Mother has Lewy Body Dementia and Parkinson's. As Medical POA I want to talk to Mom's Dr. about long term care, but Dr. refuses. Advice?

IMO your mother's doctor is not providing service to your mother! Others say find a different doctor, but any new doc will require seeing/examining your mother. Since she has been to a neurologist, have you tried their office to get what you need? They would have a much better handle on her cognitive issues.

We have had POAs in place a long long time. Despite that, EC atty told us we couldn't force mom to move - she was adamant that she wouldn't move, esp not to AL and that she was fine, independent and could cook. She wasn't and couldn't. POAs allow you to step in for someone else, to sign documents, make financial and/or medical decisions according to the person's wishes. Unfortunately they are not enough to force a move, per our EC atty. He said we would need to get guardianship, but the place we chose wouldn't accept committals, so guardianship would be time consuming, expensive and useless to us!

We moved forward with plans anyway. Made deposit and arrangements for when the MC unit was up and running (rebuilt facility, MC was the last unit to open in IL/AL/MC.) I left it to my brothers to do the actual move (I did MOST of everything else, and wanted to keep the blame off me if possible!), but they really didn't have a plan. I made suggestions, but was ignored. Days before the planned move, she injured her leg and developed a serious infection. It delayed the move a few days, so YB used the time and incident to draft a phony letter from 'Elder Services' at the hospital, which stated she either moves to a place we choose, or they would place her. She was mad as all hell, but she went with them.

We had NO doctor Dx, NO doctor letter, nothing. Facility staff had seen her and knew her condition (YB kept insisting AL, but they said no, MC, so they could tell.) They said to just get her there, they would take it from there, which is what we did.

So, in your case, if you think she needs a NH (doesn't sound like she needs specialized nursing care yet), either push back harder with the doc, or try the neurologist. If MC would be enough, check with the place you have chosen. Do they really need doctor orders? If not, YOU sign everything as DPOA and find a way to get her there (going out to lunch, visiting someone, etc, any fib that would get her to go with you.

Another option is to get an outside assessment. When we tried hiring aides to keep mom in her condo longer, they sent a nurse who did a FULL test in mom's condo with YB and me present. Medicare covers the cost for this. She even came a few more times, due to UTI during this "transition" and her services were covered by Medicare. We did NOT use the results of this test to make the move.

Obviously it is hard on everyone to make this move. You feel guilty for "giving up." They might be angry for a while if you make them move. Honestly, I don't think ANYONE with dementia is going to ever agree that it's time to move. We have to make that decision and somehow make it happen. Sometimes everyone involved works as a team and it can go fairly smoothly. Other times you have docs like your mother's, who just don't get it!

BTW, mom's doc at the time promised a letter I needed to become rep for her federal pension. Federal entities do NOT accept POAs (SS, Medicare, VA, IRS, etc.) They all have their own forms and process. NINE months later, despite MANY phone calls and portal postings, giving them copies of what was needed and why, plus multiple POA copies, some before the appt, some after, I still had no letter. Office staff was the problem. The move was going to require a change in docs, so I made arrangements with the new doctor and eventually (took almost 2 years and 2 letters!) I was able to be approved! SS rep payee was a snap in comparison!

So, you aren't alone when it comes to doctors not being helpful or receptive. If you can, find a way around her.

You need a DPOA . Your mom needs to be found incompetent and diagnosed as AlZ . Medical POA doesn’t give you any rights to sell property, or handle financial affairs . When you she goes into a home SOMEONE has to sign for financial responsibility .

Thats probably why the doctor isn’t talking .. you don’t have POA .

Good Luck

Yeah, I agree with others...why do you need a dr's order to place her in a nursing home?  I thought they did their own evaluation and will ask for medical records from her physician for continuation of care.  I would find a facility and get the ball rolling for placement.  There is no doubt that your mom will be scared and agitated and maybe even angry if she has enough where-with-all to understand what is going on, but these facilities have the appropriate equipment and staff to take care of her and that is what you want ... and that is what she needs.

Some of these dr's are scared they are going to assist in putting someone away against their will and get sued.   It's ridiculous...if he knows your mothers medical condition, then he knows she can't be managed by someone at home.

There are some great facilities out there.  Do your due diligence and check several out and find the perfect fit for mom.

Take care.

First may be to find out your state laws and rules, I am just now hitting this sort of wall with my situation. In his case, there is no POA nor guardianship, and unless he is taken to court and legally found incompetent, they have to do what he says, even if he seems delusional or unrealistic. Patient freedom and autonomy supercede even common sense in some places.

I had POA for my Dad. He was living on his own in an apartment. He wasn’t taking care of himself, and was hospitalized several times in a few months. He would call a taxi and go home whether it was advised or not. Finally he was evaluated at the hospital and determined to no longer be able to care for himself. He was delusional, and has vascular dementia. It was that paper that enabled me to get him into a nursing home. But we had to get guardianship through the courts because Dad refused to stay and kept leaving the nursing home.

Your physician is your MIL’s doctor, not yours. POA gives you the ability to make decisions if they cannot. Maybe call the doctor’s office and ask for evaluations to get the documentation you need.

We did go to an elder care attorney to find out what we needed to do. It is different in every state. He helped us through the process. The bill was paid through my Dad’s account so we did not have to pay.
I don’t think anything prepared us for how difficult it is when the parent doesn’t understand what is happening. My Dad is still mad at us, but he is where he needs to be. None of us could handle him.

If you can got her in the SNF without a doctor's order, her PCP may become moot. There's usually a facility doctor who handles most patients there -- at least that's been the case in the two places my mother has been in. I've been very happy with the facility doctors, and really happy to get rid of her former PCP. (I'm sure she was happy to dump a patient, too.)

Why do you need a doctor's permission to find your mother a place in SNF? This is something to discuss with the facility. I have been through this with my mother, getting her into AL, then rehab and SNF. None of these require red a dr's order.

I am now I n the process of finding a Memory Care place for Mom and have talked to 6 facilities this week, none has mentioned needing a dr's order for placement. Each wants to do an assessment of Mom's metal and physical status to determine the best placement for her. They will talk to the current staff and/or doctor as needed, and interview Mom.

I suggest talking with the facility director to find out what they need to place your parent. Also your state's Department on Aging. That doctor sounds like a jerk!

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.

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.

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.

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.

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.

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!

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.

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.

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.

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.

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.

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."

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.

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!

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.

Find another doctor. Seriously.

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.

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.

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?

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.

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.

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!!

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.