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Ok so I will say first thing, I have Medical Power of Attorney for my Mom, and she lives with me and I am her caregiver. She was diagnosed with Lewy Body Dementia, Parkinson's Disease, and has had 3 strokes. She requires assistance with all daily activities, is seriously impaired. We have had multiple falls, and they are increasing. She has reached a point where I am not enough to keep her safe, and my own health is now suffering as well. I need to get her into long term care as soon as possible, and even have a facility picked out and luckily have a niece by marriage that is in social services at the facility. The problem is my siblings and I want to get our ducks in a row before talking to Mom. We do not want to cause undue stress and fear for an extended period of time. She is easily upset and agitated and it sends her into a decline. I tried to get an appointment either in person or phone to speak to her doctor alone and tell her all of her many symptoms I am now dealing with and to get an order hopefully for the facility. The doctor had her nurse call and refuse me and said without guardianship not just medical power of attorney she can't lawfully see me or talk to me alone. I thought that medical power of attorney was for those very things, that the person with medical POA had say over medical treatment and could talk to the doctors? She told the nurse to tell me if I am thinking of long term care to contact social services at whichever facility I want. So my niece at the facility faxed info to the doctor telling her of Mom's condition of decline and our concerns, asking doctor what is needed and requesting a medical order, medications list, etc, etc. That was last week still no word to me or the facility as of yet. Afraid the doctor is going to refuse that too. I feel like I am hitting a brick wall. Hate to call the doctor's office, I felt like I was being talked down to with this disapproving tone that I am doing this without Mom present. I am just trying to get things moving without stressing her too bad. She is very emotional and I do not want to set off a really bad decline, or her to have terrible emotional fits that upsets the entire household for days or weeks with nothing definitive set in motion.

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This is weird. What on earth does the doctor think a medical POA covers?

Does the doctor have to refer Mum to the facility?

Which country are you in?

If the US, can you call APS and tell them you need help?
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Amikkwe Sep 2020
Yes we are in the US. and as for what I was told by my niece that is in social services at the nursing home, she was the one that told me to contact her primary care doctor to get an appointment or phone call to talk to the doctor alone since I can't talk freely in front of Mom about her symptoms as she gets very upset, and embarrassed if she catches on. Niece said the doctor would then give an order for the facility. So I am not entirely sure. This is all so new to me.
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You can't talk to the doctor ALONE. You can take your mom in for an appointment and slip the nurse a list of mom's symptoms so that the doctor can discuss placement with mom.

For what it's worth, if mom is easily agitated and stressed for days about things, she should be evaluated for meds for that, in my opinion.

My mom's anxiety about small issues was the most debilitating feature of her dementia. Getting her on the right combination of antidepressants was extremely helpful.
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She can talk to him alone if she wants to pay for his time. He can't talk to just her and bill Medicare under Moms name.

Does your POA say its in effect when Mom can no longer make informed decisions. Some need a Doctor's note making it effective. Does Dr/s have the POA on file? If not, give them a copy. As medical POA he can talk to you.
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shad250 Sep 2020
Woman doctor
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You want to do this without stressing out your mother and creating ructions. I'm sure anyone can understand that wish, including your mother's doctor. But there's a but.

Another way of putting what you want to do is that you want to go behind her back, then spring the arrangements on her when it is all-but a fait accompli, and you are asking her doctor to join in the conspiracy. Not gonna happen.

You are not going to get your mother's doctor to agree that it is in your mother's best interests for her future not to be discussed with her at the planning stage. Your mother is entitled to an opinion on this, and would be even if you were her guardian.

So. To get to the nub of it. What is your mother's view of what would be best for your mother's long term care? She may have dementia and she may be emotional, but she still has a view. Gently try to get her to talk about it - and let her tell you, don't comment on what she says or shoot her down - and then you can broaden the discussion out from that starting point. What her doctor objects to is your attempt to exclude your mother from a process which is all about her.
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shad250 Sep 2020
..and Doctor cut out of billing for seeing her,
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Doctor wants to see mom, because she would be charging for that visit. Talking to you alone? LOL she can't charge for that; that would be her personal time.

