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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!!

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 29, 2019
I agree but see previous post. Also have family politics to deal with.
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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 2, 2019
Perfect reply!
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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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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 29, 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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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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To get your mother to a doctor's appt., you don't want or need an ambulance, but rather a medical transport service. Such a service will get (carry) her down the stairs and into the transport vehicle and after the appointment, back home. I had to use one myself when I was not allowed to walk up or down stairs because of an internal fracture. The transport service usually is not covered by insurance (but double-check if she has a Medicare Advantage plan), but if you are itemizing her medical deductions, it does count as a medical expense. You may be able to negotiate the cost a bit with the company, as well.

BTW, while the routine home caregiving by aides is not covered by Medicare, if part of the work the caregivers do is "nursing care," even though not provided by a nurse, the portion of the cost of the caregivers that is for "nursing care" is also deductible. I kept these records in a spreadsheet for my mother's care for over 2 years. I wasn't there, either, but I was able to guesstimate that portion, and that was all the IRS expects. I also kept my estimates lower than her accountant thought I might have done, but I wanted to be sure I could justify it. My mother was not audited, but I was sure she was safe if we had been. You can find the info in the detailed IRS info on determining medical expenses.
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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 29, 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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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 29, 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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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 9, 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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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 5, 2019
Great advice:)
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