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My 82 yo mother with CHF and dementia was sent from hospital to nursing home for rehab after having pneumonia in December. Due to her declining health and mental state we decided it was necessary for her to stay in the memory care unit of the facility.


Since she doesn’t have any assets we applied for Medicaid coverage once her 21 days of Medicare coverage were over. She has now been moved to a much smaller shared room and is in the memory care area of the facility.


Since this change her health has declined, she is not helped into clean clothes and is left to lay in the bed all day. Is this normal care? I feel like it borders on neglect but am not sure if I am just expecting too much.


Would love to know what others have experienced with a loved one on Medicaid in a skilled nursing home. Thanks in advance.

Kathycan - oo dear, let me just let the red mist pass...

Right. Compare and contrast:

a) Would you like me to help you get changed, Mrs Smith?

and

b) It's time to get changed, Mrs Smith. Here are your things, let me give you a hand with that...


Your mother has vascular dementia. It is possible, if not likely, that certain key functions like initiative are now absent. She may also be experiencing depression and fatigue. If she is a given a choice between doing something and not doing it, she will opt for not; but this is not because she objects to it, it is because she is unable to get started.

To use that as an excuse for not supporting her in standard Activities of Daily Living such as personal care and attending meals is... unforgivable.

A person with dementia should not be forced to bathe, to change her clothes, to eat or drink, absolutely. But a person with this kind of dementia NEEDS to be prompted, otherwise she cannot do those things; and the people looking after her need to be trained in how to do it correctly.

There is something especially vile about using her right to autonomy as a mask for inadequate care.

If you go to your State or County website, you should be able to find out what the legal minimum care standards are and how to raise your concerns. I don't mean take this straight to the regulator! - there should be guidance about how to report a problem and follow it up constructively.

And don't be too humble about your expectations. You can't ask the taxpayer to fund ocean views, silver service and private suites, no; but surely everyone expects vulnerable elders' basic needs to be met.
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Reply to Countrymouse
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NO that is not normal care in a NH, with or without Medicaid. As already posted the staff doesn’t know if a resident is private pay or not...only the accounting department knows. Have you had a care conference with the doctor, nurse and social worker yet? Is she sick? Is your Mom physically able to get up, washed up and dressed with assistance? No one at Moms NH is left in bed unless they are very very ill. Otherwise they are up, dressed and at meals, even if they have to be fed. Are you able to visit her and track down the nurse manager or doctor?

Also, Double rooms are most common...at Moms they keep the couple of private rooms available for sick residents who must be quarantined for some reason, or to give families some privacy near end of life. Try not to get too hung up on the shared room, it’s usually not a bad thing.
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Reply to rocketjcat
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My mother was in a nursing home, skilled care, for nearly four years. In this time she went from private pay, using her LTC insurance, to Medicaid. There was no difference in her care no matter which way the facility was being paid. The staff didn’t know or care which patients paid which way. My mother was always in a shared room but we never an a roommate issue. She was helped from bed into wheelchair daily, clothing changed, fed, and kept clean. Your mom shouldn’t be in bed unless physically sick. She needs the stimulation of being up and about. Time for a meeting with whoever is in charge. It’s your right to request a care meeting at anytime, you’re her advocate now
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Reply to Daughterof1930
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shad250 Jan 18, 2019
Just because a care meeting is requested does not mean one will happen.
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You shouldn't have to accept abysmal care whether you are rich or poor, it this place doesn't address your concerns then you might want to find a better facility that also accepts medicaid.
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Reply to cwillie
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On a single note I would not complain about the shared room if the roommate is decent. My grandmother had a terrible one. Hopefully your mother is not experiencing that issue. There can be some difficult issues that arise in that event.
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Reply to Riverdale
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Really Barb, if they are incompetent they can refuse and cannot be forced.

Actually Medicare pays 50% from 21 days to 100. Supplimentals may pick up some of the other 50% if not the patient does.

I would say something to the DON. I found that staff will say "do you want to get up or dressed" So of course a Dementia patient is going to say no. They just need to say it differently like "time to get up and get dressed" if the patient refuses then " oh come on Mrs. M don't you want to fell all clean and smelly good" If after trying a couple of different approaches she wants to be left alone, not much they can do.
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againx100 Jan 17, 2019
You're spot on with how to talk to patients to perhaps get a bit of cooperation. They're not trying very hard to get the person motivated to give a yes answer or at least not a firm no.

