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she has already been diagnosed with dementia and they are telling me she has to be totally incapacitated for me to take over. that she has to refuse even though she is not capable. is this correct?
Get a lawyer. You absolutely have right to refuse medicine. Help your parent find a place where the director believes this is an important right.
Then watch out for Home Health Care. If they want, they can call your dr. behind your back and even force your parent to move out of the place they live. My Mom has been combative only when having a fracture and on Tramedol. They want to give her Haldol (anti-psychotic for schizophrenics) and since I refused and director backed me up, they are trying to force me to move my Mom. Like we need this extra stress after everything else we are going through!
She had dexa scan and blood work today. She was wiped out from it. Its like her motor skills are not working. I cant wait for some answers. Also spent night at facility and got copy of her med list and they discontinued calcium on july 3rd on last page. But onfront page it had been marked that they had still be giving thru the 7th. I asked and they said "oh someone just marked it" and they have blod pressure readings marked every am but ive been there and they never do. They just mark that they do all these things...? Wtf
CountryMouse, I couldn't agree with you more. Mom lives with me. I know when she's putting on water weight from her legs and ankles and the way her strength wanes when her diuretics need adjustment. It's a finely-tuned balancing act. When she's balanced, she's a beautiful sight to behold. When she's not, she's at death's door. I've been darned good at keeping that balance...a tweak here, tweak there...but every darned time she goes into the hospital? The doctors IMMEDIATELY take her off what she's taking and put her on "something new". I imagine it's the drug they're most familiar with. But balance is essential. Hospital stays mean weeks of adjustment. If there's a next hospital stay, I am putting in writing that they are to tweak her current meds, not start all over re-inventing the wheel with the latest and greatest newbie.
judie, they actually know all about the warnings on antipsychotics in dementia, and just give it anyways if they think the risks are outweighed by the distress the patient appears to be having. NOT saying that's good - a little buspar or even a little benzodiazepine may be safer - but for our elder loved ones with dementia, there are not many things that aren't riskier to try if all the non-pharmacological ways to deal with agitation and anxiety aren't doing enough. They can give themselves heart attacks from the distress and agitation too, unfortunately.
My husband was just released from hospital. He has been taking Aricept for several years now, for Alzheimer's. They gave him a "Zyprexa" while he was there because the Steroids, Percocet, and Hykadin were making him act weird, yet they didn't see that. . . . And just decided he needed another medication for that. I couldn't believe the side effects he suffered, and still is! He was a MESS! I researched the pill up and FDA had black boxed the fact that elders with dementia, and several other medical issues (which he had most of) were NOT to be given this medication. I called, after doing the research and told ALL of the doctors that he should NEVER have been given this medication and apparently no one checked or they would have seen that it could cause immediate death, stroke, etc. Why didn't anyone check his charts before administering this medication. Besides, that med . . . it is given for Schizophrenia/Bipolar persons. . . Which he has neither!!!!
I doubt the doctor even ASKED your mom if she wanted "XYX Medicine." It was simply prescribed. So the defense that she's not impaired enough for you to take over doesn't hold water. If there's a particular medication you don't want your mom to take, put it in writing. Ask for a list of her meds weekly. If you have a problem with one of them, go to the managing nurse and ask that it be stopped. Or ask for a phone call from the doctor for more information.
If a doctor is treating your mom, it's unreasonable to expect that he will call you every time there is a medication change. The management of elderly disease processes is often a bit of trial and error. To tie your doctor's hands on ALL of her meds isn't necessarily good care.
If your mom has been diagnosed with mild dementia, the doctor (or staff or whoever is telling you this) is on thin ice telling you that you can't over-rule doctor's orders. However, if your decisions can be seen as arbitrary and capricious, or not in the best interests of the patient they're treating, you can expect blow-back.
They haven't been buggering about with her diuretics, have they? Oh dear, Lizzie. I've lost all faith in them and I'm not even you and she's not even my mother.