She probably agrees with your assessment, but again it's about the money. She knows if she were to sign the order for placement, she would not longer be her PCP, unless she was also on staff as the facility doctor, so no more seeing mom unless she would be brought back to the hospital.
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Amikkwe Sep 2020
And I am even willing to pay for such a visit, is the bad thing. I don't expect her to do it for free.
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This is one very exceptionally BAD doctor. So you will need to change. I agree with the doctor in one thing only. The facility will have an administrator or a Social Worker. Tell them that you wish to hook up with whatever doctors they recommend to care for your mother now. My brother, when he went to assisted living, had a choice of TWO groups should he wish groups that typically has nurse practitioner who visited patients in care. These groups were very used to dealing with patients in Assisted Living and Memory Care.
The doctor is wrong about your Medical POA not being enough for the doctor to speak with you, as well. However, there is NO REASON to see that doctor. That doctor doesn't need to give you an "order" for a facility. The facility itself will have MD assessment of your Mom. You, as her POA will be there to help answer questions. Then that new doctor will order the records from the old.
Do not speak to people who speak down to you. Tell them that you simple have no time to be talked down to and will have to change doctors immediately and complain to the medical board about this doctor and his or her refusal to discuss their patient with the patient's POA for health care.
So sorry about your Mom's diagnosis. My bro had both early Lewy's and then a benign tumor over the medulla. Together they just about ruined balance. He worked hard with PT to stay on his feet. Your Mom has a dual diagnosis as well, as both Lewy's and Parkinson's messes with the gait. Wishing you good luck and hoping you will update us. The Lewy's will also affect mentation, but it can go up down and all over the place unlike other dementia's that go down in stairsteps or in slow but inexorable decline.
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Harpcat Sep 2020
Right on!!! Get a different doctor! She doesn’t know what she is talking about.
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Her doctor will need to physically examine her face to face before writing an order for placement. The doctor will perhaps read any letter you send to him regarding your concerns but I have never seen an order written with no physical/mental assessment. Doesn’t matter what your niece sends him. The PCP needs to write orders specific to your mother’s mental and physical needs. She will take all this into consideration. It’s important mom sees her.

Also how will the SNF be paid for? Is mom on Medicaid? Medicare doesn’t pay for long term care. That will need to be established before she is admitted to a NH.

I don’t feel you should be doing this behind her back. Is mom mentally competent? I would begin to introduce the idea to mom gradually because either way, placing mom is going to cause her a lot of stress. She will need to deal with that. Keep your goal in mind - to get her out of your home to a SNF that will provide her with a team to manage her care. She will need to cooperate and attend a PCP appointment.

Hang in there. It’s a struggle but you can do it. It’s time for you to live your life as you’ve given enough.
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disgustedtoo Sep 2020
Given that OP said Dx has been done (LBD, Parkinson's, THREE strokes) AND has at least one specialist (neurologist), it isn't like this doc would be attempting to sign orders blindly. I would have SERIOUS issues with a doc like this. Mom's PCP when she was still living in her condo chatted with me (I was in the room with mom, while a tech was attempting to do what she needed to do and mom got REALLY pissy, so I left the room in disgust.) He had not seen her as yet THAT day, but mom had regular appts with him. He told me that he would send the necessary letter I needed to become rep for her federal pension (federal entities do NOT honor ANY kind of POA.) NINE months and many calls/portal postings later, nothing. Always asked for POA (they had a copy from the day of appt), what letter was needed for and what to include (sent a copy of what was needed BEFORE the appt, and attached to their portal request, so they had TWO copies of everything!) I gave up on them and since we were at that point planning a move to MC, changed to a local doctor (move was too far away to keep the other anyway.)

Another consideration is how state law might affect MPOAs. Regardless, I don't see how this doc, knowing mom's condition, would put up such a wall to prevent even talking with someone, esp if they are willing to private pay!
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You have a permanent back injury? Did you get this from taking care of your mother? How long has she lived with you? And how did she come to live with you (instead of one of your siblings)?

