My Mom (90) has dementia and I am her 24/7 carer. I am now in a dilemma about medication. Advice?

My mom was taken OFF Aricept at the point of moderate dementia. It was not helping her anymore.

As a nurse of 30yrs. in various settings,ICU/OR the info flowgo is giving out is along the line of a little education is a dangerous thing.Flowgo if hospitals are so dangerous please quit going to them, just stay at home and hide under the covers.Reading your posts it sounds like you forgot to take your meds, the obsessive/paranoia in your writings is very pronounced.If you know so much about meds why do you even go to a hospital? Just stay home.

I think there is quite a lot on here about choosing care homes for our nearest and dearest. I would hate for anyone to think that ALL care homes, nursing homes, hospices etc are bad, use malpractice as a rule or indeed abuse elders.

That said there are some bad ones and they hit the headlines in a big way once their practices are uncovered. If and when I have to place Mum in care and I dont plan on it but who know what the future will bring then i have a checklist that I will want to see.

My first check is to do a background check on the home, have they been under enforcement to improve - now this isn't always a negative it could mean that as a result of changes the home is now vastly improved. so the checks need to show past and present performance (that way you can also see if they are improving all the time or not!) In the UK that is a CQC check in the states I think there is a link to checks via this site: usatoday/story/news/2015/02/20/cms-nursing-home-ratings-lowered/23732385/
and I would absolutely do that check first.

Ratings in the US have dropped as a result of the new legistion re drug usage so something IS being done about drug use/abuse

Once I had done that, then I have got a list of NEARBY homes that are possibles. I would avoid any that had drops in ratings for drug abuses ALWAYS. Nearby to me that is because I would want to be able to visit and monitor closely in the early stages (but I can be a bit OCD in this arena but I make no apology for that).

I would arrange a formal visit appointment etc and I would NOT expect to be able to smell faeces or urine during that visit (You will sometimes get that smell when commodes are being sluiced). This should be a visit round the place an identification of the activities, religious events they hold, bathing areas, kitchen and sample menus, gardens etc alongside a discussion of mum's needs and costs of meeting those needs.

I would shortlist from this

From the shortlist I would then want to visit the homes unannounced and then test the smells again We call it fur coat and no drawers over here but the general meaning is that it is easy to put on a glossy performance for a formal visit less so to keep that up permanently. So while they may be wearing their fur coat when you visit you would want to see that they were 'properly dressed' underneath too!

You should by now be down to 2 or 3 that you may be thinking about. Time to take up references from relatives. Any good care home will give your number to people (not the other way round) so that they can call you re a reference. Failing that locals will know. Even shop owners who deliver there.

One care home I knew bought their food from a local shop who delivered. the cheapest cuts of meat, the cheapest biscuits, the cheapest yogurts - all indicators of cost cutting but not necessarily of poor care.

If I couldn't get my list down to one care home I might try to negotiate a stay for my Mum in each of the three to see which one she liked best. I would certainly spend a good part of the day with her to see what was going on then leave her for a day then go back for a day.

After 3 weeks (one in each home) you will KNOW which is best FOR HER.

Now I appreciate this isn't always possible but if it isnt do spend a bit of time early on supporting her transition and making sure she is cared for and if she isnt REPORT IT. Put in writing that you want to be kept informed of any changes in meds and/or behaviour and you want a weekly/monthly review with her key worker. if this doesn't happen you have something concrete to complain against.

Hope that helps you all


xxxxxxx

LOL Life experience. I used to train care home workers (not the nurses) in control of infection and contamination, adminstration of medication and safeguarding and have written a few books on it PURELY for educational purposes not for resale as well as a few bits and bobs on dementia but familial caring is a wole new ball game as it is 24/7 mind numbing and tiring work unlike the carehome facility caregiver who gets paid, does a shift and then goes home

hi jude, you answered my question with your PS! lol thanks

Flowgo I live in Britain and as part of my job I visited hundred of care homes almost ALL fo which had staff that needed training for one reason or another. Did I see first hand abuse? Yes Did I report it immediately? For sure I did. Was it investigated? Too darn right it was? Were there consequences? Absolutely there were.

Any medication given to a patient has to be recorded for a whole host of reasons, not the least of which is response to allegations of malpractice.
This is the same in USA

Rights of Medication Administration
Reference: Nursing2012 Drug Handbook. (2012). Lippincott Williams & Wilkins: Philadelphia, Pennsylvania.

