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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!!

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Hi. It sounds like there are two issues: 1) finding a health care provider who will tend to your mom's outpatient medical needs and write prescriptions; and 2) getting your mom to a health care provider (or a health care provider to her), because hospice workers will no longer be seeing her. Is this accurate? Does she still have Medicare or other health insurance?
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EM0914 Aug 2019
I have found a medical service that is a subscription where you pay per month fee and you get the in-home care you need. Too moving parts to keep going from a distance with no help from my one in-state sibling. I’m getting burnt out from managing this from 800 miles away, have been doing this for 3-4 years now, including multiple helicopter trips of 4-5 days to manage physical things that can’t be done over the phone. Did not expect her to live til 96. Should have known I was jinxed when my husband used to joke that we would see her face on the Today shows Smuckers 100+ birthday lists.
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The POA document doesn’t prevent her from being put in a nursing home. All it does is state her wishes. If she can’t take care of herself, doesn’t have family that is able and willing to give up their lives so she can stay home and she can’t afford full time caregivers, then assisted living or a nursing home are always an option.

why is she losing her medical care? She still has Medicare, correct? And a supplement or Medicaid?
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EM0914 Aug 2019
Unfortunately, she can afford to stay home for the time being but at $20k per month to maintain 24 hr care, food, home maintenance, she is blowing thru it rather quickly now. She has both Medicare and Tricare, which pay for everything medical, hospital, hospice, but not the 24 hr CNAs, which are considered non-covered “personal care”.
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She needs to be in care now. There is quite honestly no way around that that I can imagine.
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.
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How long has she been on Hospice and what has improved so much that she no longer qualifies? I don't think Hospice will just drop her without making sure her care is transferred back to PCP who should have been involved during there time with her anyway, I think but if he is going to be so difficult I would talk to the Hospice people and tell them your dilemma, they have been involved in her care and a part of the determination she no longer qualifies (needs Hospice) I would think they would have recommendations, maybe PCP's they work with and know can take over her care appropriately. Typically on Hospice Care is when certain medications meant to prolong life are stopped, was he on any of these and what is your plan for that now? Given some of his issues, heart in particular does he have a cardiologist and wouldn't they be the ones to prescribe for the Afib, BP and anything else for CHF?

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.
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If he has not seen her in over two years her PCP is not abandoning her. If he doesn’t do home visits it’s not his responsibility to visit home bound. The facility discussion for care is past due. We can’t always get what we want as we age, we get what we need.
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EM0914 Aug 2019
I agree but see previous post. Also have family politics to deal with.
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You don't need a prescription for potassium or magnesium, go online and order those.

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.
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EM0914 Aug 2019
I questioned when she went into hospice at the beginning of May, whether she needed to maintain her meds. At 96 and with them admitting her, seemed stupid to keep “life-sustaining” meds going. Their response was that they had talked to her PCP, he said to continue them. I did, at that point, say to the nurse that I thought the hospice doctors were in charge of medically and why was her PCP consulted or even part of the situation, especially since he does not really want to. Not happy with this hospice group and if things go downhill, I am going to force the NH. Have family politics to deal with: my husband who pushes me to honor her wishes to die at home; my brother, who is the ONLY one she will listen to, who won’t talk to her and convince her on the NH and basically washes his hands of the situation.
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You might want to do a computer search on "Senior Care Managers" or "Care Managers" and mention your state/city location. Care managers are not a free service. If you are lucky and there are care manager services in your Mom's area, they can be extremely helpful in identifying resources that can provide the proper care for your loved one. Another source of information might be the Office on Aging (or similar name) that can be found either in the local government or state government directories.
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EM0914 Aug 2019
Thanks. After I posted this, I did go into her state’s Dept of Elderly Affairs. I am finding out tomorrow when she is discharged from hospice and how many months prescriptions they will set me up with. They are giving me info on companies that do pill packs since her CNAs can’t put her medicine together for her. I have spoken with a Care Manager in the past but they have only been so helpful. Everyone tells me she needs to be in a NH.
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Bring her to your house. You can set her up with a doctor & learn how to do the rest. Respect her wishes. Maybe she'll let you do adult daycare in a nursing home so your days will be available to work or just to have your own free time.
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MaryKathleen Sep 2019
The word "Maybe" is a huge one. Suppose she doesn't, then what? I don't think she should move her mother into her home.
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Look for any department of aging with her state and city for resources. You really have 2 choices:

