and such.

I think your idea to liquidate assets and get them even in a AL would be good. He can have Hospice while in an AL. When Hospice is not there, you still have the facilities aides.

Medicare will pay for Hospice care (not the cost of the facility though) but they don't pay for in home caregivers.
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Reply to JoAnn29
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Thanks for the insight. My mom is not terminal but she needs someone to look after her due to mental frailty, mobility, and soon dialysis issues.

i really hoped we could have brought dad home for his last days but I live in Virginia. My brother is local but has a family and career of his own to manage.

I could take FMLA but I would have to leave my kids behind in VA with their dad. That is not an acceptable option.

Right now they are on Medicare with the part B and D insurance. It looks like we have to start liquidating their assets and getting them into a home that might be able to take care of them both.
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Reply to pillowforts
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Basically no. Medicare will not pay for home care. Your dad can have home hospice but they will not provide a caregiver. They will provide a CNA who will cone out several times a week to bathe and changing bedding but they really don’t do much else as far as hands on care goes. A nurse will come out weekly to check his vitals and order medication & any durable medical equipment he needs (Commode, hospital bed, swivel table, etc). If your dad comes home on hospice then the reality is, family is going to have to be prepared to take care of him to an extent. What igloo said is pretty much spot on—if your mother needs care herself than home hospice isn’t going to work unless you or another family member moves in. Even if your parents qualify for a home health aid through Medicaid, they will only be there for a few hours a day so someone will have to be home in the evening and all night. There’s also the issue of attendance, if you have a caregiver through Medicaid you will have to be prepared for the caregiver to call in sick or just not show up. There’s also the issue of COVID, bringing in outside caregivers is a risk to your elderly parents.
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Reply to worriedinCali
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Medicare part A has hospice 100% benefit, in home or in facility.
Your dads MD or MD at the facility write orders for a hospice evaluation.

Hospice is a seperate company, bills separately to Medicare. It’s “self directed” in that - in theory- your dad can select the vendor. In reality it’s limited to the handful of hospice that work the facility he’s in now or those that work in the neighborhood where your folks live. There may not be much choice, especially if your dad is on serious pain meds as some hospice just won’t do those clients due to risk.

The issue imo will be for inhome is that hospice worker or volunteer is limited to coming in 2-4 times a week, perhaps 2 -4 hrs per visit. Thier time will be abt health checks, bathing, helping them eat a meal, maybe helping to make that meal, perhaps putting fresh bedding on the pneumatic bed that hospice ordered for the patient. But other than those brief visits, your mom & you & your family are on your own for all other care time. Unless y’all hire inhome caregivers.
Maybe if he were to apply for Medicaid, Medicaid could provide for additional in home care. BUT they too will have limits on hours. Inhome cannot exceed # of hours that push it into over 28-32 or so hrs per week as if it’s more than that, they are showing to be “at need” for full time care. Like placement in a LTC facility. It’s not cost efficient for in home plus inhome cannot meet the level of care needed. Comprende?

On your mom, she would have to show her on “at need” situation to become herself eligible for hospice. The rub would be that if both are in home hospice, hospice will need someone not on hospice to be there for oversight. So you or another family member will need to live there.

Realistically the best way to have 24/7 oversight - which probably is what he needs - is for him to be in a facility.

As an aside on this, my mom was on hospice for 18 l...o...n...g months at a NH she had been living at (she fell pulling her wheelchair behind her on way to arts n’ crafts, what can I say). Mom stayed at the NH and was 100% bedfast & between hospice and NH staff got really lovely care. Hospice was mediCARE benefit but her room&board at NH was LTC Medicaid. My MIL - a most difficult person - went into hospital from her NH as very ill. She was on LTC Medicaid at the NH. Hospital discharged her to an specialized facility that was also free standing hospice adjacent to a hospital. She was very ill, extremely septic, cascading organ failure and died abt 3 weeks after exiting the hospital. Her hospitalization and hospice were Medicare part A. MILs path was kinda unusual as most of the time they go back to their old NH and back to LTC Medicaid & off Medicare. Mil had mediCARE coverage because she was super septic sick on discharge; had she lived beyond a month in hospice, imho, she would have been discharged back to NH LTC placement.
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