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?
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.
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?"
I know it is hard to see him in this position, but you need to respect his wishes.
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.
Sometimes the only way to help is to step back and call the authorities to intervene.
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.
If brother is just tired and ready to give up, it is possible doctor can change method of care to hospice/palliative.
See All Answers