It bewilders me that some - and I'm pro-doctors on the whole, so I stress the "some" - doctors can be so hung-ho when it comes to altering prescriptions. I mean, this clinic is contracted to work with exclusively older patients: they must KNOW that, for the majority, this means patients whose regimen has been finely tweaked and adjusted over some years in pursuit of just the right balance. And then some callow wet-behind-the-ears bull-in-a-china-shop goes charging in waving a pharmaceutical company's marketing material, and it can take weeks to get them back to normal. If I were your mother's doctor I think I'd send them a stern one-line letter saying "DO NOT MEDDLE WITH MY PATIENT!!!"
The consent issue is a massive can of worms, though. So they're relying on your mother's competence and therefore her own consent to her treatment. So they should, theoretically, be able to demonstrate that the change(s) were explained to your mother, she understood the treatment plan, and she consented to it. Well. Wouldn't you love to have that conversation captured on cctv?
Then again, a doctor has to act in the best interests of his patient, consent or no. If consent is withheld he can protest, he can resign, but he shouldn't knowingly act in a way that could cause avoidable harm. So, they can treat without consent in certain circumstances. But to pretend that they're relying on the informed consent of a patient with dementia - that's got to be pretty thin ethical ice, surely.
So, if your DPOA was drawn up in one state and your mother is now living in another, is that also a potential weak link in the chain? Is there any suggestion that the NH can't rely on the validity of the POA?
Then again, there's the issue of how much of this current situation is the result of working practices that are simply quicker and easier - easier not to contact you or your mother's doctor, easier to follow guidelines without thinking them through, quicker not to worry the staff's collective head about how to get round a given problem? I understand exactly how you feel, but it is - as you already know - a pity that you raised your voice (I'd have struggled not to kick anyone, personally) - it just gives them an excuse to blame you instead of concentrating on the problem. I wouldn't have thought it would be a pretext for removing your mother though, would you, really? Are there any alternatives, just in case? - they might be better, of course!
You've made me smile, there, thinking of my ex. The quieter and more polite he got, the angrier it meant he was. By the time his every sentence was preceded by a split second pause and a throat clearance he was absolutely incandescent… But my goodness it's a technique that certainly used to work.
Hope it gets sorted quickly, and the scans are.. well, completely pointless would be ideal, wouldn't it! Best of luck, please update.
The Dr did send them signed statement NOT to give her the calcium. So they say they have stopped. I was so mad and raised my voice when talking to all. They will probably want to kick her out now since I am so problematic. She has dexa scan and cat scan this week. Hopefully will find what's going on. I don't believe it's the normal progression of her dementia because it's come on so fast. Sleeps all day tired joints ache urinated constantly. No uti though. I feel so bad because I can't have her with me and she doesn't like new place. She's lonely too. My father died last November and they were married 60 years.
Lizzy you must be frothing at the mouth and spitting feathers. I wouldn't blame you. Some fat-headed wombat decides your mother ought to be on bog-standard supplements and is then content to ignore everything you have to say - even if you didn't have POA it would still be so idiotic as to be beyond belief. Beyond belief, but, alas, as PamStegman et al point out, conforming to "guidelines." Best thing to do then, now you've been forewarned, is - as Pam also suggests - to get her MD to dot all i's, cross all t's and make her regimen so watertight that no guideline can run through it.
I wonder… would you meanwhile (and allowing for the fact that not all doctors are quite as punctilious or energetic as one might wish) get any mileage out of instructing the nursing home that if they insist on relying on the patient's consent to treatment, they must at least ensure that you or a comparable family member are present when that consent is obtained? Mind you, it just makes me even crosser to visualise the process by which they - ha! - got her consent to the new medication. Like fun they did. How absurd. How infuriating.
Best of luck going forward - there will be a way, meanwhile let's just hope nobody else at this in-house clinic gets any bright ideas.
Her doctor needs to write that order and possibly just forgot (?) Or thought he or she had given a verbal order tht should have been written down? A call to the office telling them what you have told us, that the facility is actually giving her the calcium and refuses to stop until there is a written order from them might do the trick. This is cookie-cutter/CYA medicine the facility is practicing - but technically they "have to" - though not really, THEY could take the initiative to call the doctor and get the order but won't do it either because heels are dug in or they are afraid to even "suggest" an order, though that's not the intent of the recent tightening up by HCFA and JCAHO. It should NOT be so hard to get a simple thing fixed.
