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Early last summer mom had to get a new PCP. The previous dr moved out of state so my mom just took the dr her plan assigned. Mom saw him once or twice over the summer re hip pain but nothing additional was done/changed - mom was allowed six Vicodin a day but she usually got by with three. I was not involved in these visits - she went with her in-home care provider. I followed up by talking with the caregiver and mom and by reading the after visit summary. Neither mom or the caregiver were impressed by the new dr but we decided to give him time to get familiar with mom and her health woes. Fast forward to September - mom is moved into AL after spending three weeks in rehab which followed about four days in the hospital due to a fall. Moms PCP was copied on everything but was not involved. After ten days in AL mom fell, went to emergency but was sent home after X-rays same day. Two days later mom fell again - no injuries. AL said we had to move her out but gave us time to look providing we had a private caregiver with her doing wake hours - which we did. About a month later during a visit in the afternoon I noticed mom was in an unusual amount of pain - which she shouldn't have been based on what I knew her pain med schedule to be. I went to the med room to see what could be done and found out moms dr had adjusted her pain med to one at 8am and one at 5pm with Advil in between. Turns out AL had contacted her dr and asked for a reduction in Vicodin to reduce fall risk - mind you, we had a caregiver with mom at all times. The dr agreed to the request. No one asked my mom, me, my brother etc - the dr hadn't seen mom in about four months. I was furious with the AL and dr. Since we were leaving the AL in about three weeks I let it go on their behalf but I called the dr the next day. Through drs advice nurse I got her pain meds back to how they were. I also got a second hand apology from the dr saying it must have been a communication problem. Two weeks later I went with mom to see this dr to get a ortho referral, Ativan for her upcoming move and we agreed on a better pain schedule. Since moms dementia often inhibited her ability to communicate effectively and to stay ahead of the pain rather than chase it we agreed on 8am/1pm/6pm. First week in new NH mom had one non injury fall. At the end of this week I spoke to his advice nurse to get a refill on the ativan since she was still having twice daily meltdowns. The dr grudgingly agreed but had the nurse call me back with cautions. Week two no falls but the NH asked me to get another ativan refill. I made a phone appt and talked to dr. He would not commit saying he wanted to talk to the NH which I said was fine. He said he or his nurse would call me back by the next day. No one called but I inquired at the NH and was informed an rx for haldol and Ativan was waiting to be picked up. I was annoyed but thought "whatever" at least the immediate problem was fixed. The following week mom began to fall - a lot - all non injury. Later mom admitted to me that for at least some of the falls she was laying down on the floor on purpose to get me to move her into my home. The NH put a fall plan into place which was pretty restrictive but she hasn't fallen since - we are about 10 days into the plan. So - yesterday I visit and mom is in a lot of pain, crying in fact. I look at the clock - she should have had a Vicodin 90 minutes earlier so off to the med room I went. The dr had about a week earlier changed her pain meds to one at 6am and one at 6pm. She could ask for one at bedtime - she goes to bed by at least 8pm so that made zero sense. Again - no call from the dr to me, mom or brother. I have a call into him which he hasn't returned. When I spoke to him during our phone appt I made it clear that I was medical POA and clearly my mom has someone in her life looking out for her. Can he made these medical decisions for her? I get he is working to reduce the fall risk but I'm pissed off out of my mind that he would make these decisions without even attempting to discuss it with me - again! I forgot to mention the cause of her pain - she has arthritis in her hip - literally bone on bone, you can hear it clicking when she moves. We do have an ortho consult in three weeks but what to do in the mean time - plus they will refer us back to her PCP for pain meds regardless of what happens at the consult. Sorry for the lengthy post -

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One more thing. Facilities usually have a conference concerning your Moms care. This is a good place to air any concerns.
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I didn't read all the responses but here is my 2 cents :-)