1. Right patient

Check the name on the order and the patient.
Use 2 identifiers.
Ask patient to identify himself/herself.
When available, use technology (for example, bar-code system).

2. Right medication

Check the medication label.
Check the order.

3. Right dose

Check the order.
Confirm appropriateness of the dose using a current drug reference.
If necessary, calculate the dose and have another nurse calculate the dose as well.

4. Right route

Again, check the order and appropriateness of the route ordered.
Confirm that the patient can take or receive the medication by the ordered route.

5. Right time

Check the frequency of the ordered medication.
Double-check that you are giving the ordered dose at the correct time.
Confirm when the last dose was given.

6. Right documentation

Document administration AFTER giving the ordered medication.
Chart the time, route, and any other specific information as necessary. For example, the site of an injection or any laboratory value or vital sign that needed to be checked before giving the drug.

7. Right reason

Confirm the rationale for the ordered medication. What is the patient’s history? Why is he/she taking this medication?
Revisit the reasons for long-term medication use.

8. Right response

Make sure that the drug led to the desired effect. If an antihypertensive was given, has his/her blood pressure improved? Does the patient verbalize improvement in depression while on an antidepressant?
Be sure to document your monitoring of the patient and any other nursing interventions that are applicable.

If there is a refusal by the family it would not override the individual's wishes if it was deemed they had capacity to make a decision and medication can be refused or accepted at any time. The problem is if she is prescribed medication and refuses it the professionals have no choice but not to administer and to record the refusal. In the event that too high a dose or an overdose was administered in error AND THAT ERROR WAS PICKED UP then it would have been recorded and the doctors notified for advice.

It is EXTREMELY UNLIKELY that 3 or 4 separate nurses on 3 or 4 separate occasions over any length of time (bearing in mind the longer the time the more staff that would be involved) would consistently and persistently overmedicate someone

In the UK DBS checks (background checks) are absolutely mandatory and staff may not work until they have been done (although I do know that in some exceptional circumstances they are allowed to work but only if supervised 100% of the time.

Federal and state laws require nursing homes, adult day cares, home health care providers, and personal care homes to conduct employee background checks prior to hiring employees or administrators. However these do have shortcomings which are usually financially related .

An investigator may not speak to you but they sure as h*ll will speak to a lawyer or indeed the press.

Is there abuse in NH? Yes absolutely BUT NOT IN EVERY ESTABLISHMENT in fact NOT IN MANY ESTABLISHMENTS. All the nurses that have worked in hopitals AL NH and are now on here because they are looking after their iwn families, I am sure, will agree with me. If there is culpable abuse - report it and keep reporting it till it is dealt with. Don't tar everyone with the same brush for the majority do their very best to ensure a patient's comfort

PS I AM NOT A NURSE OR A DOCTOR

my mother is 80 and has dementia she is on aricept /donezepil and it has done wonders as far as helping her memory...she doing things she hasnt done in at least a year..small things like turning off lights but a year ago the lights would burn day and night at this stage ill take every small improvement

Aricept has worked on some elders also namendia. It is ativan and haldol sedatives that are the ones that are terrible for elders.

We tried my 90 year old dad on Aricept...Side effects within a week were noticeable. I stopped giving the tablets/ meds to him. Wasn't worth it .
He fell 3 times and nose bleeds I know every -person situation is different.
Be calm..listen...hug her if she lets you Annie... Sometimes its better than medicine.
Be well xo

What country are you from vstefans?

JudeAH53 Sleepy is not what I was referring to as an overdose. My mom had complications from it. She had the symptoms from being overdosed not just once. There was no reason for it since she did have a sensitivity and she was not doing anything to need sedation. The investigators admitted that she got enough to do great bodily harm and death. They were talking about overdosing for someone who can handle it. She not only could not handle it because of her age but because of her sensitivity to it. She had this sensitivity before she became elderly. It was in her chart it. Family and she refused the drugs.They were still given even when she was in the hospital in a drug induced overdose coma for no reason other than convenience or something evil and trying to recover from another overdose. she was even tricked into taking these powerful sedatives when she refused. I have heard of these situations from all kinds of people that I have talked to in person and the internet. This is a real problem. That is why I call these kind of medical staff drug pushers.

