The family has always cared for their son, they are very close. They do an excellent job and the hospital is not taking good care of him at all, left unattended, etc. Hospital wants him on hospice protocol but he is not dying. The family is treated like outlaws and the son is not being cared for. Frankly, we are totally panicked. Oh, yes, the son is unable to speak, but does communicate with blinks. Any advice would be most appreciated.
Very Good News! On Tuesday Nov 21, Michael was released to his family and is now home. He is in extremely weakened condition, has lost much weight and his body is covered in sores, but he is home being lovingly cared for by his Mother and devoted sister. They have a fully stocked sick room including dressings, wound vac, oxygen and hospital bed.
The hospital Michael was in is a spectacular new building touting the finest care. It is part of a very distinguished hospital system that has an excellent and well deserved reputation for excellence.
That makes this case so much more puzzling. The care given to Michael was criminal. The family took pictures ( horrific ) of how they treated him. Ok, so there can be bad nurses anywhere. But this far exceeded that. We contacted the Ombudsman, Social Services responsible for discharge, even Risk Management. Nada. Not only no help, but they LIED about everything they were doing.
The hospital refused to even allow the mother to know the name of the doctor caring for him. They froze MyChart so we had no knowledge of what they were doing.
As Michael quickly deteriorated his Mother became frantic. We were truly desperate. We contacted the police department and told them he was being ritualistically murdered and could they help.
The answer was shocking. They said we have no jurisdiction there and can’t help. BUT WE HAVE HEARD THIS BEFORE.
We will never know what really happened but when it seemed all hope was gone, the released him.
Even though his Mom thinks he may not be able to overcome what happened she is grateful to finally get him home. He was at the hospital for nearly a month.
As I say, this is a highly distinguished institution. I have no explanation for what happened here. Because Michael is disabled to begin with he is covered by Medicaid. He actually lives in Pennsylvania but this illness occurred in Ohio while visiting his Grandfather. So he was put on Ohio Medicaid. The paramedics told us that nursing homes make a profit off of patients like him. I don’t know how that is possible, Medicaid doesn’t pay out that much.
Well, explanations aside, he is home.
I turned to the forum in desperation. I know I didn’t explain myself but believe me we couldn’t form sentences we were so stressed.
We may not ever know how this could happen.
But I thank you, and all the 17 others, who tried to respond to us.
It means so much to know someone else cares.
Jaeteres
"Thank you so much for reading my post and trying to translate the very poor explanation I gave. Perhaps you were able to sense the desperation I felt.
Very Good News! On Tuesday Nov 21, Michael was released to his family and is now home. He is in extremely weakened condition, has lost much weight and his body is covered in sores, but he is home being lovingly cared for by his Mother and devoted sister. They have a fully stocked sick room including dressings, wound vac, oxygen and hospital bed.
The hospital Michael was in is a spectacular new building touting the finest care. It is part of a very distinguished hospital system that has an excellent and well deserved reputation for excellence.
That makes this case so much more puzzling. The care given to Michael was criminal. The family took pictures ( horrific ) of how they treated him. Ok, so there can be bad nurses anywhere. But this far exceeded that. We contacted the Ombudsman, Social Services responsible for discharge, even Risk Management. Nada. Not only no help, but they LIED about everything they were doing.
The hospital refused to even allow the mother to know the name of the doctor caring for him. They froze MyChart so we had no knowledge of what they were doing.
As Michael quickly deteriorated his Mother became frantic. We were truly desperate. We contacted the police department and told them he was being ritualistically murdered and could they help.
The answer was shocking. They said we have no jurisdiction there and can’t help. BUT WE HAVE HEARD THIS BEFORE.
We will never know what really happened but when it seemed all hope was gone, the released him.
Even though his Mom thinks he may not be able to overcome what happened she is grateful to finally get him home. He was at the hospital for nearly a month.
As I say, this is a highly distinguished institution. I have no explanation for what happened here. Because Michael is disabled to begin with he is covered by Medicaid. He actually lives in Pennsylvania but this illness occurred in Ohio while visiting his Grandfather. So he was put on Ohio Medicaid. The paramedics told us that nursing homes make a profit off of patients like him. I don’t know how that is possible, Medicaid doesn’t pay out that much.
Well, explanations aside, he is home.
I turned to the forum in desperation. I know I didn’t explain myself but believe me we couldn’t form sentences we were so stressed.
We may not ever know how this could happen.
But I thank you, and all the 17 others, who tried to respond to us.
It means so much to know someone else cares.
Jaeteres"
I hope that Jaet will continue to support their friends who are in care of their son, and encourage them to seek legal help where they need it.
I wish all well, but this is NOT a case in which any FORUM of strangers can be of any help whatsoever, nor come to any conclusions whatsoever. Again. I wish them all well.
Here is an article on this case which points to the harm these separations can cause the entire family.
