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.
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?
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.
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.
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.
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.
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.
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.
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!
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.
Unfortunately changing docs would require the doc see and examine the woman and see all the tests/records.
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.
Have you tried to speak with the neurologist?
Is the POA standing or springing needing agreement by two docs of incapacity?
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.
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.)
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!
Sometimes, all a "guardian" is … just something on a paper. They are not always for "someone's best interest."
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.
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!
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.