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krnhersh Asked March 2011

How do I know if the proper test and medication are being given to my mom?

i cant seem to get a straight answer-no one seems to know how to deal with this without adding to her dementia and health problems.i am very frustrated and angry. i feel like i want to scream and yell at these doctors-her primary, here at home and the ones inMass. at the jewish geriatric nursing home-where she was taken2daysafter surgery to thatnursing home 4 hours away ,isolated,and no one there thatsheknows.i cant get a satisfactory answer to basic questions- and i find i dont get a real report of whats going on, when i finally do get to speak with someone from the staff. i get this rosy, phoney,oh shes doing fine-obviously incorrect answers-like i am some idiot or they are idiots- or they just want to get me off the phone.this has been driving me crazy- its gotten worse since my brotherwas given complete POA-and has been an a@#!!!!!!i havetried to accept the fact thatit iswhat it is- however last nite i found out that she has had thisfistula since shearrived,and has been subjected to being changed and wiped every 2 hours-which is sopainful since she is sore- i never knew this- i cant believe that nothing is being done-she screams and fight every time sheis changed, there has to be a better way- i dont think she is getting proper care-maybe nothing can be done-but atleast they can give her something forpain- and not haldol-which she is on 3 times a day- im just disgusted and dont knowwhat to do. if anyone has any ideas, or words of wisdom, please send them this way- i think i am ready to collapse!!!!

vstefans Mar 2011
I wish I fully understood the impulse to withhold information form families that so many health care providers seem to experience. They don't want to take the extra time, or have anyone question the adequacy of care I suppose, or to have to go to the trouble of changing meds or explaining anything difficult. I am a rehab doc and I promise we try to give families information and find they are starved for it, plus try to get information from them about meds and behaviors, goals and needs. And when we have good information going back and forth. lo and behold, we can provide better care and have greater satisfaction for all. But I've also had problems getting to talk to doctors, and one time I would have been denied a list of my mom's meds if I had not pulled out my medical POA and READ it to them. And yes, they did screw up and d/c'd a med she needed to continue, which explained a troublesome symptom. I would say persist, look up patient family reps associated with any hospital or practice, and use the nursing home ombudsman or its equivalent. You may even want to say you don't think the care is bad, but you just want to get more information, get questions answered, and see if there are any alterntives to caring for the fistulas less painfully or addressing what might be causing them. I would also say if you can't get POA, and brother is not sharing any information or using the POA as intended to help her, you may need to try to get guardianship to make sure you can continue to have a say at all, especially if you are planning to report actual negligence. POAs who are negligent can be removed and replaced. Maybe the brother would be willng to sign a permission for you to receive information about her medical care and condition, if he knows you are concerned enough to consider filing grievances.

I will say that both realistic and unrealistic fear of HIPAA - as well as the ability to use it for an excuse - has led to even more ridiculous withholding of information that does nothing but cause more harm.

beba53 Mar 2011
YES! My orchids are blooming and the sweet Jasmine smells thru the air. The butterflies are everywhere collecting the nectar,Yes its wonderful to be alive and healthy. Thank you Jesus!!!!!

What site did you use to find the records for the home. Please share it with me and others.
Blessings Virginia

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krnhersh Mar 2011
and thank you too bea53- i was respondong to both of the comments- thanks
this is so dificult
it helps to knwo we are notalone
we should all put some of our posts toger and write a book- that way those who havent found this wonderful site will find some comfort and some help -
r u gardening yet?
Karen

krnhersh Mar 2011
hi nancy-
good advise- i have chkd the place on line-lookedup records from state departments,etc
the last time they were inspected was 2005- and nothing after 2009- now we are 2011- so how accurate is this info?
and when i looked up how they did these inspections, how they were rated and how tthey rated he doctors, it was clear to me, it wasnt like they actually spoke to the doctors or checked out where they parcticed-it wasnt done with any great acuracy. as far as i could tell ,
it was very dissapointing to see how they rate these places-actually it is disgraceful!
they only will go back5 yrs ,asfar as complaints- maybe thats enough- but i didnt find it very satisifying even after looking up as much as i could.
i am usually quite outspoken and ask many questions. i alsways have-
but since this last incident- and her being taken up to mass. and me not having poa- it has kind of knocked the confidence out of me, because my gut has told me the truth all along,about many things ,especially in dealing with moms situation.
and now, i am questioning everything-including myself - thats not good- not for me-

but i have to keep pushing- i cant accept not knowing whats up, and being exculded just makes me over emotional and suspicious and diffiuclt- especially to me-
thank you for your post-
it helps ..
i love this site!!!!!!!!!!!!!
have a good one- weather is nice-

beba53 Mar 2011
I think I am able to somewhat give you some insight here. My mother is a VERY strong willed,controlling person. She likes very few people,or put they like her,becasue she she becomes verbally abusive and threating. So much that she calls the police on her the ladies that have lived with .When I could take not more day i called her clinic and gave them a piece of my mind. She was at once seen by 2 physcartists who place her on medication to some what sedate her and take the agressiveness away. The fistula in alot of cases takes a small operation to remove,my sister in law had it also. As for your concern about proper care,call the NH agency who regulates these homes and share your concerns. They will jump on it because they fear you could sue for neligence if something happened to your dear mom. (sorry for the spelling)
I am an assertive woman and wont take no for an answer,so much so that they call me for any updates . They respect my knowledge NOW! Step up to the plate and show them who is in charge,and if you dont agree...TELL THEM! They work for you not the other way around. Ask questions,put your foot down and most of all never throw the towel in. Blessings Virginia

NancyH Mar 2011
The first thing I would do if it were me in your shoes, my homework. I'd be checking into the nursing home's record or whatever and see if there's been other complaints. My mother-in-law has Kaiser insurance. When it came time to pick a nursing home for her to go for rehab for a broken hip, they had plenty to say about the nursing homes that I mentioned. Of course they had their own idea of where to send her, but when I questioned them about a few in our are that I knew of, I saw rolling of eyes, and himhawing around so I knew there was a problem with those and pressed it. Then I'd do my homework about her ailments in particular. When you're well informed as to what you're supposed to be asking specifically, it will become clear to you if something is amiss. Information is power when dealing with this kind of stuff. I'm convinced of that. Good luck to ya.

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