I need advice regarding my brother, who is in a nursing home with advanced dementia. Am I expecting too much?

You are absolutely not asking too much, this is neglect. My mother was in a nursing home for four years completely physically disabled and there was never once a bedsore, much less a weeping wound. Your brother isn’t being repositioned nearly often enough, his skin care is pitiful, and you’re right to make noise over it. There’s a ombudsman you can contact, and why worry about saying something getting your brother poor treatment, he’s there already

Report this facility to the Department of Health in your state.
You can also report them to the Inspector General. Call the Department of Health and Human Services in the county the facility is located in and ask where else you can report them. Call local television stations and advise them of this neglect.

What lists is he on? If it’s 3 different facilities, get him on more. He needs to get out of this place. Good luck. Please come back and keep us updated.

Your brothers care is heartbreaking. Does he seem to be bothered with it? Does he appear to be in pain?
My aunt has a problem with picking at her skin. Her poor ear is really getting attacked these days. She moves from her ear to her nose. Mostly it’s her ear. At one time I would try to stop her. I would show it to her with a mirror. She cried and said “I don’t want to do that to myself”. So all I accomplished was making her feel bad. We just clean it and put an antibiotic salve on it and go about our business. If someone mentions it she will say “I know I shouldn’t scratch it”.
It is not even an issue compared to your brother.
I have no suggestions. I just wanted to say I hear you.

I'm so sorry to hear of your brother's suffering and neglect! This must be heartbreaking to you! I might add, if you can do it without being too obvious, take pictures to take to your ombudsman. God bless you and your brother going forward... and every other resident of this facility! No, you are NOT expecting too much! This facility is not meeting a minimal standard of care, and they are certainly not providing the services for which they are being paid. Courage!

I know this must be stressful. I wonder if you know what is causing the foot problems. Does he have diabetes or some kind of circulation problem in his lower extremities? Since, it is really impossible to prevent a resident from removing bandages or picking at sores, I'd explore a hospital that caters to those with intellectual disabilities, dementia, etc. who are also medically equipped to treat those with serious medical issues. There are three of them in my state. The person has to qualify by medical need. It sounds like your brother might.

While he seems to be having horrible trouble, with his feet, I'd want to know more about how they are trying to keep him from removing bandages. As you know, restraints are not really allowed. I don't see how they could prevent him from doing this, except for one on one supervision around the clock.

Is there a way to use a bandage that would be very difficult for him to remove? I don't have any issue with reporting to the facility's Ombudsman, because it sounds like he does need help, but, I'd reserve judgment on any neglect. His doctor should be able to prescribe the type of bed and other equipment that he needs. I hope that you can find him some help.

Go see the Social Worker There and Put in a Complaint and an Investigation will Occur I am Sure..This is Inexcusable...

You can view health inspection results and complaints at
https://www.medicare.gov/nursinghomecompare/search.html?

From what you've written, I'd guess the facility already has lots of citations listed in its "Health Inspections" section. Even if they do, I think it's worth (a) writing a letter to that director documenting what you've observed about the lack of staffing and (b) lodging a formal complaint with your state.

Yes, there could be retribution, but from the sounds of it, it couldn't be much worse than it is already. I'm sorry and wish you and your brother well!

a person with advanced Alzheimer's will pick at their dressings, and there is no way to stop this other than you being there 24/7 watching him, or you becoming his caregiver which he will still pick at his dressings. It sounds like he is diabetic or has circulation problems. Have you considered DNR and hospice care? But putting on a bed alarm is not an unreasonable request; however, some patients will jump out of bed every second making bed alarms virtually useless. He can be put in a specialty unit where the mattresses are practically on the floor so at least he can't fall.

