I use to visit him 2x a month for years until I relocated to another state. During my most recent visit (he is 67 yo), he looks like he lost weight, looks frail, keeps nodding his head (hospital said it's probably medication side effects) and is sleeping every time I call, no matter the time of day. Hospital said he needs a higher level of care but my brother doesn't want to leave. The facility is also a nursing home and my brother has Medicare/Medicaid. We considered moving him to my state but facilities are practically nonexistent after doing research. He also has mild dementia. Should I find a better home for him or leave him? He insists that he doesnt want to leave .
I’m wondering if you ‘promised’ your parents to supervise his care, never leave him alone, and make sure he is happy. I have a neighbor caught in the same trap, also with an intellectually disabled brother in a home interstate. It’s just one of the many ‘promises’ that are made in good faith but can’t be kept because things change. Let yourself off the hook! Be very very glad that he is contented where he is.
My MIL’s will actually willed her daughter to her sons. What kind of idiot lawyer would even draft up a clause like that bequeathing a human being to others. But there is at least one idiot lawyer in NYC who thought that it was okay to write a clause like that.
I told DH I was never consulted and I wouldn’t be taking on her care for the remainder of my life. How dare his parents think it okay to exploit their daughters in law.
Sad situation because the responsibility is dumped on the other sibling and his wife but they can figure it out. I am not the solution to this problem. I am dealing with my parents EOL issues. I have enough in my plate. I am hoping I will survive this ordeal and that it ends soon and can be foot loose and fancy free. I want to be able to travel while I sm
still healthy enough to do it.
Here is a great link for the state of mental health in America. It’s divided up into categories and then breaks it down by state. So you can look at your brother’s state and compare it to your own.
https://mhanational.org/issues/state-mental-health-america
You can also check the Medicare.gov website for the facility he is currently in and compare it to others, not necessarily to move him but to give you a heads up on known issues.
Know that the State rating might be different from the Federal rating for whatever reason and if you can find that, it might be of interest.
It seems to me that what your brother needs is a personal advocate. If you can find someone to drop in and visit with him a couple of times a month that might help. Also if you could get copies of any medical records on an ongoing basis to compare things they track. Weight being a good one. How well he is eating. Where he is eating etc.
My DH aunt is 97 with dementia and in a nursing home. She lost about 30 lbs over a short period of time and with the help of megace an appetite stimulate, help with eating and a protein drink she has stabilized at about 110. She’s only about 5’ so not a Bad weight for her but she was losing during and following a respiratory illness. She is weighed weekly. It took about a year to get this system worked out. I had to get personally involved on multiple levels to make it happen. So if you can drill down on a care meeting on a regular basis you might be able to tweak his plan enough to matter. I also learned the hard way to make sure the doctor puts in an order for anything that you and the team come up with to try as it won’t happen w/o those orders (my experience in aunts case).
Also, ask about blood work normally done on a routine physical. Your brother is approaching the age where health issues might show up. Perhaps he needs a physical therapy exam and a round of physical therapy. Most NH if they have a rehab center are happy to have a reason to bill for therapy if they can justify it. I’m seeing your brother as a quiet easy patient and them not thinking he needs any tweaking. And he may not. These are just things that come to mind that you might try to see if it will make him feel better. It might help them see he is too drugged to do exercise and have a clear way to demonstrate he needs less if that’s the case. Just brain storming here with you.
And Medicaid does not go over State lines. Each State has their own resident qualifications. I have a friend who is in a NH at the age of 45. He is challenged and cannot be away from his Mom who is in the same home. Long story why he ended up there but his brother who lives in Fla came to NJ to have H live with him. It was over a year of torture for my friend. His whole life he lived with Mom and family. For 4 years he lived in a NH. Always everything done for him. His brother works so H left alone. He was in a psychiatric hospital at least 3 or 4x. He did not want to go back to brothers so he was placed in houses where people in need share the house. Problem is these people don't need to be overseen 24/7. They can cook, clean and do laundry for themselves, H can't, never taught. They tried this more than 1x with him. I guess no group homes. Which is what H needs. So, Fla sent him back to NJ and he is back into the home with Mom. He seems happier.
Don't take your brother from where he is.
If it would ease your mind, how about Zoom of Facetime calls set up by his facility so that you can actually see each other? They might not be willing, and your brother might not want to participate, but these things are commonplace now when we can't visit in person.
Good luck.
I sure wish you good luck and hope you will update us.
Are you his POA?
If there is no place near you , you really don’t have the option to moving him near you .
It’s sad , I’m sorry he is declining . Have they tried changing meds are lowering a dose ? Maybe since he’s frail he needs a lower dose or a different med . Have they looked for other reasons for the weight loss ? Is he on an appetite stimulant ?