The visiting nurse came today. They want to set up home health aide 3 hours a day 3 days a week and a physical therapist. She can use this help, don't get me wrong, but I can't help but think we will need more care as time goes on. I do not want to exhaust her Medicare services now and then not be covered later when she really needs a lot of care at home. Any insight would be much appreciated.
Not Regular Medicare but hospice?
Medicare doesn’t really pay for inhome health care services; IHHS is usually done via Medicaid. She’s Stage 4 so I’d think she’s viewed as less than 6 months, so eligible for Medicare hospice which covers in home care.
Now rehab benefit Medicare will pay for; it’s usually written as discharge orders from a hospitalization. Usually rehab done in a SNF that has a rehab unit, so they go to a NH rehab.
Could it be that this is what was done for rehab BUT BECAUSE of Covid, it’s happening via in-home PT visits instead? I’d suggest that you try to clearly find out exactly just which mediCARE benefit she is on. It will help you understand better what Medicare will or more importantly will not do.
Usually PT stops if they are not sufficiently progressing. The standard order is for 20/21 days & covered at 100% then at 80% up to 100 days. But most don’t make it to or past the initial 20/21. If it too painful for her or she’s noncompliant for doing PT, the PT will write this in her chart & Medicare will it stop PT in pretty short order. Like in 24-48 hrs.
It’s ime not that she’s going to “exhaust” MediCARE. It’s going to be that the level of care that she needs will go beyond the # of hours per week that is allowed under a Medicare benefit. If it’s hospice, 3-4 days a week is quite a lot of time. My mom was on hospice for 18 mos but in a NH, it was at first x3 then moved to x4 her last final couple of months & 3-4 hrs per day. But it was never ever going to be 24/7 care done by the hospice co. It was the NH that was there to provide all the care and oversight above when the MediCARE hospice team came in. I will say that for mom the NH staff & hospice staff really worked well together. Especially for bathing team & switching out linens & getting speciality feeding done. Hospice is quite amazing.
That nurse that came to see MIL did a “needs assessment” on her. Often it’s done by a RN & SW duet as SW looks at the living situation while RN looks at health issues. It may have been that you, or your hubs or MIL herself answered some housing issues so that SW evaluation was done that way. I’d be concerned that the SW answers may not be truly realistic for what y’all can do for weeks & weeks & weeks.....
AND
then problem imo is going to be that eventually she is going to need beyond 3 x a week 12 hrs of care and those extra hours needed - if family cannot realistically provide them on site with 24/7 oversight needed - will be more than ever allowed by Medicare. In home care cannot go over a set # of hours.... maybe 28-30 hrs per week.
SO
what families end up doing is hiring caregivers thru an agency and either mom pays for this from her income (like her SS$) or her savings, or family pay for it or they move into a NH as family just cannot do the care, or become burned out in caregiving. NH has the staff to do 24/7.
Sometimes, if they are especially ill, they might be able to go into an in facility hospice. My MIL had this, she became suddenly very very ill at the NH, went to ER and then hospitalization. She was super septic and on black box drugs, She transferred to an in unit hospice in a building adjacent to the hospital. She had cascading organ failure atop everything else & died within 3 weeks all under a Medicare benefit. In unit hospice facilities are specialized care. A lot do cancer care, MIL was mainly under 50 with end stage cancers. As your MIL has stage 4 cancer, I’d ask if should she need it if there might be a way to have her placed into one that mediCARE will pay for. Often Kindred Hospital group do this type of care.
Good luck, it’s a lot of info to understand. Try not to get overwhelmed. You & hubs take time for yourselves too.
I advise you to talk to friends, go on Yelp (a surprisingly good resource for this), and get recommendations for a hospice agency to help with your mom. I don't know the specific of her case, obviously, but I doubt there's much medical treatment to do beyond making her comfortable.
If she's to stay at home, someone will need to be there with her as much as possible, because this is a scary time for her and you never know what situation may arise. I moved in with my parents when my dad was diagnosed with inoperable cancer, and while my dad didn't really have many issues other than an inability to eat, he did have some vomiting that came on him very suddenly a couple of times. When I could no longer do it all myself and had spent two sleepless nights next to his bed, I called the hospice agency and they sent nurses who were with him until he died a day later. From diagnosis to the end was six weeks.
Just call one of these agencies, and they'll take everything from there. They are there to help the patient AND the family. You aren't required to know how to do all of this.
The most important thing is to "get her affairs in order." That means powers of attorney for medical and financial decisions, will, and trust (if necessary). Call a trust and estate attorney immediately after setting up hospice care, if not before.
Whomever is POA should do that as soon as possible to give you a reasonable view of expectations. I am so very sorry for this diagnosis. This has to be very much a shock to all. I have a young friend just told today that she has 2 to 6 months left now that a breast cancer has metastasized to brain in an untreatable manner. Such news is difficult to absorb quickly.
I would contact Hospice (if MIL will not be seeking treatment for this diagnosis)
You would get a Nurse that will come weekly. A CNA to help bathe, dress, do a few chores as well as order supplies 2 times a week. You will also have the the ability to have Social Worker, Chaplain as well as other services. You will get all the equipment that you will need now and later on. You will get all the supplies you will need as well as medications delivered to you.
All this is covered by Medicare and other insurances will also cover Hospice services. If you do not feel ready at this time to have Hospice contact them anyway and "interview" them and see what services they offer and when you are ready they will be there.
My heart aches for you and your family at this time. I hope you have all the family support as well.
"According to the American Cancer Society's estimates for 2019, about 57,000 people in the United States will be diagnosed with pancreatic cancer and 46,000 people are expected to die of it. The median survival rate for stage 4 pancreatic cancer is between two and six months."
Why isn't hospice being called in now? How is PT going to help with advanced cancer of this nature? That doesn't make sense to me. Once hospice gets involved, Medicare covers the costs entirely.
In any event, Medicare benefit do not get exhausted........the patient receives some level of care until death. I wouldn't worry too much about it, but you can always call their 800 number to get a breakdown of what IS and isn't covered under her plan.
Wishing you the best of luck in such a stressful situation. Sending you a hug & a prayer for peace.
If Mom is being sent home on regular in home with Medicare paying, she will need to show improvement for Medicare to continue paying. If not improving, will be switched to Hospice if client fits the criteria. Medicare does not pay for round the clock care. I think your doing pretty well getting 3 hrs 3 days a week.