That is true. They told the Dr they needed signed statement not to give it t o her,when he never wrote new prescription. Well I'm bad. I was p pretty just upset with them.
lizzy, no - facilities have to follow physicians orders - this has to be stopped and the office of long term care or the equivalent will not let this stand. Hospitals and other facilities have just become incredibly stricter about this, to the point of absolutely ridiculous calls to physicians to make sure that everything they do is covered by an order.
The thing is Amsterdam the Dr didn't write an order. The facility pharmacy ran an audit on all residents meds and thought she would benefit from this 2x a day. She was on it once a day but prescription ran out so Dr decided not to refill it. The facility sent this "suggestion" by there pharmacy to dry office and someone there checked the box that said "I agree with this" and signed. The facility said to me that's as good as a prescription.so we're going to give her a new double dose against my and drs wishes
Lizzy your DPOA paperwork means a lot, but nursing homes are required to follow the doctor's written orders. They are also put under pressure by state auditors who follow the cookie cutter orders that come from on high. These edicts are health care fads from the state capitol. Years ago they wanted everyone to take more iron. Now it's a calcium fad. I am my sister's guardian, and I still need written orders from an MD for changes. PLUS calcium is something that blocks other medications. So when they added the calcium to my sister, it blocked her seizure meds. Things got ugly, and so did I. But I still had to get the MD to write a stop order.
Power of attorney on health care issues does not always allow you to make decisions on health care. It must very be very specific. Unless the person you represent can not do it for themselves( coma,stroke) and your POA is not specific in it's wording, you have little to say. Even people taking anti-psychotic medication who have been a danger to themselves and others can refuse medication without the consulting their POA rep or their doctor. The same holds true for the myriad of other POA's one can hold and there are many. Unfortunately in a hospital, rehab or other facility many drugs are given to patients who clearly do not understand what they are taking but do so without argument because someone in a white coat hands it to them. Doctors will sign off on meds on only the recommendation of nurses or pharmacies involved with that client. If you have concerns consult the doctor directly or have your your mother tell them (while you are present) that she no longer wants to take them. Legally dementia does not mean incompetent when making a decision on the health care recommended by a physician. It's a sticky wicket, that one!
I don't buy it. we had the dpoa drawn up recently in California. my parents resided there until December. we had family trust redone also when father was alive because mothers diagnosis of dementia, I moved her to Washington state after my father passed in November because no family left there.
I understand the chain of events that set this off. bottom line is I cant believe that I have no say and assisted living and there pharmacy has all. I am not totally new. my father had every ailment in the book. but his mind was intact. so afeter 2 years caring for him, now my mother with dementia. which is ok. just don't like to be told I can do nothing and they will listen to nothing
I called attorney in California who drew up papers and waiting for answer. but I can not fathom that they can do whatever they want and my legal paperwork means nothing?
I don't buy it. we had the dpoa drawn up recently in California. my parents resided there until December. we had family trust redone also when father was alive because mothers diagnosis of dementia, I moved her to Washington state after my father passed in November because no family left there.
she has scheduled dexa scan and cat scan next week. later this evening caregiver informed that according to there classes and what she understood as Washington state law is that if my mother is inbally refuse a boarding home my health care power of attorney means nothing. she has to refuse. even late stage dementia patients in there care had to verbally refuse
ooh, Pam - I'm not sure I'd want to do THAT over calcium carbonate. If she does it will be guaranteed adversarial from then on out. There probably weren't any actual damage done, and I think she implied she was about to get it stopped, it just should not have been such a hassle. Pharmacy is trying to be helpful with their little bone health protocol, but they are doing the cookie-cutter thing with it, and a doc or a nurse practitioner who would have the authority who is swamped with paperwork can easily just check the little checkbox. That's why a person getting meds and anyone looking after them have to stay vigilant - mistakes like this happen all the time when a basically good protocol is misapplied.
Actually, the doc needs to look at her for hyperparthyroidism and renal function if he or she hasn't already.