If you file complaints it makes me wonder if they will find a cause to discharge him from the facility, because the facility cannot meet the needs of the specific patient. See this link.
https://www.peoples-law.org/nursing-home-involuntary-discharge-and-transfer-faq

This is such a difficult case and I'm so sorry that you and your brother are going through this. It sounds like there are 2 sides to this story. While it sounds like he may not be receiving optimal care, he is also a very difficult patient to care for. If he is up and walking around, then the sores must be caused by something medical, not necessarily from not being turned in the bed, since he can probably turn himself. But it sounds like poor care is making the sores worse. I have to be honest, I'm a Social Worker in LTC, and I would not hold my breath waiting to get into those other facilities. Once they review the notes from the current facility, they will not likely accept your brother due to his behavior and high level of need and risk. They are under no obligation to accept him, unfortunately. In my area there is a nursing home that only takes Alzheimers/dementia patients that might be better at managing his behaviors, but his medical issues will continue, or worsen, due to his behaviors. Maybe there is one in your area? You could report to the Ombudsman, but in my area, they are weak and it honestly would not do anything. Reporting to DHS may be your best bet. They will be out the facility within a few days for a full out investigation and management will be required to improve their care or find some way to help your brother, and they will do it with a (fake) smile on their face since the state is telling them they have to. I work in a great facility and these issues don't come up much, but in another facility, I might worry more about retaliation with a report to the ombudsman than to DHS, since the ombudsman is just kind of a nuisance for the facility, while DHS is the hammer and the facility should be bending over backwards to make sure they are complying with whatever DHS says so they don't get shut down. I hope things improve for your brother. Be a strong advocate.

Yes I would contact the office on aging, the county social services office, department of health and human services, a lawyer that might do a little pro bono work, the local newspaper, a syndicated newspaper, I would contact any and everyone possible to call this place on the carpet. Sounds like you’ve been patient with them long enough. And I wouldn’t worry about retaliation on your brother because honestly, the crappy care that he is getting can’t be any worse. If anything when you let people know that you are strong and you won’t put up with stuff they get fearful and they start doing a better job. Rise up and be the lion! You can do this. Take pictures and document everything. Don’t let the bully, and in this case it is a collective bully, push you around. Push back! You have the right and the responsibility to do this for your brother. Go woman! We’re behind you! 🥰

What state? I'm assuming Montana, but want to be sure.

I'm writing before reading the other responses. It is a dreadful disease and a dreadful situation. And clearly the systems and our society are demonstrating a total failure in this case and no doubt others of how to care for the most frail and needy, which could be any of us in the future. So fight like hell. I don't know who I would call first, but your brother has been on a downward spiral...but he's going faster with this level of care. The staff may be overwhelmed and feel helpless, other places may be slow to accept him because in the end, the only thing that will give him a fighting chance I'd guess is 24/7 care/attention to keep him from messing with things. He may be in pain and not able to express it so maybe that's why he's fussing with the bandages and himself...My heart breaks for both of you. I also think it is outrageous and imo criminal the neglect by licensed professionals in your situation. They may be limited in what they can do and have a defense for themselves...I don't know. I also don't know whom I would call first...an elder law attorney, the long term care ombudsman, hospice. I think it is inexcusable that the sickest among us who need 1 on 1 attention and are in need of a nursing facility results in families being expected to provide private hire while paying fully for nursing home care. It's wrong. Please let us know what happens...and know so many of us will be hoping for the best outcome...

He had an amputation two weeks ago, essentially. He is also at risk of infection from his chronic lower limb problems.

You ask if you're expecting too much. What sort of care would you agree is adequate for a patient as high risk as your brother?

I am making every possible allowance I can for how difficult a patient your brother is. His understanding is limited, and his condition is extremely hard to get under control. But. But. For heaven's sake! - are they even trying?!

Yes, make a formal complaint: the NH should have information about how you can do this and should give it to you without argument. If not, go to your state or county's website and search for "how to complain about poor patient care."

The other thing you might like to try is contacting the hospital surgery team and asking if they can help you get his post-op care sorted before they see him back there either septic, or needing more bits cut off.

I'm just wondering out loud...but if an elder law attorney finds that the care provided was neglectful, in my fantasy because they don't want their life-threatening care to be known and since many nursing homes have corporate entities with big bucks taken from all of us...maybe a lawsuit settled out of court would result in enough funds coming in to you/your brother that you could arrange from private 24/7 care. Of course he might still be a challenge...and maybe the picking behavior is either a symptom of pain or something else...

Call your state's ombudsman.....NOW. File a complaint against the NH. Get APS involved as this. Is. Unacceptable.
Also, double check with the other NH's and ask if they can get him in as an emergency case for reassignment.

I hope you will post back, if you have time, to provide an update on this. I am very interested to know what is done.