I think you need to talk to the nursing home adminitrator. For some reason the nurse on duty is making these decisions and should be calling you about any changes being made. WhenMom was in rehab I was called for every little thing. If your Mom is permanently in a NH check out their doctor associated with them. I wouldn't blame the doctor, he is only going by what the nurse tells him. Once I talked to the administrator or had nurse than maybe make an appt with her PCP to discuss ur Mom. One thing I'm surprised is they allow u to pick up her medication. Here in NJ and Del they don't allow it. Residents must use the facilities pharmacy. Also, if u haven't, make sure the doctor and the facility has your Medical POA on file.
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Excellent and I hope things continue to improve. Sounds like the team is in place.
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Rainmom, I don't think you should see your mom gaining a specialized medical team as the doctor's finding her a difficult patient in the sense Ferris meant-- someone with an advocate who speaks up. I think you are blessed that the nurse got your mom into a program that deals with complex patients--those will multiple medical and mental health issues. And having one person on the team who coordinates and who you can call? I think you've just gotten the golden ticket!
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RainMom, glad things seem to be progressing and a better plan seems to be imminent.

Some doctors just don't know how to interact with patients; I've met a few who don't and have no trouble moving on. They are supposed to be experts in their field, but that doesn't always mean that interpersonal relations are at the expert level as well.

I don't think your concern and perseverance was unreasonable, and in fact applaud you for it.
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Hey Everyone - thanks for all the input. Two days ago I was able to talk to the drs advice nurse. She said there was a lot of documented contact between the facility and the dr. - she'd call the facility to check their understanding of his orders and go from there and she would call me back. She also hinted at the time of "an idea" but wasn't sure my mom would qualify. She called yesterday. Seems the doc had sent so many orders changing his mind back and forth and included so many "if this, then that - but when..." that things became contradictory and confusing. She had the facility scrap everything and had the doc write new orders - the pain meds were addressed in a way that everyone agreed upon. The doc also gave a referral for a Geriatric Psy and a low hospital bed -yeah! She told me another nurse would call later. A nurse called saying my mom qualified for a program where her health would be managed by a team. 3 nurses, a dr, a social worker, a pharmacist and some type of geriatric advocate. I was given a special phone number and directed to call them from now on. She said this team was for patients that had multiple issues and when special attention was needed for coordination. I don't know - maybe Ferris is right - maybe this team is for "difficult" patients and their families. Regardless, I feel better about my moms medical care. The thing is - I can fairly say I've probably dealt with doctors more than the average person - doctors for my dad, a PCP, cardiologist and a urologist - my son having severe autism, mild Cerebrala Palsy, six weeks in the hospital and two emergency surgeries for perforated intestine, dermatologists, a dr for his scoliosis and his PCP, my moms PCP, gyn and ortho doc, my PCP, my three back surgeries and a pending hysterectomy, my dermatologist, hubby's PCP and cardiologist - I'm sure I'm missing a few.. I do not consider myself an expert by any mean and participate as a student but also as an advocate of reasonable intelligence. I have never run across a doctor like this guy. All I had hoped for in my moms case was a phone call "Rain, your mom is falling a lot. I think we need to adjust her meds. I recommend..." It would have been a ten minute conversation at most. If he didn't have time for a call his nurse could have passed along the message and/or I would have been happy to make another phone appointment. But I guess "all's well that ends well", right?