PS try the ombudsman or grievance procedure which should be posted if you have to. And if they say you *really* have to get an incapacity letter or two so the healthcare POA is in full effect (I say "really" because, hey, why not just pleasantly cooperate with you instead, as if you were a caring person with at least the same desire as they have for your loved ones well-being??) I'd bet you could do that too. You just ask her doctors who have diagnosed dementia; it does not have to say much except that the person is unable to manage their own affairs due to the medicla diagnosis. It might be handy to have it anyways for financial POA issues; back in Pennsylvania, I had to have two of those to sell a house though other routine bill-paying and banking had not required it.
I always had troubles with that too. I had healthcare POA and HIPAA documents up the ying yang and made so many copies of them I lost count, but still, people want to mess with meds and don't want your input on it. I rarely had a doc that was enough of an ally that they would TALK with me about meds and get my input on past experiences before restarting or changing something, and the nurses tend to fuss when you want to see the current med list, but I kept insisting on doing just that, finally got it on a regular basis. I caught most - but not all - errors before harm was done. And then, I'd get called every time they wanted to put triple antibiotic ointment on a new spot, but you know what, at that point, I'd just say thaks for letting me know!
I'm going to guess your best bet is to tell folks your mom has had unusual reactions to meds, even something as innocuous as calcium carbonate, and you want to be contacted about all med changes. Make sure you are totally reasonable about it when they do want to try something and are willing to halfway explain why - I will admit to being very frustrated with people who like to refuse meds that are very low risk compared to the risk of the condition they are treating, just because they think there are "too many pills" given in general. SO, take an assertiveness training course somewhere, you're going to need it trying to deal with this and getting to win-win...Things are changing, but the old ways of paternalistic medicine, of there is one right way to do everything and one size fits all so don't question my judgement, are still very much with us in way too many settings.
Call the pharmacy and tell them your are filing a notice of claim for damages to a patient with hypercalcemia. They will recant. Then give the MD hell for not reading his damn faxes and tell him to rescind the order IN WRITING. Then report the entire medication error to the joint commission. That will make them wake up and smell the coffee.
its not that this particular drug could do severe harm, its basicly tums. its the point that I have no control over her meds? when I have healthcare poa? and there pharmacy has power over her healthcare?
the pharmacy for the facility, not the one my mother uses, did an audit an "suggested" she be on calcium carbonate for bones 600mg 2x a day. her dr. just took her off this as Monday because she is having other issues, hypercalcemia and until we get figured out ordered her off in writing. the facility faxed there pharmacys "suggestion" to drs office and someone there checked the box "i agree" and signed. facility says this was as good as a prescription. dr than called them at my request and said not to give to her. they told her dr they needed a written statement from.
Not sure of the legalities here, that probably varies by state. What meds do you want to refuse and why? More information will get you better, more informed answers.
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Then watch out for Home Health Care. If they want, they can call your dr. behind your back and even force your parent to move out of the place they live. My Mom has been combative only when having a fracture and on Tramedol. They want to give her Haldol (anti-psychotic for schizophrenics) and since I refused and director backed me up, they are trying to force me to move my Mom. Like we need this extra stress after everything else we are going through!
If a doctor is treating your mom, it's unreasonable to expect that he will call you every time there is a medication change. The management of elderly disease processes is often a bit of trial and error. To tie your doctor's hands on ALL of her meds isn't necessarily good care.
If your mom has been diagnosed with mild dementia, the doctor (or staff or whoever is telling you this) is on thin ice telling you that you can't over-rule doctor's orders. However, if your decisions can be seen as arbitrary and capricious, or not in the best interests of the patient they're treating, you can expect blow-back.
It bewilders me that some - and I'm pro-doctors on the whole, so I stress the "some" - doctors can be so hung-ho when it comes to altering prescriptions. I mean, this clinic is contracted to work with exclusively older patients: they must KNOW that, for the majority, this means patients whose regimen has been finely tweaked and adjusted over some years in pursuit of just the right balance. And then some callow wet-behind-the-ears bull-in-a-china-shop goes charging in waving a pharmaceutical company's marketing material, and it can take weeks to get them back to normal. If I were your mother's doctor I think I'd send them a stern one-line letter saying "DO NOT MEDDLE WITH MY PATIENT!!!"