I am appalled at the description of how the care has changed from rehab to LTC. Totally inexcusable, IMHO.

Kathy, be firm, express your concerns and your desires and hopefully they will be responsive.

Will your mom respond to you, when you say something like, OK mom, time to change your clothes. Or time to go down to the dining hall? Maybe you'll have some time to try tomorrow and see if she'll cooperate. The staff should have some tricks up their sleeves and be able to get more cooperation from your mom, maybe even better than you can do yourself. Good luck!
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No, this is not normal care because your mother is now on Medicaid. Make an appointment to speak with the administrator of the nursing home, then let them know you plan to contact the Department of Aging for your state if things don't improve. The quality of Long-term care is not contingent on whether or not your mother is a Medicaid patient or private pay. Those practices are against the law and patients rights!
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Reply to WGDPropInvt
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Your Mom should get the same care she got prior.
I understand the shared room.
And if she was in Memory Care prior to Medicaid she is still in Memory Care so that is not a change.
Your Mom will decline but that is not a reason for them not to get her up nor an excuse to not put clean clothes on her.
You should discuss this with the staff and make sure the Director is aware.
I would talk to them as well as put your concerns (notice I did not say complaint...yet) in writing.
If the neglect continues then you can file a complaint formally.
Before you file a complaint check with your State and find out what the minimum code, regulations are for Nursing Homes, Memory Care, what ever they call them. Then armed with that information you can list the items they are negligent in. Spell these out in a complaint to the facility. If you wanted to be nice give them time to respond then send a letter to the state regulatory agency.
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Reply to Grandma1954
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Thanks everyone. Yes, I’m not too concerned over the shared room and feel like it might actually be good for my mom to have a roomie to talk to.
To answer some of your questions, she is sick in that she has vascular dementia and needs to use a walker to walk. She is weak from recovering from pneumonia and they cut off her physical therapy when her 21 Medicare days ran out. But no, she is not so sick that she should be laying in bed in dirty clothes all day. So far she has worn the same clothes for 3 days that I know of. (I live 2 hours away but my SIL is local and visits almost daily).
Apparently the staff is asking her if she wants to change clothes or go to the dining room to eat and she tells them she doesn’t want to. Not in an argumentative way, just like nah, not today.
She has become increasingly lazy and wanting to be waited on hand and foot since being in NH. Narcissism coming out I guess. We have told the staff to tell her she is changing clothes now or going to dining room because it is just not good for her to lay in bed day after day and there is also some depression involved with her attitude. I just feel like it is the staffs responsibility to care for her as with dementia she is unable to make proper decisions for her own care.
I am going to request a meeting with the care team when I go in tomorrow.
It just really seems like the care she is receiving has changed considerably since she moved from the rehab side of the facility to long term care.
Thanks again everyone you guys are true earth angels !
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Reply to Kathycan313
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rocketjcat Jan 17, 2019
So was she more receptive to changing clothes and getting up in rehab? Or did they just tell her what’s going to happen then do it? She may be “competent” enough to refuse to get up, but I’ll tell you it wouldn’t be tolerated for very long at my Moms without some type of intervention. If the family wants their LO up dressed and at meals etc. and there’s no physical reason not to, then it’s going to happen. These people are trained to convince and cajole and make it happen. And if they can’t, then up the nursing ladder it goes.
Usually when there’s a rehab to NH transfer, a couple of weeks of PT is ordered to get a baseline. So I would try to get her back into a couple of weeks of PT...that will get her bum out of bed.
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We are scheduled to have a care meeting next week and I did talk to the nurse working today. It seems that there is mostly a communication problem within the staff but they know we are not happy with the lack of care. I appreciate all your comments and advice are very helpful and give me a standard to know what is acceptable care. This is unknown territory for me and many others and I can’t thank you enough for your insight. Blessings to all.
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Reply to Kathycan313
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rocketjcat Jan 18, 2019
So when you went today, how was Mom? And what did you observe regarding the other residents? Out of bed, dressed, at activities, in the DR or LR? Or was everyone in their room, undressed? I guess what I’m getting at, is what is the norm at this facility? What was the communication problem they cited?

Regarding staffing, what is the CNA to resident ratio on her floor? Don’t take their word for it...use observation to see for yourself. Moms floor ratio is usually 4 CNAs to 38 residents, (a good day there’s 5, only 3 is chaos) and time to get them up, dressed and to meals. And many require hoyers. So don’t let them try to smoke you that there no time to try to encourage your Mom to participate in her care.
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