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My concern is with Dr. AND facility. I get called for every little thing imaginable. I can't believe that they would discuss something with someone that has even the slightest hint of dementia. That's deplorable. I myself would find a new doctor, social worker, caregiver and facility immediately. Caregiver should have called during the appts to let you know what was going on. Just sounds like everyone fell down on their jobs. I'm lucky (kind of) that I go on every drs. appt. with my dad. Yes, it's a pain sometimes because there are many but at least I hear first hand what is said instead of getting HIS version. He doesn't have dementia but is 93 and doesn't remember things quite the same as what has been said to him. My mom DOES have dementia and even when she was still living at home and functioning fairly well, I wouldn't have trusted her version of anything. My dad (10 years ago) or myself would go with her to dr. which she absolutely hated us for but so be it. Please try to find a geriatric doctor to work with. I believe you said that she is in a facility now?? They should have a dr on call and the nurses should call you with ANYthing that happens even if she stubbs her toe or chips a nail. If they don't it's just not a good facility. If she has a caregiver, that person should also contact you with any and all concerns, information or questions. Whew, I could go on and on. Just been through this with 4 people in my family so have pretty good knowledge of what not to put up with. Good luck and God Bless
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Unless you have a medical degree or some medical education, the doctor is going to continue treating your mother in his medical model. You can fire him and get another, but as a medical professional I can tell you with a patient with a terminal illness, family members can get angry and frustrated as much as they want, but it will not change the diagnosis. Giving Haldol which is an anti-psychotic plus Vicodin will further increase falls due to the dizziness side-effect both drugs have. Pain is subjective and I suspect your mother is also playing you in order to get attention so you let her live with you. Clicking of bones is simply gases being released when bones rub against each other, and arthritis is an autoimmune disease no one has found a cure for yet. Again, with a terminal illness no doctor is going to get too aggressive with any treatment. My suggestion would be to ease off on the pain meds because there will be a "rebound" effect when staying on pain meds. It also produces OIC (opioid induced constipation) which will produce pain when one cannot poop. I know you are doing the best you can for your mother, but either let the professionals take care of her, or bring her home to your house and you care for her. Getting yourself upset will do no one any good and you will be targeted as "difficult" by doctor and staff. I have fired more doctors for my husband, but I know his diagnosis will not change. He is on no medication and he is starting to get shaky while walking (due to brain malfunctions) so I just try to be his support. I know what to expect about the events coming...Merry Christmas and my best to your family.
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I read your post twice. Having dealt with my mother's falling, and she was using a walker all the time, I began asking questions, such as, does Mom remember to use walker, is she believing she can still stand and walk without fear of falling, etc.. Then I had to talk with the caregivers, does she ask for help, does she just get up and go. It became very obvious to me that she needed to have help. We (the family) talked with Mom and got her into a wheelchair. Please note, Mother also has a arthritic hip (bone on bone) as well as the same in one knee. There was resistance, at first, to the idea of being in a wheel chair, but now she has learned to get around and seems much happier. Her PCP is very good, but not when the problems are so specific. The PCP suggested Specialists help in her care. In this process I also had her examined by a Neurology, for dementia status and bone and Joint specialist for her knee. I also found out that the falls were in part the result of very minor strokes. The difficult part for those of us with medical POA is being aware of all the issues that must be considered. I have learned that doctors do not always look at a much broader picture than what symptoms are present. Remembering also that Mom was no longer telling her PCP all of what she was experiencing (did not remember a fall or complaint) when she was seen at this office for a check up. As for the Dr. not responding -- I interviewed the doctors and found one that really wants to treat our seniors.
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Wow, Rainmom. I have no idea if this falls within the bounds of UCR, as Sandwich says. There is a very fuzzy area when the patient is not incompetent and you are simply her proxy, not her guardian. I would understand this from the Medical Director of the NH, but not an outside doctor. I would certainly interview some new geriatricians, and find one with better communication skills.