If there are already laws in place then they need to be changed and enforced to protect patients not just protect medical staff. Laws to protect patients are almost non existent.There are too many patients that are being over medicated out of their minds or into a coma or vegetative state. There was never a reason to to this to my mom that is a fact.With elders they can just say that the patient is getting dementia if they don't have it already or they are declining because of their age or whatever they are in the hospital for. Actually anyone would become demented if given enough sedatives or given more than they can handle such as with elders or people with sensitivities.There needs to be regular drug testing and very close monitoring of drugs and patients. Autopsies and investigations done with suspicious deaths. There needs to be someone responsible watching over the medical staff to make sure they do the right thing because there is way to much wrong. A lot has to change. People need to be aware of these problems so changes can be made.There is also too much medical neglect like what they did with my mom.They would not treat my moms hospital fungal skin infection that she got when she had an elective procedure done in the hospital. This infection was also very treatable. A doctor had even diagnosed it, yet no one bothered to treat it. At first all it needed was some anti-fungal cream and oral fungal med but nothing was done as it continued to get worse with the medical neglect and every time she went back to the hospital for drug complications she was was given antibiotics to make it worse. I'm not sure if they were getting kickbacks but it would not surprise me. I'm also not sure if the were charging for the treatment that they were not giving her but that would not surprise me I guess I need more investigation done to find out. I need to talk to her insurance to find out if they were charging for treatment that they were not doing. That is too easy to get away with.

You can generally insist on being called for every medication change and have preferences in writing. Then they will also call you if they start a topical antibiotic, but that's better than not knowing about other stuff. But, don't tie their hands totally either - some drugs that are bad for most people of a certain age may, maybe in lower dose, be just the ticket for some of us. To give you an example - they did not want to give Mom neurontin for what I thought was CRPS once the ruled out DVT and HO - "oh, that's got so many side effects for older women" and put her on Cymbalta instead, and she had a moderately bad time wiht that, less depressed, a little less pain, but hallucinations. Neurontin worked like a charm. I was kicking myself for not being more insistent, but then later I talked them into trying something else that totally backfired (pioglitazone.) Oh well. I tried Neurontin myself for a migraine preventive and got too much fluid retention to tolerate it; mom got bad fluid retention that made her heart worse on the piaglitazone. A smart internist switched her to Januvia which worked wonders. I had someone else not want to try Sinemet for her Parkinsonism, and that was awesomely helpful for her. I would not let them stop it even in hospice, just because she could feed herself with so much less tremor when she got it to the right dose, she did not have to feel embarrassed or depressed about someone feeding her. And one antibiotic with a bad rep, clindamycin, was just the ticket for both my mom and for me. I wish we had better ways of predicting besides just trying stuff and watching carefully, but for most things we just don't yet.

No, flowgo, they don't let us take kickbacks! We can;t even collect pens and notepads anymore :-) at least not in academia!

Flowgo could you back that up? If so then you should and must report it for it is NOT USUAL. As I said earlier the law is exceptionally clear on medication. Sometimes calming medication is prescribed to alleviate the anxiety being experienced and yes that may make someone sleepy but that is a far cry from the abuse of medication you describe.

Sedatives however are prescribed and therefore would not be available to hand out to all and sundry. it would be highly illegal on several grounds and would result in prisonable sentences.

Reviews should be held 6 monthly or annually or sooner if a channge is noticed and all parties should be present. it should also be recorded and the courts would be able to access that in the event you reported mapractice.

Just for the record if you have seen this malpractice and have NOT REPORTED it then you too could be deemed responsible so if I were you I would report it immediately with evidence.

