My 68 yr. old brother is refusing rehab, refusing a leg amputation and has a bad heart valve. For 7 months now he has been in and out of the hospital with leg infections, sepsis, etc and needs an amputation and heart valve surgery but is too infected to have either. Because he was in a horrible rehab facility last Dec. (I think he may have had a nervous breakdown there) he refuses to go back to one and so the hospitals send him home with minimal care (people to wrap his wounds, check his vitals etc) and the rest of his care falls to me his sister (69) or anyone I can hire. Often he signs himself out without the drs. OK and doesn't follow any of the doctors instructions like keeping his legs raised or not loosening his bandages.

He has some money but is too cheap to hire someone at more than $15.00 per hour so we get people who just don't come, or he drives them away with his demands. For $15.00 an hour he wants them at his beck and call to do yard stuff, pick him up at the hospital, and drop everything at a moments notice to do what he wants. I live 45 min. away and have my own health problems as does my husband. He is starting to have dementia and gets confused and forgetful and although he was never a mean person, he can be now. He will not give up control of anything and if I try to hire people on my own he refuses to interview them or takes a dislike or whatever without even trying. I am exhausted and stressed and don't know how to help anymore. I don't know if he lies to us or just forgets but we get very different stories from the hospital people than what he tells us.

I can't just leave him on his own; he can't walk or do anything at all, is too weak to push himself in a wheelchair and has limited use of his hands from neuropathy. I am so tempted sometimes to just leave him alone but how can you just leave someone in that condition? Even getting to Drs. costs him $150.00 a trip for a wheelchair van, so me or his caretaker of the moment have to come, get his car and drive him. He just wants to die I think and believes people just want to take his leg because they make a lot of money off of the operation. He will not take medication for depression, only anxiety, and refuses any medication he feels is superfluous.

Anyone have any ideas of where to turn?

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You are running yourself ragged for someone who does not care. And why, so you won't feel guilty? Someone said here that guilt in self imposed. You cannot help someone who won't help themselves. I have a friend who complained all the time. I helped, I suggested. She always had an excuse why she couldn't do it. Well, now she is in a NH and has lost everything because she did not take advantage of resources out there. At 71 this is now her life and because of COVID she is stuck in a room.

Your brother is in a Catch 22 here. He needs his leg removed but his heart may not get thru the operation. I will assume that ur brother has diabetes. He may not be so much suffering from Dementia but from not taking his meds correctly. Or, his heart is not working properly and oxygen is not getting to his brain. You cannot help someone who will not help themselves. You can be there for him but set boundries about what u can and can't do. Your first responsibility is to ur husband. I think APS is a good thing. For no other reason to find him resources.
Helpful Answer (15)

Taking this one step at a time, you say your brother is too infected to undergo an amputation at present, so to be honest that is not even on the check list right now. This could be systemic infection, and if your brother isn't on IV antibiotics he may not make it.
You say there is dementia. Unless he is diagnosed as early onset Alzheimer's Dementia, it would be early days to have dementia. Is there anything else going on that you know of. Is there any substance abuse, either alcohol or pain medications that could be impairing his thinking?
Unless your brother is demented enough to have Conservatorship or Guardianship there really is nothing that you CAN do for him. He has apparently made his own decision. In all truth, once the amputations start it is often losing yourself an inch at a time and with poor healing resulting from a failure to be diligent about self care, this could be worse than nothing at all at this point. Is your brother diabetic?
I wonder, is all of this behavior and attitude new? Is his non healing leg causing depression and hopelessness? Are you his POA or his DPOA if needed to step in? Have you spoken with him and his doctors? I assume his doctors have filled him in.
Beyond this, I think there is little you can do for your brother. NOW, what must you do for yourself? Are you able to go on with this caregiving?
I can only say to take a day at a time, make suggestions, when they are refused, move on. If your brother refuses help for himself make it clear that YOU need this help, if he does not, and that without it you will have to move away to be on your own. What are options for yourself, is what I would say? Because all of this worrying about your brother who is on every level not cooperative is ignoring the greater question that has to be looming which is "How can you conceivably go on if this continues, and what are your options if you cannot go on?"
Helpful Answer (12)
Beatty Aug 2020
Report him to his local Agency on Aging and tell them he is a vulnerable senior with multiple health concerns. Then step back. You cannot save him from himself.
Helpful Answer (11)
vacayassist Aug 2020
I guess I wonder what they will do for him? Can they put him in rehab against his will or send in people to help? I don't want him to feel that I have abandoned him and no one is on his side. I am just tired of the immense struggle to keep him alive.
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You can’t fix this, he’s an adult free to make his own choices. I hope you’ll report as already advised. It’s sad, but you can’t change it. My dad had a coworker that was told he either had to have his arm amputated or he’d die. He chose to die and he did shortly after. He was deemed an adult with freedom to choose. Take care of yourself
Helpful Answer (9)