That being said, the doctor needs to rely heavily on the medical staff at the NH to report on what your mom's reactions to meds are, and what her behavior is like. Frankky, our parents behave very differently with us during visits than they do during the rest of the day/night. I think you want to make sure that the SW, DON and nurses know that you want to be informed of any med changes.
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Lol - won't change
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Can call
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And, the HIPPA laws. As a wife, I cannot even get an answer from the doctor's receptionist if my husband made it on time to his appointment. (Needed to know- he ghosts, could have been waiting invisibly in the waiting room).

However, a social worker an call the doctor and obtain a doctor's certificate
WITHOUT A SIGNED HIPPA RELEASE!!!! Don't worry, I am on it!
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Rainmom, the details you are describing could have been written by anyone and has become the standard for practice of medicine: UCR, meaning the treatment is usual, customary, and reasonable.

With regards to the pain meds, the doctor is under pressure by the insurance company, and other agencies of the government to prescribe according to their rules, driven by finances, and drug enforcement.
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Hey Babalou - the doctor is not affiliated with where she is living - now or when she was in AL. The first time he did this it was at the request of the AL. When I contacted him he apologized through his nurse calling it "miscommunication". This second time he made the change after he had prescribed her haldol and extended an ativan rx. When I talked to his nurse today she verified that all his communication had been to the NH. And there was the in between incident when I requested the ativan extension during a phone appt between he and I. Then he wanted to talk to the home before he made a decision and said he would call me back by the following day - which was two weeks ago - no call. In writing all this out in these posts it occurs to me that he seems to prefer dealing with other "professionals" than with a legal proxy for his patient. Since l will more than likely remain in this position and more than likely he will change his communication style/method, I probably need to find my mom a new PCP. I guess my only other decision is to determine whether or not to file a complaint. Is what he did out of the norm when dealing with a medical POA and factoring in her NH setting?
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So, my answer to Rainmom's question: "Can the doctor legally do this?.
Yes, especially if he has a good lawyer.

That really is NOT a joke. Think about it.
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Has anyone noticed the power the doctor has in every person's life? Now holding that power is the insurance company. Can anyone get though life without the doctor? Permission to exist after birth: The birth Certificate signed by, the doctor. Proof that you have died, The death certificate, signed by, the doctor. And everything else in between. Permission off work/school. Physical permission to go to school. Now signing permission to end a life, the doctor.

It is this way, and has been for quite some time. Lulled into a false sense of security, we still go to the doctor for help. At the same time, I have worked for some very good doctors, and respect them.
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Rainmom, how sure are you of that? If the doctor says s/he didn't discuss it with her, you should report it. But if your mom, the dementia patient says that, well, it's not so clear. It probably also depends upon what state you're in, and the like.

If this is the Medical director or on site doctor, I'd talk to her/him and find out what the best route of ongoing communication is. " would you prefer to call or email me when you've visited my mom and there are results or changes to discuss?"

If this is a private doc, fire her/him.
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The thing is Babalou, this guy didn't even discuss it with mom.
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I tend to agree with Magicstone, that this guy is an a**. Or maybe I'm just spoiled by my own PCP. My dr tends to present me with choices and options - and in my opinion unless someone is in a coma or the like or utterly alone a doctor should not be making decisions on their behalf. Especially in this case when the guy barely knows my mother and what her feelings are regarding quality of life and what lengths she is prepared to go or not go to to achieve that level of quality. Granted moms dementia has impacted her ability to know/remember what those feeling are - but that's what I am for and why she made me her medical proxy. To me it is insulting and the height of arrogance for him to unilaterally make a decision that impacts another persons quality of life without considering that persons feelings and preference.
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The thing I've found, over and over, with my mom in the nursing home, is that Medical POA means they CAN discuss it with you. Not that they MUST. I've found that the doctors and other providers discuss all of this stuff with my mom ( who has dementia and aphasia), but hey, they've discussed it with the patient and the patient agreed.

I seem to have worked it out with the Social Worker, Mom's regular day to day RN and the RN on the unit, that if anyone is going to change anything, someone calls me. I want to emphasize, this took months of trust building, meetings, me stamping my feet, bringing cookies, etc. It took time. But eventually, they GOT that I wanted to be called.

If your mom hasn't been declared incompetent, the doctor is completely within guidelines to inform the patient, who in turn is supposed to inform you. I know, it's like telling you that your preschool child is supposed to give you a reliable daily report about school. Deep breaths.
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OK flip side of the coin coming. When Mum went into hospital I told them quite clearly that if they saw to it that she had cauliflower every day her bowel movements would be ok. Then when they gave her massive doses of antibiotics I didn't ask I told them to stop the cauliflower. They didn't - she ended up isolated. After numerous tests and scan they discover she had diverticulitis AND IBS not a good combination but hey not life threatening either so all good there.