This happens in hospital or nursing home settings. That is why I say to always either be there with your loved one or have someone you trust be with them that can make sure this does not happen. I did not realize you could not trust the medical staff to not drug. I thought my mom was safe. If you insist that you re loved one has no sedatives and someone is always there in a hospital or nursing home then you have a better fighting chance at keeping your loved one safe. If you get lucky and get staff who have good morals then you also maybe safe but I would not count on that. It also makes it worse if your loved one has a D.N.R. cause evil staff use those to their advantage. They can drug the patient as much as they want and they will not have to do cpr if they go into cardiac arrest or have a stroke as a result of the overdose,

Flowgo there is no law to change. The law is very very clear onm medical abuse
Examples of healthcare fraud and abuse regarding elders include

Not providing healthcare, but charging for it
Overcharging or double-billing for medical care or services
Getting kickbacks for referrals to other providers or for prescribing certain drugs
Overmedicating or undermedicating
Recommending fraudulent remedies for illnesses or other medical conditions
Medicaid fraud

I have seen them medicate just because of their age. If the person is an elder then they medicate, even if the person is completely calm, even if the person is already in a coma from a previous overdosed coma, even if the person tells the nurse no and the family says no and it is on the persons chart. They still medicate. They medicate for no reason at all and do great bodily harm and kill too many people as a result. I am actually trying to figure out ways to change the laws so this does not happen. I have had experience with all of this.

I know I'm a broken record, but no nurse can dispense a drug without a doctor's order. Ur parent/lovedone has rights in a nursing/care facility, again, its considered their home. Hopefully, u all have medical POA. These facilities should call u before any new med is introduced. Stipulate u want this done. But do remember, that when out o familiar surroundings they can get agressive. If it means hurting themselves or others, they will medicate. Just don't know why they have to make them zombies.

I think that is true that they push drugs not only because doctors get incentives and drugs are big business, but also because if nurses are taking care of more than one patient at a time they need some of the patients to be restrained or unconscious, Its abuse but yeah it does keep them down. What I hate is nurses who automatically drug anyone over a certain age. These patients are given dangerous drugs like haldol. This drug is supposed to be ban, it is so strong but yet they are giving this kind of drug to elders who cant handle it. I guess it was ban from population of a certain age. Elders do not count. Adivan is another one that is dangerous for elders. I think the patients safety even if elder still comes first. My mom was quiet whenever she was drugged cause she was in a coma/vegetative state every time. she was drugged. Most people do act demented when severely drugged.When she was like that they tried to tell me she was in the end stages of dementia. Like they think I'm supposed to believe them.They could not fool me, I knew exactly when she was drugged. There are other drugs that are not that strong and are made for dementia problems such as nemendia or aricept. I have known people who took these when they were just having memory problems and did not have dementia.

Hopefully, the nurse is a nurse practicioner. A regular RN cannot write prescriptions. Why any meds for a last stage Alz patient? No meds can be given by medical staff unless a doctor prescribes it. I would request the doctors on duty call u before they give any new meds. If u don't agree get the primary involved. I feel the reason they push meds is to keep the patient quiet and at night from wandering. Makes their jobs asier.

Thank you very much to everyone who has answered my question. I really appreciate your advice and honest thoughts. It is the first time I've asked a question of my own and it is wonderful to get replies and helps me realise I'm not struggling alone.
Sorry for the delay in thanking you all, but Mom has been unwell for a few days which has taken my last drops of daily energy. Thankfully she seems to be recovering now. This of course has made me realise how difficult it is to have someone with dementia tell you what is wrong/hurting and how desperately helpless that can make you feel.
Thanks again for your support. So glad you are there!

thanks for your honesty JudeAH53...NO, it's not easy for MOST! take care..

Mum is on donepezil and the difference is astounding and she is late in the moderate stage of dementia Alz and vascular. We still have some dreadful days but they are much further apart. HOWEVER it doesn't suit everyone, you need to be prepared for side effects - lack of sleep being the worst - mum manages about 3 hours a day and the rest of the time she wants to talk.
Now Im sorry if this offends anyone - well actually no Im not ...I am just being honest. I am a selfish cow - first to admit it and I can't stand idle chatter - it drives me nuts. So to have it in my ear for 20 plus hours a day is mindblowing. I like my own company, I dont particular care to talk to people just for the sake of it.

My advice would be start on the lower dose and trial it for about 3 weeks....less if there is a reaction. If all is better then continue to the higher dose if it has no effect then it is pointless taking it. (her taking it that is not you!) Our psych told us this. Donepezil takes you back about a year in terms of memory: ie she has got the memory she had a year ago but it will still decline. just a year behind what it would otherwise have done. I hope that gives you some insight as to whether it is suitable but like others I would NEVER act on what ANY nurse told me I would wait for the doc to prescribe.