The consent issue is a massive can of worms, though. So they're relying on your mother's competence and therefore her own consent to her treatment. So they should, theoretically, be able to demonstrate that the change(s) were explained to your mother, she understood the treatment plan, and she consented to it. Well. Wouldn't you love to have that conversation captured on cctv?
Then again, a doctor has to act in the best interests of his patient, consent or no. If consent is withheld he can protest, he can resign, but he shouldn't knowingly act in a way that could cause avoidable harm. So, they can treat without consent in certain circumstances. But to pretend that they're relying on the informed consent of a patient with dementia - that's got to be pretty thin ethical ice, surely.
So, if your DPOA was drawn up in one state and your mother is now living in another, is that also a potential weak link in the chain? Is there any suggestion that the NH can't rely on the validity of the POA?
Then again, there's the issue of how much of this current situation is the result of working practices that are simply quicker and easier - easier not to contact you or your mother's doctor, easier to follow guidelines without thinking them through, quicker not to worry the staff's collective head about how to get round a given problem? I understand exactly how you feel, but it is - as you already know - a pity that you raised your voice (I'd have struggled not to kick anyone, personally) - it just gives them an excuse to blame you instead of concentrating on the problem. I wouldn't have thought it would be a pretext for removing your mother though, would you, really? Are there any alternatives, just in case? - they might be better, of course!
You've made me smile, there, thinking of my ex. The quieter and more polite he got, the angrier it meant he was. By the time his every sentence was preceded by a split second pause and a throat clearance he was absolutely incandescent… But my goodness it's a technique that certainly used to work.
Hope it gets sorted quickly, and the scans are.. well, completely pointless would be ideal, wouldn't it! Best of luck, please update.
I wonder… would you meanwhile (and allowing for the fact that not all doctors are quite as punctilious or energetic as one might wish) get any mileage out of instructing the nursing home that if they insist on relying on the patient's consent to treatment, they must at least ensure that you or a comparable family member are present when that consent is obtained? Mind you, it just makes me even crosser to visualise the process by which they - ha! - got her consent to the new medication. Like fun they did. How absurd. How infuriating.
Best of luck going forward - there will be a way, meanwhile let's just hope nobody else at this in-house clinic gets any bright ideas.
PLUS calcium is something that blocks other medications. So when they added the calcium to my sister, it blocked her seizure meds. Things got ugly, and so did I. But I still had to get the MD to write a stop order.
Unless the person you represent can not do it for themselves( coma,stroke) and your POA is not specific in it's wording, you have little to say.
Even people taking anti-psychotic medication who have been a danger to themselves and others can refuse medication without the consulting their POA rep or their doctor.
The same holds true for the myriad of other POA's one can hold and there are many.
Unfortunately in a hospital, rehab or other facility many drugs are given to patients who clearly do not understand what they are taking but do so without argument because someone in a white coat hands it to them.
Doctors will sign off on meds on only the recommendation of nurses or pharmacies involved with that client.
If you have concerns consult the doctor directly or have your your mother tell them (while you are present) that she no longer wants to take them.
Legally dementia does not mean incompetent when making a decision on the health care recommended by a physician.
It's a sticky wicket, that one!
Actually, the doc needs to look at her for hyperparthyroidism and renal function if he or she hasn't already.
Best regards and best wishes!
I'm going to guess your best bet is to tell folks your mom has had unusual reactions to meds, even something as innocuous as calcium carbonate, and you want to be contacted about all med changes. Make sure you are totally reasonable about it when they do want to try something and are willing to halfway explain why - I will admit to being very frustrated with people who like to refuse meds that are very low risk compared to the risk of the condition they are treating, just because they think there are "too many pills" given in general. SO, take an assertiveness training course somewhere, you're going to need it trying to deal with this and getting to win-win...Things are changing, but the old ways of paternalistic medicine, of there is one right way to do everything and one size fits all so don't question my judgement, are still very much with us in way too many settings.