Meanwhile they did a full review of her meds and I was not consulted but I was informed of the outcome. They stopped all her medication and then put them back as the need arose (obviously not an option with regard to life preserving meds) When she went in she was on 13 tabs twice a day now she is on 7 once a day and 1 at night plus a total change in painkillers - her bowels are now mostly under control and we definitely don't veer from impaction to diarrhoea like we did before. So although they can be a pain the docs can also be a godsend. my concern rests with the nursing home - and why a doctor would take their word for anything without consulting with you as well
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I too went through an experience in which meds were changed during a hospital stay, I couldn't get an answer from the discharge nurse or from the charge nurse, so I took my father back to his cardiologist, who prescribed the regimen in the first place. He agreed that the meds shouldn't have been changed. He added that he would have appreciated the courtesy of a consult.

I thought about this a lot and realized that the particular doctor even though having met me during 2 previous hospitalizations, may not have remembered that I was very involved. I didn't want to hamper his ability to treat Dad, but I also wanted to understand why he changed the meds. Eventually the cardiologist changed them to what he felt was appropriate.

In relating that, I hope I'm sharing that I don't think all doctors are necessarily on board with patient's families being involved with med selection and changes. Some of them really resent it. Those kind get fired.

I do think you have legitimate reason to be concerned about the lack of communication and cooperation with this doctor. I also wondered about why an orthopedic doctor wasn't involved, although I see you have an appointment with one.

You mentioned that you think the ortho doctor would refer you back to the PCP for pain meds - NO! Tell them you don't have a PCP and if asked if Dr. X still isn't involved, just tell them no. I've done this with the ones with whom I've been dissatisfied, making it very clear these guys as past tense.

And find another doctor, a geriatric PCP perhaps, but someone in whom you have confidence. Unfortunately, it often is hard to find a really good doctor in whom you have confidence, and who works with the family. We've been lucky and unlucky.

If that PCP was my doctor, I would be dissatisfied with him too.
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Rainmom, this my not apply to your Mom, but my mom age 84 was misdiagnosed for about 5 years for pain and was on an enormous amount of oxycodone. She was like a drunk, slurring her words, falling, ER trips, broken bones. Finally got a good ortho guy involved, bone on bone bad hip. She had been in excruciating pain and just drugged up by her treating doc who's an idiot. Finally had hip replacement, rehab and then I srtruggled to get her off the oxy. Whole different ballgame now. She's more active, engaged and largely pain free. It was an ordeal and she still has a multitude of health problems but her quality of life has dramatically improved after the hip replacement and getting off the pain meds.
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Pain management is challenging. When my cousin was in regular AL, narcotic type meds were not common due to fall risks. My cousin had terrible balance issues and was already a fall risk. Even Ativan was problematic. We explored other options. Have she tried Cymbalta? It's prescribed for several things, including pain. It really helped my cousin when she fell and fractured her spine. She also has severe arthritis in her back. It worked wonders for her and she denies back pain anymore! I'd inquire about it. OH, it doesn't make you drowsy or dizzy either. Plus, treats anxiety and depression. I have no stake in this med. It's just worked so well for my cousin and brought her a lot of relief. I hate to see people suffer.
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Rainmom, one sentence jumped out at me "Later mom admitted to me that for at least some of the falls she was laying down on the floor on purpose to get me to move her into my home". Wonder if these other "pain" issues were actual pain or not.

Do you visit your Mom at the same time each day? Try visiting at other times and see how your Mom is doing. I remember some time ago a writer here said every time they had visited Mom she was saying she hates the nursing home, she says she stays in her room the whole time, etc.... then one time the writer visited Mom at a different time and found Mom in the recreation room with some of the other women residents and she was really enjoying herself. So you never know.
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Dr. sounds like an a**.. if the pain meds helped her with pain, that is what matters...I don't know if the Dr. has a right to just change her meds when he feels like it...I would ask for another DR.
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Well, there is an increased fall risk with narcotic meds, I'm sure that since your mom has had a fall that is foremost in the doctor's mind right now. Even 24 hour caregivers can't hold her hand every moment, so she may fall again, and the consequences of falls in the elderly can be catastrophic. And yet what is the point of preserving her life if that means she has to live in pain, not a good trade off in my opinion. Sometimes finding the right combination of meds is a lot of trial and error. Try to work with this doctor, rather than calling him out enlist him as an ally, ask his advice perhaps ask for a referral to a pain clinic. Good luck.
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