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You say the drug they suggested your Mom take was not for those with Dementia. I read that about one of the medications prescribed for my Dad, too. (Can't remember the name of it, at the moment.) I told my sister about it, and swore I'd not allow them prescribing it for him. But the orders changed to something else. They can tap dance around anything, it seems. I'm always getting explanations by someone about something, explaining away their reasons for some action. It makes you wonder who to believe sometimes, and is generally frightening. Since I'm no Pharmacist or Physician, I have to rely on the "expertise" of others, who prescribe these things every day. I figure they know more than me about these matters. Nevertheless, when I research things on line, or read the package inserts, I too, am disconcerted by their warnings.
I asked a Physician about it. He told me that they have to report negative reactions by anyone who's ever taken that medication. These can be anything from headaches, to dizziness, nausea, earaches, toothaches...etc., and the list can be quite extensive. They say it doesn't mean that taking the med will necessarily cause these symptoms, but that it has in "some people, at some time." As for the "not for those with Dementia" question, I never got a clear answer when I asked it. So, I'm just as curious as you are. I've also been told that not all we read on the Internet is reliable. Now, who are we supposed to trust??? Good question!
For all they have tried, and for all they are prescribing, nothing has seemed to curb Dad's negative behavioral tendencies. Some days I wish he would progress out of the angry stage he's in, rather than play guinea pig to these failing experiments. And some days, I just want to cry for him. Alzheimer's and Dementia are not kind. A friend, who's also a nurse, told me that every behavior has a reason. It's our job to find out what they are trying to communicate through the behavior. But it seems the medical profession wants to treat the behavior, without always investigating or eliminating the cause.
Sorry to hear your Mom and family are strugglingwith this issue , too. Seems to be a common struggle... It's hard to see this happen to our loved ones, isn't it? And it's hard to be their advocate, when we don't have all the necessary answers.
The visiting nurse called me yesterday morning and told me that he broke both of his big toes because of kicking doors after we left on Fathers Day. I cry all the time thinking about leaving him there, but I know that there is no other option. He threatened my mom and his in home caregiver, so we have no choice. I just keep telling myself that he knew this was going to happen because he went through it with my grandmother and that is why he bought the long term care insurance.
I hope this will help you. Please let us know how you make out.
The other tip I can offer is that if antipsychotics are used, and some Parkinsonism results but the drug is really too helpful to quit, add a little Cogentin, just 0.5 to 1.0 mg twice a day adn that will typically help quite a bit. Some places I go to do consultations, we are forever treating increased falls and sawllowing problems resulting from overuse of these meds without good side effect awareness. Some docs are just horrid side-effect deniers, and it gets to be ridiculous sometimes - I have heard colleagues deny that there could be problems when the patient is reporting the top three things listed in the PDR! I guess you can tell which of us have ever had to take meds ourselves... :-)
PS - if anyone has tips on how to tactfully and effectively request that no one change ANY medication without consulting you first (my mom is ridiculously side effect prone and most of the the things docs would normally want to try for her various conditions are "been there done that" and we need a T-shirt that says "Never Again" or "No higher dose please!" Docs also forget that if someone if not on the usual first line med for something, there might be a GOOD reason rather than "geez - wonder why the first doctor never even thought of that... but I'll just go ahead and start some right away!"
I got the doctor to agree to discontinue Seroquel (very low dose, too!), giver her a week and try something else. Ativan. That seems much less damaging on the side effect side, but eventually she had these weird agonizing bladder distention problems, urine retention. They were almost ready to eternally catherize her (and put her in nursing home), when my RN nurse happened to mention this was common side effect of Ativan. So we stopped that and so did the bladder agony. A withdrawal side effect might have been morning leg cramps. Anyway a few weeks of that, and they stopped.
Guess what? Mom has been off all psycho drugs for a month or so, and has had absolutely no delusional behavior...no "wanna die, just let me die" stuff, no DeadZone impersonations, no pulling of hair and gnashing of teeth. A friend's elderly mother was hospitalized for a few days and they gave her Ativan just in case, and she had paranoid delusions all night long. Just the opposite of what the drug is supposed to control.
Mom is "ok" now, nothing wrong at all, cept memory loss and boredom. She's learning to write again, starting with alphabet. She's just returned to a few days at the senior day care center. This has been a whole year of Mom's insanity... and now everything is FINE?? What the heck?
We've just started her back on small dose of Zoloft and one BP pill, and that's it. As I mentioned, I blogged about all the ups and downs since January in my whendoesthegladstart blog. just google the phrase and you'll find it easily.
I would try a tiny, tiny dose of Ativan or Xanax before I would remotely consider a tiny, tiny dose of Seroquel.
It messes with your blood sugar and cholesterol also.
Once I realized Mom's bizarre behavior and physical side effects were probably due to the Seroquel, I stopped researching. But the blood sugar problem might have had to do with attention span, wooziness, etc. Now I don't remember. Learning about the bladder distention/urine retention problem was just a fluke; myRN niece used to work in a geriatric psyche ward (handy to have as a resource, eh?) and told me about the urine retention problem with the Ativan and similar drugs. If I hadn't heard about it from her, Mom would probably be in a NH,fully catheterized and drugged like a zombie. Once we got her off Ativan, no problems with that...and no problems with delusions. What the heck! A full year of insanity. Better living through chemistry.