I am so sorry your friends are dealing with this.
https://www.thecut.com/article/child-abuse-munchausen-syndrome-by-proxy.html
https://www.agingcare.com/questions/any-suggestions-on-care-for-my-50-year-old-son-in-a-coma-483868.htm
So is family OPs family? If so, her son was in a coma a month ago. There is a reason why the hospital will not release him. Maybe because OP needs to prove to them he will get the care he needs at home. They cannot release him unsafely. Its just a matter of setting it up. If OP feels he is not getting propper care in this facility, then transfer him to another Hospital. He has that right. There are options before you go to a lawyer. The Ombudsman and APS. We are all aware that Hospitals discharge too soon assuming, because the patient says so, that they have care set up. There is a reason why this hospital feels they cannot discharge this man. As its been said, there are two sides to every story. The insurance company has to be going along with this too.
You seem to have done a lot of research about this OP.
If your research is correct given your deep dive into their past posts, then this "may" not even be a family member posting. Or may be. Who knows?
You caution that we should not judge this poster, and I agree with that. I think no one has. But I do think we SHOULD use our "judgement" in answering, and even in exploring former posts and a whole lot of conjecture about what "may or may not be" the story here when we ask for information and none is forthcoming.
I have been judging my world for 81 years. I even judge whether or not it's safe to cross the street by looking both ways. (A FEW times, at this age, hee hee).
We have limited time. We can only answer questions when we are GIVEN INFORMATION.
I understand there may be "reasons" when we aren't given answers.
BUT, the fact remains that no one can answer a question without information.
I personally ask questions when a lot of information is not given. It happens with some frequency. And sometimes you make a long thought out answer and then the OP comes back with more and more crucial information that makes your first answer a waste of your time.
I personally draw my own conclusions when no information is given, because one can always answer questions by saying "I am so sorry but because of (blah blah) I am not free to answer these questions".
And yes, we can give sympathy. We can give thoughts. We can give prayers. We can give best wishes.
But all those things don't accomplish anything for the OP or to solve their problem. And are of no value in general to anyone.
I personally will continue to hope that Jaet returns to give us a bit of information. If he/she doesn't I will move on answering questions where I do have some information. Anyone anywhere and for any reason in any distress, needless to say, has the best "thoughts and prayers" of decent people. As I said, they do nothing to help anyone.
"Stop, look and listen
Before you cross the street.
Use your eyes, use your ears,
And then use your feet."
This was in a very large city with lots of traffic. I think of it often when I have a busy street to cross. Indoctrination at its best!
Does hospital "wants" mean the same as hospital actively *preventing* the family from taking him home? (Maybe the issue is that they will only discharge Against Medical Advice, and that's treacherous for insurance reasons?)
Might the hospital staff be appeased if the family demonstrated that hospital-adjacent people would be involved in the return?
One of my own escapes from hospital with mom was, I believe, helped by my hiring medical transport and a home health aide (from the company recommended by the social worker) for the return.
If they are suspicious of family, maybe this would help?
If not: how about a lawyer? I'm not sure what area of law this would be, but someone on a disability forum might know?
Sorry that all of my suggestions are such expensive ones.
And sorry that you are going through this. I still remember the shock of learning that this sort of thing could even happen. I'm U.S., and we pat ourselves on the back about our freedoms, but stuff like this calls all of that self-congratulation into question.
From the wording of your question...
I am guessing you are not related to the person that is IN the hospital nor are you related to the family.
If this is the case you need to back off.
If you are an employee of the hospital you need to respect boundaries and not get involved.
If they need help getting their son discharged you can tell them that they need to talk to a Social Worker or Discharge Planner.
A bit more information might be helpful though.
What family needs to find out what is needed for them to discharge him. If things that can be done, do it. Once he is home, they usually don't check up on patients. They can also call the State Ombudsman if they feel his care would be better at home. So if they say he needs an aide, hire one, they can always let the aide go. You just need to do what you have to to get him home.
I had a friend who was taught how to do her husbands peritoneal dialysis at home. He had to go to the hospital and the reason they would not release him was because he needed
peritoneal dialysis. Friend told them she was trained in it and they didn't believe her. She had to have his doctor call the hospital to confirm she did know how to do it. They discharged him.
Without them we can't be of much help I am thinking.
That might be the case here.
Meanwhile the hospital worsens so many things that would be manageable at home.
p.s. Obviously the hospital is good at some things. Too bad they seem to mostly do the other things.
Maybe we should call it *health-dost*.
Something like this happened to a friend long ago. Her son with severe Cerebral Palsy was being cared for at home by 24/7 aides. He was being fed by mouth and, due to swallowing issues, was on a pureed diet.
At some point someone called CPS or APS (I don't recall if he was over 18 or not). He had lost a dramatic amount of weight because of the feeding difficulties.
He was admitted to a facility where he eventually consented to a feeding tube. He lives there, is well-cared for and has similarly disabled friends of his age group.
Where does the hospital want to release him to?