In my experience, doctors don't give a darn about the elder's living situation, especially when it's a family member (usually a daughter) who is bringing them to all of the visits. Their patient is the elder. And you've been carting her around to medical visits 2 - 3x/week?

Caregivers need to start being much more forceful about their own health, and to tell their own doctors how caregiving is ruining their mental and physical health. If there had been the serious suggestion/plea from anyone (including my 3 out of state brothers) that our mother needed to move in with me (the local one), I would have consulted with my own doctor and then told my brothers clearly and forcefully that my doctor said absolutely not.

Why on earth do you berate yourself because you want placement for her? I don't understand this guilt that so many have. Do your siblings have any guilt? Shouldn't THEY have guilt, also, if you do? Why don't they have MORE guilt? Over and over again on this site I read of 24/7/365 caregivers feeling so horrible that they can't be slaves any longer. And usually there are siblings who have never done any of it.

Please realize that I am not referring just to you -- I see this over and over again on this site.

Please do what the wise posters on this site have advised. Also realize and expect that once in the facility, your mother will probably get very ugly towards you.
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My mom has Lewy Body..I am her POA....the only way I could get her into a Memory care assisted living was to take her to the hospital when she had her 15th UTI in 15 months....she was so confused and could barely walk...finally The ER md agreed with me...she needs LTC. ...they witnessed her inabilities and I refused to take her home. They kept her at the hospital for 4 days then agreed she needed ltc after they took care of her... That opened the doors for an admission. Emotionally it was overwhelming but mom has improved since her admission. BEST DECISION FOR MOM...ROUGH ON ME!!
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I would get another Dr or you can try to get Hospice to come look at her and tell them you want to get her into a facility. That might work. The dr might not agree with nursing home care.
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disgustedtoo Sep 2020
Generally the doctor must also request hospice. If this doc is being such a PITA about granting something for a woman that she KNOWS has all these issues, not likely you'll get anywhere with that.

Unfortunately changing docs would require the doc see and examine the woman and see all the tests/records.
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what exactly do you want the doctor to do. You don’t need an order to place her. The facility will have their own doctors who can order the meds. If she has specialists, like neurologist. That probably isn’t available, just PCP. Depending on POA. You may not be able to place her against her will. If she is declared not competent to make decisions. Then you could place her but that will require an evaluation and a doctor to sign off. So if that is what you want her pcp to do, does not sound like doctor is willing. If you take your mother to him for a visit, he likely will bring it up. Perhaps at prior visits, she signed the form giving them permission to talk to you. If not. Either bring her for a first and ask her to sign, or get a form from them and ask her to sign it. At least with that form. Doctor will discuss case with you. But that still does not solve the problem of getting her to agree. Doctor or no doctor, you are going to have to talk to her. And if she refuses to go willingly, and has not been declared incompetent, you cannot make her. So the alternative will be, as already said. To call paramedics when she falls and have her transported to hospital. If she is admitted, then you have to say you cannot provide care anymore and refused to bring her home. Not sure if they will admit her to the facility you want her to go to. And you and your sibs will have to be prepared for pressure from hospital and for your mother to be extremely upset.

i think you will have to sit her down, explain that her care is too much for you and tell her you have found a lovely facility for her where your niece works. Perhaps you can present it that you need a rest and move is to be temporary. Yes that is a lie but a small one to keep her from imploding. You can then take her to doctor, be present for discussion. Get her to sign HIPAA form so they will talk to you and arrange for a copy of her medical records.
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Mrsrubee Sep 2020
I do not get the impression that she wants to just spring this on her mother at the last moment. Rather, she wants to have the pre-planning done before she broaches the subject. I totally get that approach and it's what I intend to do when it's time to place my husband. I will have 2-3 places pre-selected that are ready to take him within a week or two and THEN talk to my husband about it and take him to see those places and pick one.
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Is the doc gerontologist?

Have you tried to speak with the neurologist?

