My mother's dementia is getting worse. She is hitting and scratching at bed time and diaper change time. Paranoid and agitated at night. Throwing things and having outbursts at her adult day care. She's in a good nursing home and sometimes it takes four people to get her into bed due to her anxiety.
But my family doesn't believe or is very wary of medication. I think it's worth a try since she is suffering so much. They don't visit as much as I am lately and I've told them to visit at night when it is the worst and to stay a couple of hours. I'm hoping one of them will attend her care meeting at the end of September for they have documented her outbursts. I have joint power of attorney with one of my brothers, so my hands are tied.
I have a feeling that they will agree eventually but in the meantime it is hard to see her suffer so. Does anyone have any advice? a book we could read? words of wisdom and experience?
Much gratitude,
megan

What kind of POA do you have btw? My father is on Namenda and Aricept.
I would avoid ativan if you can, only because it is so sedating..I've taken it myself.
The Namenda and Aricept combo works really well for my dad..but there are other medications and studies constantly being done for new ones.
She isn't happy. She is confused. Ask your brother to put himself in her mind.
Research the affects of Dementia on the mind.
My dad insists on walking away to "get his money" down the street.
We live in a housing tract. The closest store is at least 2 miles away. The direction he heads when he does this is the wrong direction. It takes a lot of convincing to get him back home.
He truly believes what he perceives. It must be so frightening sometimes.
I say it again. Show your brother this post...also I don't always consult my sister when making a decision. She's not here and doesn't see his day to day activity..in her defense though, she is taking care of her MIL who also suffers from dementia, so she is aware.
Read over the POA and make sure you understand your limitations and responsibility.
I can act without my sister's input if she is "unavailable or out of the county" which she is.
I just consult and inform her later. She also calls and talks to his neurologist on occasion.

My experience has been the right meds can be a blessing.It was finally good for my mother, my husband and my self.The problem lies when going through the trials and tribulations of finding the right ones.My experince , which at the time , horrible, taught me just how bad meds can be and how good.Some meds can make a bad situation worse, which I discovered for my self.Then the right meds were found, through my research, and I am able to do something and not allow life to stand still.I avoid any music that reminds me of my loved ones and brings sorrow.When I am going to that awful place in my mind, I say to my self, stop, you have to stopp thinking about the past and the sorrow that brought you to your kness, think of the good that was and the good that came from the experience

See I just came up with more for ya lol....the ole mind comes an goes in spurts

DIET!
Ive been screamin this issue from the rooftops for years now...well maybe not years....a couple of years yes....
Well it did start years ago because of MIL and her Diabetes but something I noticed was her behaviors were significantly better on a strict diet....
No sugars, starches, caffeine (that includes decaf...crap a$$ chemicals) ok so I have issues with chemicals. I am pro whole foods no canned boxed or frozen and DEFINITELY NO sugar substitutes of any color...blue pink yellow etc etc etc (did you understand that hun? I dont want the sugar substitute police comin down on me lol)
But I did find not only do these products give a higher BSL reading for a longer period of time it has been know to cause memory problems, sugar is healthier BUT honey is by far the best sweetener available I use it religiously for my MIL.
Unfortunately our lil caffeine lovers cant have that no more so I substituted the mornin ritual with chamomile tea...absotively no stimulants to be had in this bad boy of the tea world.
Food now there I shoulda became a dietitian...Eh theres still time for that I think.......Ok maybe not so Ill share my experience with my peeps
Lets see if anybunny remembers....
Toss out 3 square a day feed several fist sized portions a day instead more frequent feedings in smaller portions equals better behaviors (oh I like that)
If three square is a must then feed the largest meal at the beginning of the day verses the end because the heavier the meal at the end....well you did mention sundowning yes?
Bingo! Sundowning is better...well if you can imagine this issue better....
Lessen beef intake instead give poultry, fish, the "other white meat" give fresh veggies rather than canned (sodium is way too high and there again the ole chemical preservatives!)
BReads!
Absolutely beyond a shadow of a doubt no breads (ok so you can give as a treat every once in a while)
But if she is a big bread junkie clean her out for about a month (I know behaviors are gonna be off the hook but the end result is well worth this sacrifice)
Ok before you go there with the whole grain breads (here I go again) Uh uh no no no it is still a bread/starch/chemical up in that soft, cushy, slice, loaf, round, yummy smellin, callin my name, OMG GIMME A SLICE OF SOURDOUGH, bread.
didja get all that?
No Im not a bread junkie but I do enjoy a round of sourdough every now an again all to myself an Ill bite any hand that EVEN tries to snatch that bad boy from me
Ok I think Ill letcha mull on this a lil before I get real hardcore on ya

quote:

and we're trying an herbal remedy for anxiety and depression

Megan please proceed with caution, there could be contraindications when mixing herbals with medications shes already on.
Check with Drug checker before administering these types of herbals.
Here is the link to Drug checker:
http://www.drugs.com/drug_interactions.html

Torp has a great suggestion on a med to try although it is a short lived med it works wonderfully while its effective ie Remeron.
Lorazepam/Ativan should be if she just started .5mgs prn, maybe the first few times she might be groggy but she should level out after that.
but then again she may be sensitive to it.
If thats the case try cutting the tab in half and see if that is any better.
My MIL is on Namenda as well as Trazedone (Trazedone took the place of Lorzepam since it didnt work too well on her) again proving not all meds work for all people.