I am also curious as to what the state says must be done for a patient in a similar situation. Even in a regular hospital, how would the staff prevent the patient from removing bandages and aggravating the condition? How would they prevent him from walking if he is bound to do so? It would seem that the resident/patient would need one on one supervision around the clock with the authority to physically prevent him from removing the bandages or walking around on his damaged feet. Is a facility required to do that? Is it negligence to not do that? Is it LEGAL for the staff to do that? So many issues to be considered.

I would be curious as to why his facility has not said that they cannot keep him due to him needing a higher level of care, though.

No you are not asking too much and I doubt your brother is the only patient experiencing this an inexcusably low level of care. Being understaffed one day, one shift, maybe even 2 or hey a week is not ok but one can see ho the starts might align to make it happen, this however sounds more like the norm there than the exception and they need to be put on notice. If you let them get away with this and every other patient's family does the same, fear of retaliation or not you are contributing to the problem. They are paid to care for sick and difficult patients and you aren't asking for Cadillac care here. I would put the facility on notice by note if you have to since they seem to be dodging you and report the health issues to his doctors, the hospital that just released him back to that facility and the state agency in your area that oversees elderly care and NH's. They have allowed this to get to a more than neglectful stage it's dangerous to his health so from my perspective some of those chances to self correct have passed. You probably shouldn't wait for them to prove themselves at this point, you can warn them but time to get the ball rolling with officials if the facility happens to shape up quickly and correct everything suddenly that's fine and what you will report and officials will find when they investigate the complaint. That should be putting them on enough notice to prevent retribution because they are at a higher risk of being caught doing that. You don't have to be nasty or threatening just firm and follow through fairly and acknowledging your brothers behavioral difficulties, not being the "my child can do no wrong" parent makes it clear you are being reasonable with your expectations.

Your brother isn't the first and wont be the last dementia patient to pull bandages off and pick at their sores, I'm sure there are various reasons this might be happening that the professionals have experienced before and they should have ideas/experience to figure out how to resolve it. There must be methods for making it impossible for him to get the bandages off or keeping him bedbound if that's what he needs. There must be methods for preventing the pain and or itch if that's what's causing him to pick or divert/distract him if it's boredom or simply dementia.

In the "Good Old Days", we could put "mittens" (padded Ping-Pong paddles) on a resident's hands and/or tie the resident's hands to the bedrail or wheelchair arm to prevent the resident from picking at their sores and scabs or removing dressings.  NOT NOW!! 

NOW the Resident has the RIGHT to pick at their sores and scabs or remove their dressings.

If I was your Brother's nurse, I would be banging my head against the wall because no matter what I do, I can not keep your brother from removing the dressings and picking at the scabs--unless I violate his Resident Rights.  

FIRST: The doctor and nursing staff need to find some way to prevent your brother from removing the dressings and picking at the scabs.  Maybe the doctor needs to order some medication to calm your brother while the toe amputation wound heals?  Is your Brother receiving any pain medications for the amputation pain?

Depending on the size of your brother's legs and feet, maybe pajamas with feet in them with non-slip bottoms that can be put on OVER the dressings.  Definitely NO SHOES that are tight or made of leather or other non-breathable material.  Maybe over the dressings, the nurses can put the stocking/tubing that is normally used under a cast.  It can be cut to various lengths and is inexpensive and can be washed or thrown away when soiled.  Maybe diabetic socks sewn onto the bottom hem of lightweight sweatpants.

Is your Brother receiving an antibiotic for the bone infection?  Osteomyelitis is a NASTY infection and often required IV antibiotics.

SECOND, your Brother needs to be on a Medical Nursing Unit that has a lower ratio of staff to residents and NOT on a "Minimal Supervision" Nursing Unit/Floor.   You stated 1 RN after 3PM for 2 floors(units)--How many LPNs and CNAs are assigned to the nursing unit that your Brother is on?  How many residents are living on the nursing unit/floor?

Is your Brother being seen by a CERTIFIED WOUND NURSE?  If not, he needs to be.

This situation needs to be reported to the State Department of Health and Human Services that governs nursing homes/long term care facilities.  If you let the nursing staff know that you understand that your Brother is a difficult person to work; there might not be as much of a possibility of retaliation as mentioned.  A lot of it depends on the relationship that you have with the nursing staff and with the administration.  You need to have a Care Plan Meeting ASAP with the Nurse Manager for the nursing floor/unit that your Brother is at, the Director of Nursing, and Social Services Director.
 
