Nursing home care of patient with dementia. What do I do?


My mother has been in a home for 15 months. I know she has had periods of combativeness, especially with a UTI, she also has times when she refuses to get out of bed. However in last few weeks, she’s been, at least from what I see, meeker and milder, hasn't yelled at me or been nasty, been very sleepy and stays in bed a lot. The problem is, she isn’t getting properly taken care of and when I say anything, they say well she gets combative. I was there at lunch today, she was in bed eating lunch, very docile, I put a towel across her chest to keep her food of off her, she was finishing cake when I left at 2 pm. I went back at 5:45 pm to take clothes out and she was in same position, dinner tray on table, covered up. The food wasn’t cut up or anything, again she was still very docile. When I inquired, I got the speel that she refused care today, the aide said she told her to get out when she took her tray in, could she not have cut up food and left it? The plan, just went on and on about how she gets nasty, etc. has no one changed her, pottied her? The supervisor came in and gave me a bunch of crap about how she was busy, didn’t know there was a problem, and again how she can get nasty. The nurse and aide complained how they had ten feeders on unit, is that my mother's faul? She feeds herself just can’t cut food. I then checked her adult diaper, she told me she was dry, but I rolled her, OMG! The diaper was beyond soaked, the bed pad wet, I changed her and they came in and I told them I took care of it, I then held up her diaper and screamed, would any one of you three want your mother taken care of this way? I took the diaper with me and plan on meeting with administrator. I then screamed at them, she’s in a home because she’s old and has dementia, dementia pts sometimes get confused and angry and combative. Do they not teach these dumb a$$es how to manage patients? My mother usually does well when they compliment her hair or nail, clothing, she loves that and usually will then cooperate. What do I do and how to handle them chalking no care up to her behavior. I have now asked them to call me when’s she’s combative but now I’m afraid they’ll provoke her to get that way just to spite me and say we told you so. So upset that on way home I bought a voice activated recorder to hide in her room, any other thoughts?



OB, thank you for the update. We all reach a breaking point. I sure have; yelling, crying, booting dirty diapers across the floor when I lose it. Not a real proud moment. The important thing is that this is not the norm for you (or for me).

My mom was allowed to eat in her room when she was on the “regular floor”. Her food was basically ground up. When she entered the Alzheimer’s Unit, all residents were made to eat in the dining room where 2 staff members were on constant watch.

I hope you can clear the air with your Care Conference because this is truly the way to go. Skilled facilities operate on documentation and paperwork. Good ,ick and let us know what happens.
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Reply to Ahmijoy

She feeds herself it needs the meat cut. I have a meeting with director and administrator, the director was as outraged as I and i did tell her how I was upset and yelling, she responded with, I know you are never like that with staff. I actually treat them kinda nicely, always bringing treats and never give them a hard time. Anytime I have issue I do go to charge but I really try not to complain too much.
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Reply to Obnurse62

In Moms NH only people who can feed themselves are allowed to eat in their rooms. It’s very few and they are only the highly functioning. Even then it’s not really encouraged. The residents who need to be fed are in the dining room with aids assigned to feed them. If someone is really sick and has to stay in bed a nurse will feed them in the room but it’s a huge PITA for them to devote that time.
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Reply to rocketjcat

I think you need to take a deep breath and chill out, at least in front of the staff - screaming at someone will only cause more animosity, which is the opposite of what you want. Apologizing to the person who received the brunt of your anger might go against the grain but it is the right thing to do. A care plan meeting with the DON and administrator is an excellent idea.

Front line staff are stretched thin and I'm surprised your mother was permitted to eat in her room at all if she requires assistance, in the dining room she would have more eyes on her. From my observations at my mother's nursing home even in the dining room people are not asked more than twice if they need/want help and the only residents who get special attention are those who are completely dependent, are losing weight or repeatedly fail to eat. Every mouthful of fluid and food is documented so you should be able to see how often your mother isn't eating and if her weight is stable or not. You also might consider whether your mother needs to have her meals modified in the kitchen rather than asking for help after it is served, you should have the option for her plate to be bite sized or even minced if she has difficulty - the advantage of this is it would be charted as part of her care plan.