I would make sure you can trust your doctor and make sure they are not a drug pusher because most of them even the ones that seem trustworthy are drug pushers. They get kickbacks for pushing drugs.

I'm usually in favor of trying something because nearly all side effects are reversible, and most people do not get most side effects, or nothing would be on the market. Aricept is donezepil and is really different than memantine...YMMV but you could try it at a good time starting at a low dose and see how it goes. My mom got cranky on Namenda and had hallucinations on Cymbalta, though it helped her neuropathic pain. Sinement and neurontin were much more helpful and no bad effects at all. Pioglitazone was bad for her - fluid retention too much for her heart; Januvia finally meant she wasn't ravenously hungry all the time...for the longest time no one would try anything besides just more insulin.

If your doc will be honest with you about pros and cons of a drug and can reassure you that if after a reasonable trial to get used to ***minor** side effects if any, it can be stopped you might want to try.

my mother is 84yrs old and has dementia. She can't take any of that medication and when we have tried something she would become completely lethargic and limp! She's not in pain...and that is my main concern at this point in her life.

Another thing, they did the same thing with my mom when she was trying to recover from the horrible reactions that she had. She kept getting more complications and had to go back to the hospital for the severe reactions she was getting which they would say was because of her age. Everything is blamed on the age and dementia if the elder has dementia. Even if the elder does not have dementia they will usually have it after taking those powerful sedatives.Most anyone would.They will really act demented like when someone is on drugs they are not smart and do some weird things same as when and elder is all doped up and sometimes just the recommended dose or less will do that to them if it does not kill them first.The first time my mom was given ativan in the hospital she not only went into a coma for the day it took her a month to become her self again. She was out of it and looked totally demented. My mom told the hospital she was not to get sedatives and so did I. I would have long talks with them to explain how bad of a reaction she had to them and the complications. The medical staff did not care they gave it to her and overdosed her about three different times and this is with me and her telling them she cant take it. They will try to make you feel guilty but who cares it is your moms life that counts.There are too many medical staff that are drug pushers and that is why the family needs to protect their relatives from them.The only time they would not drug her is when I stayed 24 hours with her or they would drug her into a coma. She started to recover. It is horrible what these drugs do and how pushy the staff is even if no haldol adivan is written in the chart and they are told the patient cant have it. They will do their drug pushing thing anyway, It is big business. I would not them bully you cause they will bully. If this happens then there are organizations that may be able to help you ombudsman that can help and cchr/about-us/what-is-cchr.html hopefully this can help you also.

I don't have any experience with these meds but just wanted to offer support for your concern about trying something which causes you concern.

Let's see - the drug is for early stages; your mother is in a late stage. So why would the nurse be suggesting that drug?

We've stood up to more than a few doctors who wanted either my father or I to "just try it." If they persisted after I explained the specific drug (a) had been documented to create certain side effects, (b) was the subject of class action lawsuit (c) had been taken before and caused side effects....then we moved on and found another doctor.

Perhaps you could ask this nurse what would be more appropriate for your mother's stage of dementia, rather than an early stage? Read up for yourself what the side effects are, and if you feel up to it, get the technical information on the chemical structure and compounds to determine if anything in it is also an ingredient in the drug that caused problems. Or ask the nurse that question.

And what are the side effects of the drug he's recommending?

If you're uncomfortable, stand your ground. Late stage Alzheimer's is difficult enough for the patient without experiencing a drug reaction.

My mom did not have the same problem your mom has. She was an elder and was given that drug which she had a very bad reaction to. It would put her in a coma. .Adivan and haldol are not for someone that age. I also heard that it is not approved for elders with any kind of dementia. Im not sure if nemenda and aricept may help.There are also more medicines like that for your moms problem but research it first to see if about the problems it can cause. If you do decide to try these meds I would constantly look for symptoms that she may be having with these meds. like if she was getting worse mentally or experiencing other problems. I would not just blame it all on the dementia like medical staff like to do.The medical staff will never blame the sedatives or meds for the dementia getting worse cause they want the elder to take the meds. I myself would never give an elder adivan or haldol those are way to powerful and so dangerous and deadly.The person often goes down hill with these kind of meds and the cargiver may think they are going down hill from the dementia. Medical staff will also blame everything on the dementia instead of the real problem (haldol,adivan). It just makes them worse from what I have experienced and many people have been killed by them as well.