If he is mentally competent, he doesn't have to do anything for his physical or mental health. It is his choice. His doctors have probably told him consequences of his untended health problems. Ask your brother what the doctors have told him about his heart and legs and consequences. If he says he would rather not get them treated, he is saying he would rather die. Ask his doctors about your brother's prognosis and if they can prescribe hospice.

I know it is hard to see him in this position, but you need to respect his wishes.
Helpful Answer (9)

Amazing to see this question. I am in a similar situation and have no answers for you, but just want to say that I understand. My brother has been in the hospital icu for 2 weeks at death's door, just moved to the cardiac unit. He sat in his house without being able to walk much for 5 months, self diagnosing an old sports injury as his issue, when all along it was his heart and clots traveling around his body. When we tried to intervene a couple of months ago, he called the police on us and we were told if we called an ambulance again or showed up without his permission we would be charged. He somehow convinced the paramedics and police that he was absolutely fine. So, then we were left to just make sure he was getting food and getting the trash out and the mail in, but he wouldn't allow anyone too far into his house, for fear of covid we thought. Actually, it was the condition of his house. He had made all sorts of excuses to not have home care or even a cleaner. Long long disgusting story there, but he somehow is still alive. He nearly and may still lose his arm because of a clot, which is what finally got him to call an ambulance for himself because he was left with one working limb. His doctors have repeatedly said he was dying. But now they say he is eventually going to skilled nursing. He has been given some medication for his depression, which made him start to care about living and that's when things turned around for him there in the icu. It's been explained to me by his doctors that he is mentally ill and that's why he can't make decent decisions for himself. Fear? Stubborn? He has excellent health insurance and money, but didn't use it to help himself. It is so confusing to us, but we are glad he is finally where he is taken care of. Future? We just don't know.
Helpful Answer (8)

Vacay, from your profile you are caring for many family members. Your brother is the biggest & most pressing one right now by your current question.

I want to say YOU are important. Repeat this to yourself over & over. Your family members have choices. YOU have choices. Their bad choices DO NOT mean you have to fix their problems!

I am going to sound harsh regardiang your brother - I don't mean to be & do have empathy for his situation & yours, but I'd love you to realise that laying down your own life, your own health will only harm you - not help him.

Dementia shrinks & damages the brain & mental illness issues are very hard. Let go of expecting reasonable descisions if he is unable.

By his refusing medical treatment/rehab/home care the consequences will be HIS. This does not mean YOU have to step in at all. It sounds like he is struggling to understand his situation or lacks insight.

What WILL help him is getting some professionals involved in his care. They can guide him & also advice you of the process.

Please keep updating. Many have walked a similar road here.
Helpful Answer (8)

Some people don't want to be rescued from their choices.

Sometimes the only way to help is to step back and call the authorities to intervene.
Helpful Answer (7)

It is so hard to watch someone that you care about not make good decisions and deteriorate before your very eyes.  Unfortunately, we can't make someone want to live.  It's hard to watch and I feel so bad for you and understand how frustrated and tired you must be.  Have you had a heart to heart with your brother?  Tell him that his money won't mean anything if he dies.  Tell him that you think his paranoia and decisions are pointing him in one direction and you can't bare to watch it.

I can't pretend to know what it feels like to make the decision to amputate a limb.  He may be seriously angry and depressed over the thought of it and prefer death to making that decision.  Ask him.  It might help you better understand where his head is at.  If he does tell you he doesn't want to amputate or do the things needed to keep himself alive, then tell him you love him and wish that he felt differently,but you're not going to beg and plead or nag him about it.  Ask him if he wants assistance getting hospice involved, so that what time he has left he can be comfortable and out of pain. 
Let him be in the drivers seat of his own life, but be supportive.

Take care of yourself.
Helpful Answer (7)

Some of the confusion is likely due to sepsis and the ongoing infection. Why not send your letter w/concerns to his doctor? Perhaps it would help doctor understand what is going on in the home. Dr might be able to get other in home care in the way of more visits per week just to monitor the leg, the infection, and his medications.

If brother is just tired and ready to give up, it is possible doctor can change method of care to hospice/palliative.
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