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My mother is in an Assisted Living/Memory Care home. The Dr says she has early Dementia. Her legs no longer work so she is in a wheelchair. We can't take care of her at home. Some days, yes, she is confused and tells some tall tales that I can tell are not true. Most days she is very "with it". Once in awhile, on those good days, she will tell me how the staff doesn't respond to her calls during the night, how some days they gather in groups away from the living area where most people are, laughing and not paying attention. She says she has had to call out to them when a fellow resident is trying to get up and is a fall risk. Actually, I have seen this happen a couple of times. When I try to discuss my concerns w/the resident nurse, I am Always told that this is Alzheimer's and she doesn't really experience these things. Makes me angry! I know my Mother. What should I do next? Thanks in advance for any answers! Karen in Texas

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I live in an upscale assisted living facility with my husband. I do not have dementia as he does. PLEASE believe your loved one! I have seen all of this and worse. If you don’t live there 24/7, you have no idea what goes on. Staff and administrators will tell you anything to shut you up. You can report to them all day long, but what you get is excuses, denials, and empty promises. You need to report to the state officials first. Even The Ombudsman is useless because they have no authority. And many times they are buddy buddy with the administration. Get yourself a good lawyer. Document everything. Put a camera in the room. Talk to the other residents when caregivers are not around. SPEND MORE TIME there. We have a crisis in this country. Yours is. It the only facility where both subtle and blatant abuse is occurring. It needs to be exposed. Talk to your state senator. Encourage him/her to push for legislation that will protect residents in these facilities. If a facility decides that you are being too vocal in your complaining, they can just send you a letter saying , “We can no longer meet the needs of your loved one. “. They will tell you you have 60 days to vacate. They do not have to give any reason for their decision, but can just make up anything they want for the record. If you can afford it, get your loved one out of there and bring them home. Hire private caregivers to help you. Put cameras in the home. Even if you have done a background check, if the person has never been caught and prosecuted, you don’t know what they might have done. We have a broken system in our country, and it needs to be fixed! These places are businesses, and their top priority is making money. PLEASE help all of us!
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rovana Apr 2019
Not sure why anybody thinks it remarkable that making money is the top American priority.  Free market capitalism is the name of our game.  And most voters seem to go along with that.   For some reason they don't seem to grasp that times have changed and the unpaid female labor that traditionally made our system look like it worked is not there as it once was.   What's sauce for the goose is sauce for the gander and high time!  And if people pay decent wages they can get good workers, but try to do it cheap as possible and don't expect filet mignon at hamburger prices.
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I would send a letter to the administrator with specific occurrences that you have witnessed, include the information from mom and be as specific as possible with information, generalizations will be ignored. Approach this with an attitude of belief that they didn't know that this was happening and you are bringing it to their attention, as you know that they would never allow this neglect knowingly, be sure and name the people that have been told by you and how they dealt with it. Be specific and name names when able, keep your feelings out of it, don't say it made me feel, say this is exactly what took place when I approached nurse xyz, based on her response I decided to notify you of the situations that I have personally seen and have been personally told about. We all know you would never allow this type of treatment to the residents. This type of approach usually hits their pride and I have found it to be more effective then other approaches. If you hand deliver the letter, ask whomever you give it to to sign your copy and print their name with date and time, so you know who to say signed for delivery. Nothing more frustrating than I never received that letter, can you resend.

Another poster said that they may kick your mom out and that is true, so be prepared to have another place willing to take her and get her records as soon as you see there is a problem, they would stoop to falsifying the records.

In the mean time, spend as much time as possible during the problem times, ask for help when you see groups of employees and write down their names so they can see you are taking notes.

Send a letter to the Department of Health Services and ask them how you can get help addressing the neglect of these residents. Explain that you have approached the proper line of command as you understand it and they deny what you have personally seen, blaming the residents medical condition on the neglect.

