Is this normal nursing home care after moving to Medicaid?

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Is this normal nursing home care after moving to Medicaid?

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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.

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The room and it’s location will change because of Medicaid, BUT Quality of Care should NEVER decline because of the type of insurance coverage. I repeat quality if care should NEVER DECLINE. It sounds like this particular facility is not a good filt for her and I would definitely look for another one immediately. You should take your concerns to the director of nursing and to the administrator and changes in the quality of care should change ASAP. Neglect and abuse should be reported to the state department that regulates the care center. They are required to have this information posted.

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Does anyone have suggestions on questions I should ask in our meeting?
I know to ask about medication, daily routine but what specific questions would you guys with experience recommended?

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First, I would remind them that she came into their facility from rehab walking and participating, and now she’s not, so together you must work on determining why not and fix it. Let them understand that it’s your desire to have her up, dressed, and to the DR for meals daily, unless she’s physically ill, just like she was doing at rehab. Keep focused on your goal and ask for data that could help:
What are her vitals? BP/ pulse /temp
What are her meds? Ask to see their list.
Is she continent or have any urine/bowel issues?
What is her weight? You need a baseline.
What % is she eating and drinking at every meal?
What is the shower/hair wash schedule?
Is she walking? If not, that should trigger restart of PT.
Does she participate in any activities?

Many of these questions will come up in the general flow of conversation but some details may not, so it’s good to have a list.

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The move to a smaller room is normal for most facilities. The decline in care is also common but not acceptable. The staffing ratios are often higher on Rehab floors vs long term units. You have to make you voice heard. In my experience, the squeky wheel works. You can squek nicely though.

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Unfortunately, a majority of the skilled nursing facilities (SNF) are under staffed. It truly amounts to greed for the most part.

In turn, the patients do not receive the care they deserve and need. Any patient with cognitive issues, will suffer more, as they cannot advocate for themselves. Also, in SNF the caregivers do not know the patients well, so if they are told no, they take that as the last word. They don’t have the time to spend, to redirect or work with the patients with cognitive issues.

It’s imperative that family and friends get involved, and are diligent in advocating for the proper services that their loved one needs.

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Under Federal Law Medicaid residents should receive the same care as a private pay resident! Their rights are the same and the requirements for their care by staff are the same. No one should be able to tell the difference between a resident on Medicaid and a Private Pay resident by the quality of care!

It is common for a resident to be moved to a room (many times smaller) when they apply for Medicaid. Residents have to be in a vendor bed (Medicaid approved bed) before application to Medicaid can be made. However, there should not be a decline in the care the resident receives.

If you are seeing a decline in care talk to the nurse, if you don't get resolution talk to the Director of Nursing. If you still don't see a change contact your local Ombudsman Program. Ombudsman are Federally Mandated Advocates for resident in long-term care facilities. They can help with this and there is never a charge to the resident or family!

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Im actually having the exact same issue. Excepty dad is not on Medicaid yet but about to be. They have switched to smaller room and lays in bed all day. He is suppose to be there for rehab then coming home. I'm extremely upset and they never give me answers to my questions. Help please, this is terrible to witness. I call everyday and he just cries that he's gonna die there.

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I’m just so sick over all of this! When I went in to see mom on Friday she was in dirty clothes laying in bed it was 10 am. She had been served breakfast and said she had on clean clothes but sister in law said was same outfit from previous day. Mom doesn’t care to change into clean clothes and needs assistance and guidance.
Unfortunatly I live 2 hours from NH. Mom actually lived with me and husband and was visiting brother when she became ill, was hospitalized with pneumonia and finally ended up in NH for rehab. She has deteriorated so much we are not able to care for her at home now.
We had family meeting and everyone felt it was better for her to stay in Ohio instead of bringing her back to KY with me. She originally lived in Ohio and has family and friends there that can visit her where if she is with me it would just be me 99% of the time.
my sister in law has gone above and beyond in being moms daily advocate and is such a blessing. We are gathering notes and pictures and researching her rights so we will be prepared for our meeting next week.
I wish I were closer so I could be more of a presence but I can only do so much from long distance. My caregiver stress level is much different now but it’s a constant worry everyday. Thanks for all your concern and advice it is so appreciated. I’ll keep you posted on the outcome.