Is the POA standing or springing needing agreement by two docs of incapacity?
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She, the doctor will probably loose a patient ..so there may be financial reasons the doctor is resisting. (that is the gut response of the realist that lives in a quarter of my brain)
You do not need a doctors order to place her in Assisted Living or Memory Care.
You can fill out a Medical Release Form and they HAVE to send the information requested to the facility or to the doctor that requested the information.
She will probably have to get a TB test either skin test, blood test or X-Ray prior to being accepted as a resident but the facility can give you the forms and you can go to any lab and have them done, you do not need your doctor to order them or do them.

The next thing I would do in any case is change doctors.

Just be aware that a move will set off a decline and that is to be expected. How much of a decline is difficult to say. The fact that you have family member that works there might help but I am not sure how much contact she would have with your mom. But it is another set of eyes that will be there for her.
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disgustedtoo Sep 2020
"She, the doctor will probably loose a patient ..."

Not all facilities have their own medical staff (mom's does NOT), so that may not be true, but if my mother's doc was being that stupid, she would STILL lose the patient!

We had to change docs because NINE months after telling me I would get the letter needed for being mom's rep on a federal pension (not for lack of trying and sending what they wanted before and after, so they have multiple copies of what was needed), I had nothing in hand. We also would have had to change docs because the facility (MC) we chose was too far away to continue with that office.

After butting heads several times with this new doc (initially all was good!), I had to make a change as she wasn't listening to me and/or denying what mom needed or ordering massive amts of ibuprofen and tylenol instead of getting tests done to figure out where the pain in her leg was. I already had appt set up with new doc, but received a letter from that doc we were ditching announcing her retirement, which came just DAYS before she retired! NO WARNING (and she really wasn't all that old.)
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Get another doctor. I fired doctors before..no big deal. As for hospice, not all of them have a hospice nursing home. You do most of the care still.
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Find another doctor. Seriously.
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I thought guardianship was the stage after POA but my lawyer says that a properly executed POA will be as good as guardianship. She said that my sister would have to have a court appointed evaluation for guardianship to be granted, Then she said that there would be yearly evaluations to keep the guardianship in place. She recommended that I just stick with the POA. I am not sure if there is a POA for things other than medical. I also did a living will for my sister with witnesses and a notary. I live in Arkansas which might have different laws.
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elaineSC Sep 2020
POA worked fine for us in dealing with my mother. Doctors and hospital and even nursing home honored it. It was like relief for them because she was in bad shape and they knew somebody had to be in charge and all family members agreed so they had no problem with just POA. Mom’s dementia spoke for itself too. They needed me! They knew it. I had no problem getting her in once she had another hospital stay and was yelling all night.
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I agree with the others, who have posted to find a new doctor. I cannot understand why the doc would refuse. It seems that doctor's resistance could be interfering with your mom's continuity of care, not a good thing.

I have medical POA for my mom and once in awhile have received push back or just no response from staff where she resides. For example, I had some time ago requested copies of medical documents so as to update my mom's medical information that I and sibs have available if needed, and then having no response from medical records staff, even after submitting a properly completed request for release of information and that they already have a copy of the legal document for medical POA.

Anyway, keep on with doing what's best for your mom, know your authority, and keep a copy of the legal document (medical POA) on hand and ready to produce.

Hope that helps. I am so sorry for what your mom is experiencing; it is good she has you and others advocating for her. Take care!
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Get your niece in social services to advise you. This is her job and I am sure she does a good job. If you need to involve other family members, let her be in charge of the meeting.
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She needs another doctor. You are talking "Her best interest."

