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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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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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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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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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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, 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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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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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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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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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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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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