Who exactly is asst. her with her ADL's is this a caregiver or a family member?
Male or female?
How do they approach her?
Being as how there are memory issues stating a procedure to them is preferable than giving choices.
"Ok mom its time to change your depends" rather than "Mom can we change your depends?"
"Mom would you like to go to bed now?"
better still:
"Mom its time to get ready for bed lets get your nightgown on"
State it like its a fact and not a question and if this is a caregiver have them do the same.
It may sound a little rude, its not.
Its what they understand best.
She may try to wiggle out of it but you just have to keep on track, in fact if its changing to evening clothes and a depends change have them in hand ie ready everything before you start to do anything with her...this applies to everything you need her to do whether its showering eating getting her ready for an appt etc etc.
Keep your voice monotone dont get angered dont joke just state facts.
For the sundowning many of us have problems with this there shouldnt be naps unless absolutely necessary try to get her out in the sun (when there is sun) at least once a day even if its just a short walk.
Keep rooms light and bright during the day, shut curtains at night and turn the lights on to prevent shadowing (this causes agitation and paranoid delusions when seeing shadows) mirrors are also bothersome but theres not much you can do about this issue barring taking them down or covering them (you just might find her having a conversation with the person in one) I know Iv seen this first hand w/my MIL I took all mirrors down except of course the ones in the bathrooms which was the offender **chuckle**
Most importantly try to find the humor in this...I know thats a tall order but it helps our mind if ya nowaddimean
One other thing keep the number of people in her realm to a minimum, if there are visitors keep the visits short and only 1-2 people at a time and make sure they keep calm (voices) too much stimulation leads to outbursts later.
Im sure there is much more but thats all my mind can come up with now lol
Whenever your in a pickle just give us a holler and ask between us all we go an answer or a direction to point you to

Ativan made my MIL a zombie and more of a fall risk.

We had pretty good luck, at least initially, with Remeron. It's a tricyclic antidepressant. It was given near bedtime so that the drowsy side effect helped to calm her and helped her to sleep. After the first week or so, the effect of being still drowsy the next day had worn off but her anxiety was lessened. And it helped stimulate her appetite, which was a needed side effect; she was on a hunger strike.

Thanks for all your responses. It was great to read about your experiences and get your advice. Since I wrote to you we tried Ativan 2x a day and she was too sedated. My brother reluctantly OKed it temporarily because the nurses requested it. We're going to go back to Ativan prn or as needed and we're trying an herbal remedy for anxiety and depression. It's called Clarion and has St. John's Wort, 5-HTP, Valerian root and other herbs in it.
I don't have a lot of hope for it because I think she needs something stronger but it would be great if it helped her, of course. My brother has agreed to have her see the doctor, if Clarion doesn't work. I know the side effects can be terrible for psychotropic medications and my mother is very sensitive to medication. I've heard Namenda is good for dementia and may be what she needs to help her understand that people need to change her diapers and take off her clothes to get her ready for bed. Every day she thinks she's being attacked and violated when she's toileted or put to bed.
She doesn't have a UTI but it seems to be sundowners because the anxiety gets worse at night. Thanks for your support and if you have any other suggestions and comments, please write.
megan

I have been on here for about a year..one of my biggest issues was the effect the medications had on dad. After a few months they leveled off and he's more comfortable.
I understand that they vary from patient to patient, but it's worth trying for at least 6 months. Show the brother my post.
I did not agree, but I was the one appointed to care for dad. Now, after all this time, I see the point.
2 neurologists have insisted that I tolerate the behavior and give the meds a chance that 6 months is not considered long term..but it's more like 2 years.
2 months ago we cut back on his Zyprexa, an anti-psychotic but he is on the highest recommended namenda an aricept respectively.
The medications, taken as directed do work...I'll admit occasionally I have to add .5mg of zyprexa for delusions and .5 of adavan for anxiety.
He isn't going to get better. I just manage.