Does your Brother have enough money to hire private duty nurses or CNAs who can be with him during the time period that he tends to remove the dressings?  He needs 1-on-1 care and the caregivers need to have the right to restrain him in some way in order to prevent him from picking at the amputation site and wounds or open areas or scabs. 

Also, does your Brother become angry or belligerent or is there the potential that your Brother might physically hurt one of the nursing staff when they attempt to stop him from removing the dressings? 

This is a very difficult situation and it might take time and patience with lots of "trial and error" to figure out the answer(s).

Call the State and APS. Usually(at least in WA
State) the State conductes yearly inspections for NH and Assisted Living Facilities so they can maintain their license to house people. This sounds like they are in violation of taking care of their patients. You may even be able to show them the pictures you have taken. If they are a corporate company go over the director's head and talk to his boss about the problem.

You must take action now with the highest level of authority of this facility! This level of " uncare" is not acceptable. Your brother could lose more than a toe if you don't speak up on his behalf. You must be his patient advocate.

There are already excellent answers here about what to do.
This is so upsetting and you are under so much stress, I just wanted to shout out my support in the only way possible.
Who is supporting you? Do you have anyone who can help you advocate? Do you have a friend or relative who can help you manage all of the phone calls and contacts that you need to keep up with just to deal with this?
Same thing-- do you have someone who can make you a meal on a regular basis? Please reach out to your support systems and get all the support you can, because this is your time of need.
I wish you good luck in this very difficult situation.

montana: Goodness. Praying you get some relief soon and some answers.

I believe all states have Office on Aging offices in the various counties which oversee anything to do with seniors. Also, go to your state capital - ask for the Governor's office and get one of the assistants on the line. They are there to field questions for citizens in their state - ask for help and how to get it and whom to call. They will help you. Also contact your local senators and legislators as they too can step in with information to help you. This is horrible and something must be done at once. The Office on Aging has ombudsmen who go and investigate and check things out. Also each state's capital has a Department who licenses health care facilities. Get hold of their top person - governor's office and direct you to them.

I want to thank everyone for your encouraging support. I had a mission today and went to about 10 nursing homes. I have found 3 within a 20mi radius that take special care of patients in my brother's position. I have an appointment with the director of admissins at one of them Weds. I am so excited... I am finding that there are more women in these facilities than men and beds are at a premium for males.
This is one of the most stressful situations I have eve been in. Today I went with him to the orthopedic surgeon who did the amputation. They where not pleased that he is and has been walking without his special shoe, scooting around in his wheelchair using his feet to move, and not having his leg elevated.
Say some prayers that they have a bed at the place I am going Weds. I think once I have confidence that he will be taken care of properly I may get some of my life back.
Again, thank you all.

I'm really mad that you or anyone else has to be at the mercy of incompetent care. I got upset when I noticed that mom's toenails would have been too long for eagle talons but the policy there, and I'm finding out pretty much everywhere, is that the don't cut toenails because they worry that it will turn into something like what your brother has. That being said, since he already has skin ulcers that aren't healing and you told them about it with pictures and they waited until he had to have his toes amputated damn straight I'd figure out the best way to file a complaint. Being that you can't get the director to listen to you see if they have a website most do. The director's email is probably listed scan the pictures and send her a heads up. I'm an @ss and would also mention that you have the local paper's email as well and you're sure this would make a wonderful story.
Is your brother diabetic? Even if he does that is no excuse for the length of time it took them to respond.
Here's a pre warning there is a high possibility that they will tell you your brother is "causing problems with the other residents and sexually harassing the staff. They're sorry but your brother needs to find a new nursing home". I wish you the best of luck my only other advice would be to either stay longer if you could or maybe have a friend stay with him?
I have a friend on hospice who doesn't have diabetes but has had an ulcers on his left calf for nearly two years. He doesn't have dementia but use to pick at the bandages in his sleep. They wrapped it with something that made it harder to remove. I'm not sure what or how it works. I just called and got his voicemail. I would ask if they have something like that. When my friend calls back I'll let you know what he uses. Good luck.

Montana, how did you make out at the appointment with the potential nursing home? Do you think he’ll be able to move?