Sometimes, all a "guardian" is … just something on a paper. They are not always for "someone's best interest."
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I knew, for my husband, that I couldn't talk one on one with his MD because of HIPPA. I had him sign a HIPPA agreement several years ago that is in his file, so I could discuss his care with the doc without his presence.
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My Mom is now deceased (2018). My sister and I went through this with my mother. She had so much wrong with her but her dementia was making everything worse than ever. The doctor knew but the rules were that since most nursing homes have a waiting list, we had to wait until the next emergency room trip. She was kept in the hospital for the 3 days required before sending to “rehab”. When the doctor and staff saw how bad off she was, they all agreed she should stay in that facility. Each doctor is different. Some will work with the family if they see that it is wearing the family out and some just go by the book or are indifferent to the situation. Mom had different doctors...some specialists, etc. They all saw her mental state and the toll it was taking on the family. Her family doctor helped us. Does your Mom exhibit behaviors in front of that doctor? Mine did so he saw her in action and she had become bedridden too. Dad had bought a used handicapped van to lift the wheelchair into the van and we had a hospital bed in her living room so she was not left out of conversations and Dad could keep an eye on her and still watch tv or read so we gave it our all and that family doctor knew it. You will hit on the right doctor but it will take a hospital visit and admission and then a case worker at the hospital to get her to that facility. Good luck. I understand.
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I agree another doctor is needed. If a doctor is going to get so wrapped up in legality that it delays care, no one’s being helped here. And if your mom is getting upset or emotional or embarrassed if she knows you’re talking about her, I know that is painful, but she’ll manage. We have to advocate and argue a little bit for our elders at times, and sometimes they dont like it but again we’re talking best interest here. Good luck.
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Officially, Power of Attorney for Health Care only goes into effect when the patient is unable to make decisions for themselves by the doctor(s) depending on how it was written. If she hasn't been found to be unable to make decisions for herself, it isn't in effect. It might be too late for HIPPA (health information privacy) approval, if she is significantly confused, which would have allowed the doctor to talk to you.

My guess is you will either have to have your mother get admitted to the hospital for 3 days prior to placement, likely through the ER. This will be distressing to all involved, but might be the only option.

Or take her to the doctor so he/she can do their own assessment about her ability to make decisions for herself. If they find that she cannot, they might be more willing to work with you.
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Get rid of this doctor at once....something is very wrong here. Also contact your local Office on Aging. This should not be happening. Also, you must seek advice from a geriatric attorney. With her conditions, she should be in a nursing home. Get the facility involved, the professionals, everyone - this is time urgent and must be tended to now - but seek out another doctor at once.
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Lockett2166 Sep 2020
And be sure you have a COMPLETE POWER OF ATTORNEY which allows you to do l00% - not just medical care. That is where the problem might lie. Don't wait - get this done - now.
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Ask your niece if admissions for skilled nursing part of the facility can do an admissions / get her a bed from a “needs assessment” or if it must be a written MD orders.

If it’s ok from just a needs assessment, usually those are Geriatric RN & SW duo who do a detailed evaluation & score on mom in her home. Some facilities have an in house team that does these. When I moved my mom from NH#1 to eons better NH#2, they sent out a team to visit with mom all bedside. The RN called me as they were there to say all ok as the new place could do the level of care mom needed and then turned the phone over to my mom to chat a bit with me. Pretty awesome. We didn’t pay for their assessment visit, it was done as a part of the admissions transfer process. I imagine it was billed to Medicare or Medicaid in some way.

If your mom tends to “show dog” around strangers, let the assessment team know this in advance. They might bring something new with them to see how mom handles it..... like a notebook with an elastic closure or vitamin jar (she has to open these) or hold a coffee cup that she’s not used to. Y’all have to stay out of the room / house when the assessment is done too.

Now if it’s that she must have MD orders for skilled nursing care, I’d forget dealing with her old MD. Other than her office sending over your moms old medical records to the new NH, I’d find a new MD.
The place where your niece works at, I bet they have a MD who is the part time medical director. And I bet they also still have a private practice. So mom becomes a patient of this MD. Hopefully moms health insurance and whatever ones the new one takes dovetail! He writes the orders for skilled nursing care needed. The plus in going this route as he’s affiliated with a NH, he knows what type of ICD codes need to be in moms chart to define just how she’s needing skilled care in a facility. This will be mucho importante should she need Medicaid later on.

Please Keep in mind that the vast majority- like 70+% - of NH admissions come from a post hospitalization event and they get discharged from the hospital to the NH for rehab. They are a rehab patient at the NH. All this is a covered MediCARE benefit. And they have a fat health care chart filled with ICD codes that show skilled rehab care needed. Most of the articles and experiences are hospital 2 rehab 2 staying & becoming a long term care resident in a NH.