Allow me to clarify something with the life long suffering of psychosis.
This doesnt mean shes running around having uncontrollable outbursts all her life, with my MIL, for me what I saw was OCD like behaviors that were mild to moderate.
An anger outburst from her might start fairly quiet and build up to explosive, slamming doors, muttering under her breath, hiding in her room so that no one saw what was happening, it varied but having experience with this type of thing earlier in life sent up a red flag for me while her family (my husband in particular) had no clue, to him this was and really still is "normal" to him.
I mean really if this is the only experience he had with his own mom how can he possibly say its wrong knowaddimean?
I brought it to his attention one day after I witnessed a particular episode with her that was angry but really scarily quiet.
I knew right then there was something amiss with her. Hunny on the other hand was certifiable he wouldnt hear his mother was suffering "mentally", 22 years later diagnosis in hand he realizes this was an over sight on his part and nothing like he imagined mental illness would be like. DH family, religious to a fault still believes even with the diagnosis that she is and was "normal"
Ok so I can pin about half them down as having some form of this disease so why should they admit to this right?
You see hun Psychosis doesnt mean that what you see right now is what you should have been seeing all along. The symptoms could have been mild and overlooked very easily.
So think back over the years and see if anything hits you strange like an outburst of hers that could have been a little over the top, compulsive behaviors like something needing to be in one place and one place only, that she would get mad at it being misplaced or moved by someone, cleanliness (or not) a little over the top, being more comfortable in the home/not enjoying going out or being around others, controlling others, it could be an indication that she had psychosis to begin with and is why she is behaving like this.
This is just an outline she may not be a sufferer but its here for you to think about and/or dismiss.

Megan welcome in
This sounds like my MIL what meds is she on?
She could have an infection, UTI, dehydration or her meds arent working anymore or never have worked properly. Start with the most common first Infection or dehydration.
If its none of these....
The hitting and scratching is a type of release for them if you have ever heard of a person that hurts themselves they describe it as a release of sorts it helps "calm" them down or feels good to them.
Please have them do a Psych evaluation on her, this sounds like she is suffering from Psychosis.
Whether she has had life long struggles or not with this only you would know, if this is recent it could be produced by the worsening dementia. My MIL is a life long sufferer unfortunately.
I would have a sit down with your brother since I can tell you my MIL was fully aware she was uncontrollable with these outbursts and paranoid delusions which was FRIGHTENING to her.
To allow her to go untreated is unconscionable FOR HER she is the one suffering brother is "lucky" he doesnt live in her "skin" so he cant possibly know what this feels like you understand what Im saying?
Im not angered so dont get me wrong Im just being blunt you have to find your own way to communicate this to him so he understands whats at sake....your mothers sanity
My MIL apologized profusely to me for what she put me through during these Psychotic breaks so I know she was aware, you have got to find a way to convey this to your brother so he understands not medicating her is far worse than anything he could imagine.
I myself went through a period of fear with medications especially Psychotropic class meds but once I did put her on that class the changes in her were dramatically improved.
I hope you can find a way to get through to him, for her sanity as well as her peace is at stake.
Contact the Medical Social worker if you find you cant get through to him they may be able to point you in a direction so that you can become your moms sole DPOA.
That is the other question I have, you say you hold joint POA with your brother, you are in California as I am, POA and DPOA are 2 different things POA is for financial DPOA is for medical if you hold her DPOA then your hands are not tied and you can make decisions for her medical needs.

First, if your Mom's agitation is a recent thing, please have her tested for a UTI (urinary tract infection). These are VERY common and produce cognitive and behavioral changes that are mind-boggling if you have never witnessed this before!

If, after testing for UTI, there is no apparent cause for her symptoms, speak with her physician about possible medications. Some are very mild; others are drool-city. The best course of action is the LEAST amount of pharma-treatment possible.

The symptoms you describe sound very much like sundowning - a strange condition where patients become agitated toward late afternoon and evening. Increasing the amount of light helps. Some facilities have strong lighting that replicates sunlight to help their patients with sundowning symptoms.

I would be remiss if I did not ask about her care. Despite an institution's reputation, there is ALWAYS the possibility that a patient is NOT being treated well or is being abused by someone. Popping in to visit at odd times on ALL shifts is imperative to ascertain if there is an employee who may not be treating a patient professionally and with respect. Because our loved ones often cannot remember exactly or express themselves to report accurately, they are easy prey for those who might do them harm. Even when a patient cannot report something bad happening to them or remember the incidents, they may have a very negative reaction to certain aides, nurses, etc. Chances are, this is NOT the caase, but please do not dismiss the possibility.

There are also camera devices that can be placed in a patient's room to record what goes on there when advocates and family members are not around.


Good luck and many blessings to you for watching out for you mom so closely.

The meds do work & if not,try another..........

Has the cause of her dementia been diagnosed? Does your family have strong religious beliefs against such medication that were shared by your Mother before the onset of her dementia?

The hitting and scratching you mention might not be helped by dementia meds, then they might. Sounds like anti depression or anti anxiety meds may also be considered.

POA may not be enough here. In my state (VA) there is a "general power of attorney" having a clause at the end stating that it will endure in case of disability. Unless that clause exists, POA might vanish if the LO is considered disabled in a mental capacity.

In many states a POA does not continue for a mentally disabled person. We have members from your state who might clarify that, or you might need an elder care attorney.

It is also possible (especially if this is a severe and recent onset of behavior) that she is suffering from an infection. UTIs are the first suspect, pneumonia is next. Don't expect our elders to respond to infections the same way younger people do. Another possibility to look into is any change made to her meds recently. My Mom was highly excitable when given an particular allergy med.

AND absolutely, consult her doctor.

Some people are against meds, some are for.
Me, I am for it. Above all, speak to her Doctor.