Please let us know what happens.
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nannybrister Apr 2019
Thanks for all of your info! I like the plan of writing the letter. I will definitely get back w/all of you when I get results. Take care!!
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My mother has been in three assisted living places. All are very nice, but yes there are some bad apples, negligant, lazy, etc., ones. Usually staff turnover was high as good management got rid of the drift wood or they left because they couldn't or wouldn't make the change.
Always listen to your mother! You can tell what is real and not real. With dementia comes hallucinations, etc. Memory of past tramaus, fears, etc., can surface & connect with their present physical & emotional world.
For a while increase your visits. Make them short (couple hours) at different days and different times. Probably weekly.
So, you may visit on a Monday one week then Tuesday next week. Coordinate you visits with what activities they have going on. Be a part of that. Switch up every month where you may visit on one, then return next day at an earlier hour. Staff does put their best foot forward and play the PR thing to make it appear a great environment is present or over play act by being extra loving and nice to mother, etc.
Be very observant of things and other residents around the place, Ask staff questions like how is mother doing. Does she need anything. Of course you will ask mother, but by asking staff you will see what they know.
We always make notice of mother's fellow residents and we say hello to them and take a couple of minutes visit with them. Not all of them just ones who may make eye contact or wave to us or especially the quiet ones who look at you. Main thing is interact with them, give them attention and see where they are. We ask if they need anything...do they need water, etc. We may ask them how they are doing. Most time they tell us. If resident responds and needs something else that we can't do we ask a nurse, or go to nurse's station and ask for the resident. This pulls the staff's attention to them.
After a while the residents would willfully interact with us each time we came to visit. Amazing what they would tell us about the staff, persons, things, or just their lives....without us asking. We never ask them about the staff.
In our state it's law or mandatory, resident's loved ones have access to them 24 / 7. That is, if you wanted to come at 2:00am to check on mother for any reason, you should be able to do so. Additional, for review there should be a binder or some folder available to the families, visitors (public) which has record documents of outstanding complaints, infractions, violations, inspection results, etc. Read through this. You can get a good snap shot of core problems the place is facing or has faced. If staff happens to see you reading it...well, it does have an positive affect.
Most importantly, your relationship with the staff is vital. By getting to know them you will get a picture assessment of how they function professionally. Every place will have a difficulties even when the staff is doing their best. We have found that slack manangement is obvious for bad hiring and attitude of the staff. But most places with good personal management it still slacks of solid in house training / experience, which is core. They need to be given things to help them to be successful. Too many staff bring bad habits & experiences with them from other places they have worked. Our goal is to be what ever we can to contribute to their success in caring for our mother, in turn, to the rest of the residents. It's one big family! Having a relationship with staff they will accept our suggestions in how to care for mother and we can become a strength for them. Even with mother's dementia alzheimers her personality still comes through. Helping staff to get to know her is key. Another final key...getting to know the staff, you will come to realize ones who really care and those who it's nothing but a job. One thing is priority with us. We do not tolerate incompitance, rudeness, any abuse (verbal or of any kind), harsness, anything that intrudes or violate there will, dignity, physical person.
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nannybrister Apr 2019
Great idea about asking staff if she needs anything. Like you, my sis and I have gotten to know several of the residents. I make it a point to give them a hug coming and going, ask how they are. Unfortunately, some are getting in worse mental condition just since the 3 mo. Mama has been there. They rarely talk to each other. (except the one lady who cusses everyone out. :) )

Also, like you, we try to get to know the CNA's and compliment them, tell them how much our mom loves them. They seem to love her back. Maybe getting on their "good side" helps? Treating them like family, not slaves.

I am going to read your post over and over. Very well written and informative. Thanks, LuvingSon!!

BTW, have you ever gone in the night after bed to check on your loved one? I would love to see what the evening looks like for all of the precious people.
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Nannybrister, you mentioned that the NH asked you not to visit after 4 p.m. because of sundowners. I have visited several memory care centers in anticipation of a placement for my mom. Almost exclusively they allow and encourage visits at any point in the day or night. I was actually concerned about this policy because of security concerns and possible disruption during the night. But they allow it to accommodate family members who may work odd hours and can't visit during "normal business hours." So the sundowner explanation sounds shaky to me.
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elaineSC Apr 2019
I agree about it sounding shaky since the sundowning can start as early as 6:30 p.m. and I was told the polar opposite for my mother on visitation. They said sometimes a family member visiting during that time can help offset some of the agitation. I was told to come anytime. My mother just passed in December and before that, she would be yelling out a lot and sometimes they told me an anti-anxiety med did not even help help her.
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If you witness this happening, go to the Charge Nurse and ask why her staff is not responding to a resident’s needs.
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Who to believe? With early dementia the truth is going to be somewhere in the middle, take everything she says with a grain of salt but watch for real evidence that you can act on. And in case you aren't aware, most AL's only have a sketeton staff in the middle of the night so they aren't likely able to keep on top of things if more than one resident need help at the same time.
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The other thing I would add here, not necessarily addressing this particular issue, is if you see drastic personality changes, insist on urinary testing. It is one of the most common reasons that facility patients appear to be out of their head. And for people diagnosed with dementia, my bet would be it is the last thing facilities test for because it's easier to just blame the diagnosis. Always rule out bladder infection. Don't assume everything is the dementia.
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I live in a health care facility with an extremely sharp mind but I can't walk due to a spinal injury. I see it all. There are far too few staff and it does take a long time to get responses so that part is most likely true. But on the other side, if there are memory problems, you can expect some tales to be "phony". It works both ways and there is no real way of telling short of hiding under the bed and watching.
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nannybrister Apr 2019
I'm laughing just picturing myself w/my bad knees getting under a bed! :)
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You answered your own question. Your mother is in early dementia, and you know when she is "with it." You've witnessed the staff ignoring patients and defending themselves by calling their accusers impossible to believe. Find a better place!
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I think what your mother is describing sounds perfectly believable. And you've seen it yourself.

I also, on the one hand, think "what about it?" There is always going to be a time lag before calls get answered. There is nothing especially wrong with staff interacting with each other, though if I were their line manager I would probably want to "have a word," as they say, about how.

But on the other hand what *would* worry me, a lot, is that the resident nurse is not listening. And is brushing absolutely everything under the rug of 'your mother's away with the fairies.'

So who is next in the chain of command? Up you go!
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