I had to put my mom into a dementia assisted living facility. She is now very angry and aggressive toward my sister and me when we go to visit her. She never was like this when she was at home and I cared for her but now she tells me how much she hates me and never wants to see me again for putting her this "hell hole" as she calls it! The staff during the day can seem to deflete this behavior but the night staff just puts her in her room when she starts yelling so by the time I get there to visit she is in such a state I can't do anything to calm her down except leave. Her DR has put her on Seroquel but it isn't doesn't seem to be doing anything.
I know this is the disease and not my mom yelling at me but I just feel so bad that I can't make her feel safe and calm at where she is.
Any suggestions?
Reminds me of the time when I was a brand new doctor in a brand new town and this other doc, who shares your point of view convinced me I needed to take a young patient off all his meds, because everyone knows those meds cause dysphoria and he would be all better without them in the rehab facility. I did it on his advice and regret it to this day...Between the other doc's dogmatism and my naivety, we harmed that patient, which is the one thing you are not supposed to do. Within a day of being fully off meds he was psychotic, flapping his hands, and buzzing like a bee, unable to participate in the rehab, and then that rehab was not terribly interested in taking any of my patients again after that either.
All meds can have side effects. Those that do, have them for some people and not others. All meds on the market on on the market because they have been shown to be helpful significantly more than harmful to at least some group of people. Maybe I should let my current rehab patient with schizoaffective disorder just go back to screaming and trying to climb out of bed because they think we are making them drink blood instead of water, and try vitamins and a good diet (which will be thrown across the room for fear they are deadly poison)? Would that be kindness?? And because of this underlying disorder, the low dose SSRI we normally use for people who have PTSD made her worse instead of better, maybe I should never help anyone else with that class of drug again, instead of just stopping it in her case?? Might that not be cruel to people who need to get their serotonin levels back up to where they can feel OK and function again?
Drugs and side effects are a hot issue for me, both ways. I see people hurt by side effects being denied or ignored, and I also see people whose lives could be a lot better if they would try the medications that would help with their specific psychological or physical problem. I have a child who is in extreme pain from high stomach acid, making them arch their back and clench their teeth, and the parent does not want to give anything that is not "natural." I suppose we will try some aloe vera juice, and it might help a little, but we could have nearly complete relief within hours or days if we could use what we usually do.
Just saying that THOUGHTFUL, careful, intelligent use of medication can do a world of good and being against all meds all the time makes very very little sense and leads to needless suffering just as much as any of the side effects you mention.
Anyone with an aging parent should read it !
I will not bash nursing facilities, docs, or meds. Modern medication has done amazing things for many people I know, including myself and my mother. All meds are not bad, so I am leery of anybody who says to pitch it all out the window.
That may do more harm than good.
I am also leery about advice to just move mom every time she isn't happy. You might find that turns into a chase for the pot of gold at the end of the rainbow. It's just not there. Happy comes from perceptions and beliefs. When you have a degenerative brain disease your perception, beliefs, and ability to comprehend is severely impaired. Different dementias progress different ways. Nothing may ever get mom happy as compared to when she was younger and didn't have a dementia. That may not be a reasonable goal. This is something to discuss with the doctor and your social worker.
Are all elderly people overmedicated? I think that's an opinion, not a fact. When an elderly person goes into care, the doctors have to treat certain things with meds because the body can't do it independently any more. They have to pick their battles. It's not easy and I take my hat off to the people who treat the elderly.
Sometimes sedatives are completely in order. When a person's behavior is so violent they are a danger to themselves & their caregivers, it's either that or being strapped down. If I am like that, please drug my old butt up to the hilt! I don't want to spend my days raging and raving, screaming, clawing, scratching, spitting, & hitting. Is that shocking to see, experience, and deal with? Absolutely. But there are no magic answers with dementia. There is no one size fits all answer. There are no guarantees, no promises, no warranties. We just do the best we can.
If you have concerns in between conferences, then there should be a contact you can talk to. If not the social worker, then someone who is the designated person for family to speak to. Use this person to help figure out what's going on.
Sometimes Sundowning makes people become extremely disturbed, and it can start early in the afternoon. Nobody knows what it is exactly, but it is AWFUL to see. This might be a cause of your mom's behaviors.
It could be related to meds.
It could be a urinary tract infection nobody has found.
It could be pain.
It could be the dementia making physical changes in her brain.
It could be a nice combo platter of all of the above.
The only thing you can do is work with her doctor and the people in charge of her care to understand how to find the cause and what to do about it.
Ask the people who work there what the protocol is for someone in your mom's shape who may become disruptive, loud, angry, etc. I would want to know why they put her in her room, and what else they may have tried before that.
I mean they can't have somebody out in the middle of the common area screaming and swearing and being agitated. It gets others agitated and then there is a great big problem. Putting her in her room might be one of the ways they try to get upset people to settle. Ask how often she's checked on when that happens. I would think they would have a protocol for the aid workers to follow.
It's like trying to figure out what works with an upset toddler. Maybe they need less stimulation to settle. Maybe they need a nap, a change, a snack, or to just work it out of their system. It's entirely trial & error with human beings who aren't machines that follow a strict cause & effect diagram. Especially when brain change is afoot.
ALso, look at what you exect for care levels. If she is in a group setting in a NH, they are likly not staffed for a lot of one on one time. If you want her to have more individualized attention, maybe you need to look for smaller scale congretate housing. There are lots of choices out there these days and it boils down to what she can afford.