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.
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.
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 !
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.
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.
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.
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!
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.
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.
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.)
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.
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.
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.
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.
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.
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.
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.