My 96 yr old mother is home with 24 hr CNA care and is being discharged from hospice, no longer meets criteria. She has dementia, great difficulty walking (broke both hips w/in past 3-4 yrs), past diagnoses of CHF, AFib. Her wish is to go at home (even has it in her POA to prevent being put in NH) and I have been working to keep her at home. Since she is losing hospice, she is losing her medical care, esp for prescriptions (BP med, potassium and magnesium) and her PCP has basically washed his hands of her; tells me he hasn’t seen her in over 2 years and he is not a gerontologist. I am out of state and have no way to get her to a doctor. Have looked into ambulance service but she cannot walk down stairs to a wheelchair, service won’t bring her out. Am not sure how to handle physician care and prescription coverage going forward - any suggestions would be greatly appreciated!!
It will be even more savings over 24/7 in-home care (which will extend how long she can afford to pay for care AND it is FULLY deductible*.) I use an IRS Enrolled Agent to do her taxes, and because the facility costs more than her income, plus trust money, and it is a medical necessity, it is 100% deductible, so she pays no taxes now. I don't have to nickel and dime it all, just request a printout from the facility at tax time. I do collect her other medical expenses, just in case, but it is probably overkill!
You could just tell her it's an apartment, as it isn't set up like a NH. Not all are alike, so you would have to search around and check several out first. Not sure where your mom lives, but the least expensive NH in our area was $15k per month. That is almost double our mother's MC which is just shy of 8k now. You could always use a fib, like the CNAs are taking a long vacation and have no backup, so she needs to stay in this place for a bit and just keep delaying the move back!
Some Medicare Advantage plans do offer (practically push it down my throat, I just ignore them!) a home visit, free/paid by Medicare. She will need a doctor at some point, to get renewals on Rxes. Perhaps the hospice people can refer someone? Alternatively, some AL/MC facilities have in-house doctors who could take care of that, so she could have 24/7 help, a safe place to live, perhaps a doctor, at least one nurse in addition to CNAs and not have to move to a NH. They typically have a transport as well, so if she needed to go to the hospital, dentist, doctor, they could take her. Since you are not local, it would require paying for the transport plus an aide to accompany her, but it would be a LOT less than hiring a private transport/ambulance. This would relieve a LOT of pressure on you and make coordinating everything easier for you.
It sounds like the only family "dynamic" is mom insisting no NH. Well, AL/MC is NOT a NH. Brother has washed his hands of it all, so he shouldn't object. That leaves you. Hopefully you are the assigned POA, so that you can sign all the paperwork as her representative.
* Regular AL is NOT deductible, only the various nursing care might be, same as living at home and hiring CNAs - some is deductible. MC is fully deductible.
(P.S. "...my husband who pushes me to honor her wishes to die at home"... hmmm, suggest he go live with her to 'honor her wishes' or have him take over ALL the footwork needed to take care of things, and you sit back and sign the paperwork??? Unless he has a way to ensure everything runs smoothly, he should have no say here, but rather should be supporting you.)
You stated you weren't happy with the previous Hospice Company anyways, so why not try another Hospice Company. You could invite a different one out and see what they think, and if they can find the necessary diagnosis to qualify her continued care. Then, it would be on them to get their Hospice Dr out to the house to evaluate/qualify her (here in my state, a Hospice Dr must come to the house within one on service), and to review her medications to see if any one of them could be discontinued.
You most likely will have to be on site for the initial set up and to get things going, for if she doesn't qualify, you can then find a Dr who can do house calls, and to see what other in home care she might qualify for. Also, a visit from her local AREA'S AGENCY ON AGING, you will find them through her County, just look them up online. They will send out a Evaluator or Social Worker, and advise you of what would be best for her ongoing care and help to set her up with those services, ie: meals on wheels, transportation to and from Drs visits, bathing aides, chore services, adult day care...., plus they also may be able to be a mediator for you, to help you to convince your Mom that a Nursing Home might be the best thing for her.