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.
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dwilkrn Sep 2019
I disagree with costs. Having caregivers around the clock will run about $20,000 a month. Facility costs can vary but generally runs from $3000 a month and tops out at about $9,000 for total care and severe dementia (which we have for our Mom).
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Some Medicare Advantage plans provide in home , or in facility, MD or PA visits. Check into this option.
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EM0914 Sep 2019
Thanks for this idea, Judy. Will check into it.
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A Place for Mom is a free service we have found to be very valuable in exploring and recommending best options for your loved ones.
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Isthisrealyreal Sep 2019
NOT! I found a place for mom to be ignorant, expensive, uncaring and rude. Then I had to deal with phone calls from places that they sent my information to, even after I told them that the places they were recommending were way out of my dads price range by a long shot, I was then insulted by the witch that told me I needed to fork over the money to put him in a facility that was hugely overpriced.

I tell everyone to stear clear unless they need more crap on their plate.
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So I’m assuming your husband is willing to assume her round the clock care when you bring her home to him, right?
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rovana Sep 2019
I don't think the idea is to bring her to OP's home, but back to mother's home. But even with 24 hour CNAs, the amount of work to coordinate this and make it feasible is huge.
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As you have discovered, Medicare will pay for medical expenses but not for personal care. That is out-of-pocket.
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I should argue about hospice, myself, and try to get her readmitted.

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.
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So difficult when you are not nearby! Some good suggestions below. Ask for help and advice wherever you can get it.
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EM,

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.
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dwilkrn Sep 2019
Perfect reply!
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You say 'is home' and then say her wish is to go home...kind of confusing. Call the hospice dr to let him know the situation. Cannot get downstairs to get to a doctor appointment and has not seen a doctor in 2 years to get continued meds and care. (How did she get into hospice without seeing a doctor?)

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.
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Countrymouse Sep 2019
No: the OP says her wish is to "go at home" - go, as in pass, as in pop her clogs.
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Thank you to everyone who replied so far. My mother lives in a one-floor home (stairs out of front or back door, into garage), does have 24/7 in-home CNA care and has the means to stay home current (costs $20,000/month, NH would be $10-12,000, stretch her money further). Her current PCP recently refused to care for her anymore. Hospice was started after a hospital visit for what was thought to be pneumonia (was just a bad cold). All is still a workin progress but thanks for all the good suggestions.
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So let's see, she is 96 years old, she has severe mobility issues, Dementia, HBP, CHF, and A-Fib, and she Doesn't qualify for Home Hospice? That seems very odd to me, not that I am questioning you, but their qualifying criteria. Is it possible that she would qualify for PALLIATIVE CARE? I would definitely inquire about that!

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!
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sudalu Sep 2019
Great advice, Staceyb2! I, too, get the Smuckers 100 joke. Made me laugh. My mother (98 and currently on Hospice) will definitely have her face on that jelly jar!
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To get to a hospital, EMS provides transport down steps. They always did for me - never did they not place me on a back board and carry me down a flight of steps. And why isn't she qualifying for said services? Something seems amiss.
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worriedinCali Sep 2019
But that’s EMS. The OP is talking about private ambulance service for doctors appointments. Private ambulance companies won’t always carry the patient up and down the stairs.
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Time to Allow Medicaid to Kick in if she is Now Low on Funds, hun. Place her in a safer Fcility being you are Out of State So non one has to worry over her nor She even Worry over Her...
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Contact Medicare and see what they can suggest.  You may have to get guardianship over her.  That will get you some leverage at that point.  Good luck!
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Why always coming back to NH? Why not Assisted Living Memory Care? Although she has other medical conditions in addition to the dementia, it doesn't sound like she needs a NH (and doesn't want to go there.) NH is more for people who need specialized nursing care. Clearly your mom doesn't, as she only has 24/7 CNAs. There are many in mom's AL/MC facility who are wheelchair bound, use walkers or walk unaided, and many who have various other medical conditions as well.

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.)
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LadyJ67 Sep 2019
Great advice:)
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