But your mom is still living at home with you. There’s not a fat hospital chart for her. Plus she has a beyond unhelpful MD. She’s coming in directly from home 2 as a LTC resident (not a rehab patient).
If she’s private pay definitely forever for her stay, no worries. But if she’s going to need LTC Medicaid in the near future, you do need to be sensitive to her chart documenting absolute need for skilled nursing care. I moved my mom from IL to a NH totally bypassing the AL phase. It took abt 5 months of MD visits every 2-4 weeks to build up her chart. Unfortunately if they are in IL or living at home there flat is not a fat health chart with notes and frequent lab work that gets stuff enter into often to document need. I had no idea just how beyond unusual it was to do this (IL 2 NH) and do it in relatively quick period of time.

Best of luck!
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Assuming she has more than one doctor (specialists, maybe) that have treated her, try another one of them. They should have access to the same medical records - most hospitals have everything online that doctors can access. Don't complain about the other doctor or bring up his name.
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When my dad became ill, he wanted me to discuss his medical history with his internist (also my internist.) The clinic that he attended had us complete a HIPAA authorization to disclose medical history and Dad included all 5 kids of his. Dad also had a completed Health Care Power of Attorney naming me and a brother in succession. So we never ran into any roadblocks.

Dad's internist never hesitated to discuss realistically what was going on. Via office visits or message center for the clinic. Dad decided, after two of his kids spent about 6 months taking care of him in home, that he and mom should go to Assisted Living. By then, he was also on Medicare hospice status due to multiple hospitalizations for his heart condition. So in AL, he was seen by AL staff and hospice staff. Mom, who has dementia and no short term memory ability, lived there with him without any services until he passed away. After that, mom was immediately moved to the memory care wing since she was unable to manage any of the ADLs without lots of help and prompting (prior to his death, Dad did the prompting.) The PCP was not involved in the placements at all, unless the staff at AL contacted him for some context or to renew an Rx.

Don't understand why her PCP is being so obtuse. If she is at Medicare hospice status (sounds like it,) once the MD certifies her for hospice services (all paid,) either in home or in a facility. The hospice staff takes care of getting her medications and coordinating her care.
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I read some of the answers which seem very good.  when your mother falls, does she end up at the hospital?  Maybe (not saying to let it happen) IF she falls again, just call 911 and tell them that your mother fell and you can't get her up.  they will take to hospital, do tests, etc.  in the meantime maybe you can speak with the ER doctor about all the other issues and they can assess your mother then to see if she needs 24/7 care (which YOU CANNOT handle anymore- let them know that). You didn't say what your age is but I am guessing it is getting harder to handle her physically.  They might ask which NH you want her to go to and they will see if any beds available.  This is what happened to my father, he fell (after several times), my mother could not get him up, my daughter called 911, he went to ER. When I got there I explained that my mother could no longer care for him and he could NOT go home.  The Dr. did an eval and indicated he did indeed need 24/7 care and asked where we wanted him placed.  they made arrangements and 2 days later he was admitted to the NH.  I would check with another doctor that she sees and/or get a physiologist to evaluate her and see what their recommendations are.  Wishing you luck.
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Now adays you can not trust all doctors. Maybe get second opinion by a geriatric physician that has good patient ratings and doctor doctor out on line. The whole purpose of Patien Advocate/POA for health care is to make medical decisions only if the person can not participate in those decision. Call attorney by referral from a friend that deals in malpractice they should know what doctors should not do. What is in the best interest is most important and legal contract should be followed seems to me if document was signed when competent and witnessed by notary. Family members that truly care and love need to know how to best help and that can not happen without knowing what medications, because each one has who knows how many side effects for each one etc.
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Imho, your mother needs a physician who works with your mother's now impaired needs. If if it that difficult to get answers and assistance from a physician, it may be time to get a new one. Wow.
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TomUs225 Sep 2020
My thoughts exactly!
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