It must be extremely difficult to manage her care from afar, so it would be to your (and your Mom's) advantage to make a trip to visit her and to be with her while you get some very important care set up going forward, not that you haven't done as well as can be expected from afar, but things can really change, especially with spiralling health and aging, so boots on the ground and in person, will really help to get her the best care possible. Good luck and believe me, I Totally get the Smuckers 100 joke! Lol!
So does she live in an upstairs apartment or just have a few stairs to get to ground level out of her house? If upstairs apartment, and you are seriously trying to get her in her own home, it's time to move downstairs anyway. A fire or other emergency would have her in quite a predicament. I would call another ambulance service. Medicare will not pay for non-emergency transport, but private pay transport should be able to get one of the same ambulance companies to take her down stairs just as they would for an emergency situation. They have gurneys and chairs to get people downstairs.
Does she have the finances to pay for 24/7 in-home care? If not, you need to ask hospice doctor to help you move her to another type facility. Maybe assisted living, maybe nursing home depending on her needs and her income.
Call her doctor (or find a new geriatric doctor) and let them know you have to arrange medical transport to ensure they do all testing in one visit. She can't return week after week for different tests. She absolutely has to have a doctor if she returns home. You might has hospice doctor if they know any that do home visits - some places actually still have drs that do that.
I dealt with both parents, by myself from 3 states away. Went through all the same crazy-stubborn-refuse to move stuff. It’s a long story but I finally got them into assisted living, screaming and kicking all the way.
Your mother, and apparently some members of your family are expecting you to create a staffed nursing home for one women and run it from afar. Take it from me. It’s not possible. No way I could have managed such a nightmare of scheduling 24/7 home care, transport to docs, meds and done maintenance on an old house.
I don’t know how you’re going to do it but a nursing home is the only way. If you’re hubs or family think otherwise then they should take over.
And why is a woman of 96 (may she live for ever) who has until recently been in hospice care still being prescribed active treatment for high blood pressure?
The aim is a soft landing. That means stopping any medication which is not of clear benefit to her, and providing palliative care as close the ideal that she had in mind. So... what do you need the physician for?
I am not, in case it sounds like it, suggesting you stop the bp meds *in order* to increase her blood pressure and kill her. The point is that stopping the meds probably won't make anything like the difference you'd think it would.
I tell everyone to stear clear unless they need more crap on their plate.
1 - Round the clock caregiver(s) - check to see if her insurance/finances will cover this. There are plenty of reputable agencies that can give you quotes for this kind of care. Be aware that it is expensive but not as expensive as a residential facility.
My mother-in-law in Hawaii is using this option and has a live-in caregiver that is being paid with her deceased husband's life insurance. We live in Florida and other son lives in California. Her wish is to stay in Hawaii.
2 - Move her to you, or in with you. You can arrange for sitter/home health care aide in the home or adult day care program in a facility during the day. Unless she wanders at night, you probably won't need a sitter at night. Most sitters are paid at least minimum wage.
Has she been receiving bp meds for the last 2 years? I wonder if she really needs it. I would be surprised if hospice was providing life sustaining meds. Anywho, you only have 1 that needs a doctor involved. Maybe do some research on natural bp lowering foods or supplements and then you can forget the doctor completely. If needed, ER visit via ambulance.
Contact an insurance broker about getting her a supplemental policy. This will pay the 20% or a portion of that Medicare doesn't pay.
As I think has been mentioned her medical insurance coverage shouldn't change and while Hospice does just provide many supplies they are paid by medical insurance, presumably Medicare in this instance they just do the work behind the scenes for you and I think often pick up things we don't get covered on our own as easily. But her benefits should at least go right back to where they were before she went on Hospice. Again the hospice people should be able to help walk you through this, they know families aren't typically prepared to think about taking care back over once making the decision to turn it over to Hospice but it does happen and they should be prepared to help you through that just as they are through the end of life.
It is not OK for physicians to "abandon patients" and this word, abandon, is the exact word you need to use. If she needs a gerontologist then he needs to refer her to one. You can work from there on placement.
This will not be easy to handle from out of town.
why is she losing her medical care? She still has Medicare, correct? And a supplement or Medicaid?