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Unfortunatly yes I have been on both sides of the bed so to speak as a RN, and as a rehab resident in a facility. In my experience, you first need to let the charge nurse know. Usually this is the nurse on duty for the floor your mom is on. if the situation remains the same after several attempts, make an appointment with the supervisior. be firm , calm and state the problem. if no change, look to move mom to another facility, and let the director know , they don t want to lose the medicare /medicad funds You kneed to stay on top of her care, be visible, and thank the staff when things are going well,don t just when there is a problem. God Bless

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I’m sorry for the pain and anxiety you are feeling. Just because a resident is receiving Medicaid is no justification for not receiving services. You should visit often and be unpredictable. You should document what you see and even take pictures. Your mother is there to receive care that you are not capable of giving. If the nursing home accepts Medicaid reimbursement they MUST provide services. I would say that having a shared room is normal. Every facility that accepts Medicaid does have a certain number of Medicaid beds. Sometimes people who have been private pay end up in Medicaid because their resources become exhausted.

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It is definitely neglect. My mom passed away last month after 3 years in a NH. She was in the memory unit the 2nd year and would not ring for help and fell several times. They had X-ray machine brought in each time or sent her to the er. I know she refused to ask for help so I didn't blame the NH faculty. She was bathed, but had to be talked into it since they cannot legally force them to bathe or shower. They got her up twice a day to go to the "common" room where other patients were gathered to talk, do puzzles, watch TV, etc. They tried to get her to join them there for her meals but, she didn't like to. I spent a lot of visits trying to get her to eat or just sitting in the common room visiting with here and others. They took care of her and even when she was transferred to the skilled nursing section with pneumonia, I would arrive to find the some of the memory unit staff visiting her, feeding her or just sitting with her. We were lucky. Speak up, raise some cain with the administrator.

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This is an unacceptable level of care and sadly, it does happen. You should go to the charge nurse and also the Ombudsman. For example, they told my late mother at the NH -- "Ma'am you're too well to stay here." Unfortunately THEY WERE VERY WRONG - DEAD WRONG as less than 48 hours later, she suffered a stroke there and died. Be careful with your LO -- SPEAK UP!

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It's neglect and you need to speak to someone start with the charged Nurse if nothing changes,try the Social Worker that represents her floor if that doesn't help go to the Administrator and Director of Nursing lastly call the State and report them. We need to be advocates for our loved ones in NH if they can't speak for themselves then it is up to us to see that they get the best care

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Yes you are so right! we need to speak up. we do not want to make trouble because we are afraid Living at home was no better they are supposed to be caregivere they were lazy ,from africa,Hati, Jamacia, or americans, most were not trained,or pretend to not speak english. They where on the phone, played games, and did not take care after their 12 hrs because "I dont get paid. It only gets.will worst, and that is what the feelings are among us for our loved ones in these places. We feel helpless . I c/o to the Social worker and the omnbudsman. I got no where. It is kinder to put them out of their misery, or pray they dont know whats going on

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Every Medicaid patient needs an advocate; even the full pay patients need an advocate. My daughter is a nurse who works nights, and when she gets off she goes to nursing home run by Baptists to check on her father (my ex who I have not seen in 20 years, very bitter divorce). His diagnosis is Lewy Body dementia, and he is wheelchair bound, but still feeds himself. She says she has to remind the staff every week to change sheets, give him a bath, etc. and he is full pay! He has enough funds to last maybe two more years. We all hope he doesn't live that long because things can get really bad on Medicaid. But we didn't think he would last as long as he already has, so who knows.

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I saw this kind of ugly care with my mother who just passed away in March of 2018. On a Saturday morning, all my mother wanted to do was go play Bingo. They did not help her get into her wheel chair. She fell. Her right arm was tore up so badly. The "short employed staff" called to tell me she fell and told me she was alright. I knew she wasn't. I hurried and got dressed and got to the Nursing Home. She was bent over at the dinner table in her wheel chair staring into space. I was horrified. I got her into her room, got her comfortable in her recliner, by 3 p.m. she could not stand on her own two feet again. I was afraid she had broken her artificial hip. I got her to the Emergency room. My mother passed away 5 days later. This facility is called Garden View in OFallon Missouri. It is one of the worst places I have ever seen. And my mother was at 2 other facilities as well. ALL were crap. The CNA's don't want to work or care of the elderly. YOU HAVE TO HAVE A PASSION TO CARE FOR THE PEOPLE WITH DEMENTIA. IF YOU DON'T..... GO FLIP BURGERS!!!!!

