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?
Sometimes the only way to help is to step back and call the authorities to intervene.
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 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.
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.
Other than that, he can hire a lawn person and have his groceries delivered and have cameras installed. He can also have a medical device to call for help if an emergency.
You can hire Caregivers for $12 an hr
You can go visit him once a week.
Maybe he's depressed. Try getting him interested in something.
Maybe you can get Church Members to visit him.
Visiting Angels was $27 2 years ago. They are backgrounds checked, trained, and insured.
I know it is hard to see him in this position, but you need to respect his wishes.
If brother is just tired and ready to give up, it is possible doctor can change method of care to hospice/palliative.
https://www.hypnosisdownloads.com/depression-self-help
You COULD download the recording to an iPod or other digital player and hook it
to a set of unobtrusive speakers - set to play24/7. The subliminal messages would influence his mind-set and behaviour.
And I know the official word, from the US Govt, is that subliminal messages are not effective. But if they AREN'T - why are they banned in TV and Radio advertising?
Stores use subliminal messages over their PA systems to reduce/inhibit shoplifting as attested in Congressional hearings.
https://www.upi.com/Archives/1984/08/06/Stores-use-hidden-voices-to-prevent-thefts/9779460612800/
I have just hired new caregivers and one has been ongoing and said she will quit if that is his decision, so I will keep who stays if that is the case and call in hospice. Of course, I will ask for confirmation from him but I think I am OK if that is what he wants. He has never followed dr. directions and I know after the amputation it will just be more of the same, so I would only expect more problems. I think he just wants peace and I can understand that.
He has no wife or kids, always been a bachelor but the last 10-12 years have been lonely and debilitating for him as his health problems from diabetes have been ongoing. He has only family and a few friends who live far away, so taking his leg will really leave him isolated, except for family. He was a bit more hopeful before thinking he could possible get a prosthetic but now those hopes have gone.
JoAnn29, although my brother is a diabetic his leg problem is from a deterioration from charcot foot that he had operated on 12 years ago. That is killing the tissue left in his foot slowly and the drs have been up until now, really unsure of what to do. It seems they went quickly from 1 /2 leg to whole leg amputation which has changed the whole scenario for us all. And he will have to go to rehab which he has fought mightily since his last stay. I will go have a heart to heart with him today after I hear from the drs.
Thanks for all your support.