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 -
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.
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.
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.
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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