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Oh my goodness! I’m so sorry u had to go through that, how awful for you and ur mother! Thank you for sharing your experience.

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I'm sorry to hear about your mom's declining health. My dad also had CHF.
No, she should have the same care as someone paying full out of pocket price. If it's really bad contact an attorney. This is wrong!
Is it possible to move her to another nursing care place? Is it possible to have help at home?
My dad needed help at home in the daytime. Once he was in bed for the night he slept and didn't get up. I don't know how many brothers or sisters there are, but if possible, each could spend an hour or so per week. I went in every morning to see he got his medicine and help with breakfast. I was also there every night to help with getting ready for bed. I am the only child. I needed to have help for when I wasn't there. I hired a live in male. This worked for us.

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M brother is in a NH in the dementia unit. He is also wheelchair bound. I have gone to the NH to visit my brother at various times through the day and night to see what goes on.
They don't think he is competent to sign his name, but he is competent enough to refuse treatment. When we had a quarterly meeting I mandated that they shower, shave and put clean clothes on him. He went 2 weeks with out a shower!!!! I also demanded to be informed when they changed or added medications. I want to know exactly what they are giving him.
At night once the residence are in bed, the staff goes into the community room and watches TV - chit chat. I know they do not encourage him to socialize or participate in scheduled activities. I seem to be his entertainment. So, I bring games, music sheets and other things that might interest him. A lot of times he doesn't want to leave his room. I have been wondering if someone is being mean to him. He's not capable of remembering if it is happening. It is also against the law for me to put a video camera in his room.
I see him declining rapidly and am not sure if it is the lack of interaction and stimulation, the dementia or medication. That is why I demand to know what he is taking.
It is a difficult decision to make to put a loved on in a NH, but sometimes there is just no other choice and you have to really be on the ball and watch how the care is given. Maybe you should consult a Senior Citizen Attorney. The NH has to meet with you if you are the medical proxy. You have rights also.

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always check the medications get yourself a pill book and look up the side effects and adverse side effect of meds. That is usually the culprit. They like to drug them at night so they would be a bother. Also if you have a computer start doing a little research on dementia. Ask the Dr what kind of Dementia he has and start taking control.

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My mom was not on medicaid but in a NH for rehab for a few weeks after a hospital stay. When the director was not in or on vacation, the help would ask the residents if they wanted to get up and dressed. I actually overheard staff bragging that their assigned residents did not want up and out of bed one weekend day so they had an easy day. If you said anything to the director, staff would retaliate by further neglect or injury. Needless to say, I took my mom out of there and brought her to my home where I took over 24/7 care. It was hard but I did not suffer the stress of the neglect. This seems to be the norm for nursing homes anymore, unless you go to a self pay only facility. What is worse, most people would be up in arms if are pets were treated this way in a kennel. I learned a hard lesson of what nursing homes are like in the US and fear my own ageing now. This system is so badly broken.

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What you mentioned about the staff bragging reminded me of something I read that airline flight attendants hope you are sleeping when they come around with a refreshment cart. However, I would expect and hope that personnel in a medical profession would feel a greater sense of duty, particularly considering their "customers" live there 24/7, many of them for the remainder of their lives. I've noticed that some CNAs forget or get distracted such that promises don't get honored.

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Yes it is typical nursing homes are bad i have been there twice. Home care is bad! Elderabuse is rampid and continuses to this day to be a problem. A problem e eryone ignores

