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.

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! 🥰

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).

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.

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!

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.

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 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...

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.