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Amikkwe Asked August 2020

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?

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.

AlvaDeer Sep 2020
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.
Harpcat Sep 2020
Right on!!! Get a different doctor! She doesn’t know what she is talking about.
Sadinroanokeva Sep 2020
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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igloo572 Sep 2020
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!

Llamalover47 Sep 2020
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.
TomUs225 Sep 2020
My thoughts exactly!
CTTN55 Sep 2020
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.

Grandma1954 Sep 2020
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.
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.)
AlcyoneSong Sep 2020
Find another doctor. Seriously.

BarbBrooklyn Sep 2020
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.

cetude Sep 2020
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.

Countrymouse Sep 2020
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.
shad250 Sep 2020
..and Doctor cut out of billing for seeing her,
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