Babs
There were BIG WARNINGS that this is not to be given to elderly dementia patients. These were both on TV when they were advertising the drug, and on advertisements on sidebar ads on the web...scrolling type with this warning! Look for side effects of choking, facial contortions, rolling eyes, pulling hair like melodramatic crazy person, sticking out tongue like it doesn't fit in their mouth or they are straining at it. Oh, this could very backfire into "Seroquel Anger," Let's see, death is a nice side effect, caused by heart problems. A lot of these side effects are non reversible apparently. My mother apparently survived this mess, but how many months as insanity caused by Seroquel. She was then Rx'd Ativan, which had less side effects.
I imagine that the dose will continue to be increased until your husband is a zombie. That is the inclination, right? if the behavior isn't controlled, up the dose. Seroquel caused anger in my mother, a snappy impatience. Really who can tell if it's the Alzheimer's progressing or if it is a drug? I'd ask to have it changed.
OH, body stiffening so severe that she straightened like a board and slide off the chair. Falling over in her chair so I had to tie her up. I have a whole pile of ties her for restraining her. EVIL. I finally had her taken of Ativan as well, and she hasn't had ONE delusional episode since. Sorry if I repeat myself. She was driven whacko in the first place because she could not understand the acid reflux and gas was NOT a heart attack. She thought she was dying. So then she was given a whole nightmare of physical symptoms with these two anti-psychotic/anxiety drugs. And nobody wants to be responsible for it. Impunity for all, except my mother.
You can also go on twitter and search the term. The people who post about it are really psychotic cases... those with dementia are obviously too out of it to post about their side effects, nor can they relate that their symptoms are due to the drug and not themselves and the Alz condition.
I pray for you to get through this. Do research online, please (user forums, not official site) also search this site for the term. You will find others with bad experiences.
But you know what, they (doctors) don't done KNOW nuttin about all this. It seems to be a big crapshoot, with our parents as the guinea pigs and "there are no medications without side effects" and"part of normal Alzheimer's decline" as their impunity shield.
As much as I eventually decided to X the Ativan, it could be useful for knocking back weird behavior once the patients starts on a rant. the pills are so small, that a half a pill would do a lot, even quarter.
I at first assumed I should use it regularly to stop attacks before they even began, and dished it out a half pill at bedtime, and a quarter in AM. And for awhile it quelled outbursts. And then and then and then...
Just to let you know that this Ativan can take effect in about a half hour. My ER intake-desk nurse niece said that they used Ativan to calm relatives who had someone die in the ER.
However, if the patient is already upset, good luck getting any kind of pill or food down them. I keep it on hand just in case, and darn if there is now no "case." for now...who knows what the next day will bring.
Glad to know about Depakote. There was a funny (written in joking style) report about the side effects of that drug on one of the reporting sites. Said it would make you an instant elderly person. Would of course read up on it totally before I had mom get on it.
Please be careful with the Depakote, I've taken both for PTSD and I would not recommend either. But....I don't know what dose your mother will be taking, her health status or how old she is. If she needs to gain weight it will take care of that.... and some people lose a lot of their hair (I didn't though).
God Bless
Anyway, the point was, all drugs have the potential for nasty side effects, especially drugs that alter brain chemistry. However, when someone starts to exhibit angry, confrontational behaviour, it can be very distressing not only for the people around that behaviour, but also for the person exhibiting that behaviour. People with dementia may well be aware that their behaviour is changing & may be embarrassed & ashamed of their inability to control their behaviour.
Unfortunately, using anti-psychotic drugs, mood stabilisers, anti-depressants etc, can be a bit of a gamble. There is not a lot known about how these drugs work, but we do know that they DO work...not for everyone, but they DO work. Sometimes it's a matter of trying a few different ones until the right one is discovered. It's not a very precise science.
If you're going to go down this road, just be sure that your mom is carefully monitored for changes in her mood, behaviour, also blood pressure, other vital signs, relevent blood tests (for example, liver function needs to be monitored with Depakote) & you need to be able to trust the doctor. If not, get a second opinion. Also, be sure that other methods of behaviour management should have been tried before going down the medication road. Ask the facility what they have tried. If you haven't already, perhaps get in touch with a dementia support group to see if you can get some education about behaviour management in dementia care.
Good luck
My bipolar brother also takes Seroquel, also as a pre-bedtime medication.
I have also heard from other CGs whose loved ones have the same diagnosis as my husband that Seroquel was not effective, or that it even made matters worse (which stopping the drug solved.) When treating disorders, ESPECIALLY problems in the BRAIN, what works magic for one is a nightmare for someone else.
I would ask, how qualified is the doctor you are dealing with to treat the condition your loved one has? Can you get a second opionion from a specialist if that is appropriate? Is the doctor going to start with a very small dose and instruct you what to watch for by way of side effects and effectiveness? Is he or she going to approach this as a "trial period" and be willing to stop it and try something else?
WIth any drug there is a risk it won't work or it will temporarily make matters worse. And it is true that some LTC places overmedicate for their own convenience. For this reason some people shy away from drugs. I am a huge fan of drug treatments, carefully thought out and slowly, watchfully administered. Better living through chemistry is my motto! :) I saw what my husband was like without drugs, and what a huge positive difference they have made in our lives.
Be cautious, Sunshine. But also be brave!
I'm not sure what they called it when she was in her 30-40's when I was first
exposed to it, but It's about the same behavior except she doesn't threaten us
anymore. Psychiatrist prescribed Celexa, an anti depressant, for use during the
day to try to wean off Seroquel. I have noticed an involuntary twitch that I read
was a side effect of Seroquel. Mother's Geri psych says it is effective in the lower
doses. Psychotics are prescribed 300mg and up! The doses given elderly are very low! (God please have mercy on us.) hugs, Christina