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I'm still disgusted about the recent horrible sexual predation incident(s) in Florida, and this also is pretty bad, IMO. It's an extreme example of what for-profit health companies are notorious for.
I think I'd begin documenting, by journaling and photographing, what I see when visiting. Not just about your mom either.
The best you personally could do immediately would be unscheduled daily visits. Consult with a lawyer or paralegal to learn more about you mom's rights and your own too.
I know how sloppy case management can become when no one pays attention. I needed to intervene when my SIL, who was noncommunitative and a complicated case, was not getting the right care. I was her DPOA (in Michigan) The shift nurses and CENAs were trying to do their jobs, but not communicating, so each one had a plan of action, but had her so messed up that they were exacerbating what should have been 'fixable' if there had been some consistency. I addressed this in a care plan meeting with the administrator and dept heads present. That got some attention immediately, but on a roll now, I ultimately had hospice step in, and the problems disappeared in a matter of days, including inconsistent administration of pain meds, feeding and toileting issues that resulted in fecal impaction and dehydration. Someone was now in charge and lead the 'team'.
You need to be an advocate. Read what you can about that here, you don't need to be isolated from fellow caregivers. They will help get you the information you'll need.
Then, present your evidence to the nursing director AND any outside authorities that can advise the next steps to take if things do not improve. Medical social workers and lawyers who handle these issues, Agency on or Commission on Aging, The local health Department here is also the same agency that homecare and hospice work under. In MI at least, patients are allowed access hospice care in nursing facilities and adult foster care homes (I've worked in both)
It's a rough road but it sure helps to know you are not alone!
Most of all take care of yourself or you won't be able to help her!
Be strong and stay well.

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Kathycan313 ; This is total BS your mom should receive the same care no matter what section of NH shes moved to !! Especally if she has declined then she needs more help!!! My opinion is look for and go to other NH that accept medicaid !! You are 100% right that is not normal and NO YOU are not expecting tooo much ....

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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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First I am so sorry your mom is in this position. Second your absolutely right when you are thinking they are neglecting you mom. You mom has every right to the same care as everyone else. NO matter what her insurance. If I where you I would be going to the head of the nursing department at the facility and report these issues. If you don’t do anything you mom is only going to get worse get bed sores bc she laying in one position for too long and her pneumonia is not going to improve either bc she’s not up and moving around. This IS abuse and neglect on the nurses and the aides that are supposed to be helping your mom. It’s completely uncalled for. You have to be your mother’s advocate now. You have to help her she cannot help herself. If she continues to stay like this it’s going to end in a bad way. You can also move your mom to a different facility. She has that right too. Just bc she has Medicade doesn’t NOT mean she has too put up with not being cared for.
This is unfair to your mom. Please go the the director of nursing someone is not doing their job. You have to start to stand up front your mom. I am sorry to say it so bluntly but I know how the system works unfortunately,but you are all you mom has right now.

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You need to say on top of Mom's Care over there. There are Nursing facilities all over the States that have this same problem. I realize there isn't enough help in this healthcare field, but with a nurse or an aid who take care of our loved ones, One should still Have a Heart from the Start.
Complain, Please. Your Mom, No Matter the Coverage, Deserves the Best. At any Rate, As I say, You Now need to stay on top of this and yell a the top of your lungs to Make sure they Know this is Unacceptable.

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Nope. Not normal, not okay, not acceptable. My mom was in a rehab this summer (in the Memory Care locked ward) that was totally depressing. Everything looked worn out, the people were all roaming and taking things from rooms, it was bedlam. (And you know where the word bedlam comes from!) I felt awful for her having to be there. Frankly it was gross.

Do you have the time to visit on a daily basis? Is she able to get into a wheelchair? If so, take her out of the room and into any other area of the facility. Is there outside area, a garden, a patio, porch, anything? Can you read to her? Bring her something enjoyable to eat or drink? I don't know what state she is in but any stimulation is better than what they are providing.

Are there any other options in your area for NH?

My mom now has palliative/hospice care, but this is in Assisted Living Memory Care. (Hospice is sort of a misnomer as she's not 'terminal' but dementia is terminal. I guess they haven't come up with a better name for it.)

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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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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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Whether they're understaffed or not, "The squeaky wheel gets the oil."

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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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Understaffed probably, so not much time to cajole mom to get up, get dressed, etc all to be taken either into the dining room or set in front of tv at nurses station until meal time.

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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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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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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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So, Kathy, the thing is, that as long as mom is legally competent, she is allowed to refuse clothes changing, etc.

Someone ( boots on the ground) might be able to persuade staff that mom might be able to be sweet talked into changing, but if mom says " no" this is not neglect.

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Is this normal nursing home care after moving to Medicaid?

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