As for the diaper issue, is this something that you encounter often and is your mother's skin breaking down due to it? If she is changed and comfortable the majority of the time then you may have to forgive occasional lapses, people are changed/toileted on a schedule and may have to wait their turn, especially if they themselves don't have the ability to ask for help. Once again all of this should be charted and you should have the ability to see those charts. Remember to be realistic in your expectations, even the best facilities can not offer one on one personalized care.

To address you mom's aggressive behaviour - just because she is a sweetie with you doesn't mean she isn't vile to staff, I can't think of many other occupations where people are expected to accept verbal and physical abuse with a smile. Once bitten twice shy is only human nature, it will take more than a few weeks for staff to stop being wary around someone who has been aggressive in the past. Those incidents of aggression should be charted as well, although sadly too often staff don't bother because they feel that anything less than a beating isn't reportable. I have a lot of sympathy for the people who must interact intimately with people who might, without any warning or cause, lash out.
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Reply to cwillie

Yikes. This is a messy situation, isn't it? You absolutely have to be firm and consistent in advocating for your mother, who can't advocate for herself. I don't at all blame you for becoming angry in the situation you describe. I would be angry, too. In fact I'm feeling angry right now on your mother's behalf.

But somehow you need to advocate in an effective way, and that may mean suppressing your anger or at least expressing it in non-insulting ways.

Maybe the staff in your mother's facility are mostly dumb asses. It's possible. But they could also be genuinely overwhelmed and understaffed. That is no excuse to neglect a difficult patient, but it may be a frustrating reality they face. Maybe 10 feeders on a unit is too many, and they do need extra help. I'd sympathize with that. But they still have to figure a way to provide care to your mother.

Maybe they genuinely fear your mother's outbursts, even if she hasn't had one recently. They still have to figure out ways to care for her.

The staff may not have had any training to handle dementia behaviors. Sad to say, but that may be true.

What to do now? I think you need a care conference. If one is not scheduled soon, ask for one. First thing at that meeting you need to apologize for losing your temper. Explain that you get very emotional seeing your mother not having a dinner she can eat, or sitting in very saturated depends. You know she has been combative in the past and she may be one of their most difficult patients. You'd like to hear their plan for caring for her in spite of her dementia, and you'd like to know how you can support that plan.

When the nurse gives the report at that meeting, you might consider asking her if it would advisable to have Mom seen by a geriatric psychiatrist to consider calming medications.
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Reply to jeannegibbs

Please don’t take this the wrong way, but because you have lost your cool with the staff, your mother may now be “marked”. I’m afraid that without your even saying anything, the staff will now know you consider them “dumb asses”. If they or housekeeping find the recorder, that will seal the deal. You had every reason to be furious. You have to be your mother’s advocate and had my own mother been treated that way in her facility, I would have been angry as well. However, if I ever had a complaint or question that one of the aides couldn’t answer, I went to the charge nurse, the Director of Nursing, and only once to administration. I often got results from the charge nurse. I found the Administrators ( there were about 4 of them during the 3 years my mom was there) would try to mollify me, told me what I wanted to hear and then did absolutely nothing. Have you noticed this apparent neglect with her before? Have you said anything to the charge nurse? Have you been informed of any change in Mom’s meds that might cause her behavior to change? I’d get a call if they gave Mom an aspirin. If the facility has a separate Alzheimer’s unit, maybe Mom would do better there? The staff:patient ratio is lower and when residents have issues with being combative, they are more able to handle it.

You need to call a Care Conference meeting with all staff associated with your mother’s care. Document what you see as her neglect on paper. Dates, times, what you said and what they said. If an important staff member can’t be there, insist they be given the minutes of the meeting. When we had those, someone was always taking notes and those can be passed on. You need to go through channels to resolve issues.
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Reply to Ahmijoy