How can I help my brother best who refuses to care for himself and would rather sit at home to die with no help?

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How can I help my brother best who refuses to care for himself and would rather sit at home to die with no help?

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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?

Burnout Family Caregiver Refusing Care Siblings

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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.

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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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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.

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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

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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.

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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.

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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?"

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🌟🌟🌟🌟🌟

(1)

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Neuropathy means he's diabetic, right? Me too. He's facing some horrible reality right now, so his complete denial is sort of understandable, but it can't continue. You're right; he WILL die if he keeps this up. Could you round up his friends and stage an intervention? You need to tell him that he's weeks from killing himself and you won't be a part of it. Maybe you could get him to appoint you as his medical POA before dementia takes over completely. Good luck.

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I am very sorry to learn about your brother's health. Antibiotics are needed to get rid of infection that got out of hand, but if he won't accept any help, he is doing harm to himself.

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If you are diabetic antibiotics don't help. You are talking about Gangrene here. Because of bad circulation in the legs, the tissue starts to die. Usually starts with the feet and toes and even the foot gets amputated to impede the spread of Gangrene. Once gangrene takes hold amputation is the only cure if you want to stay alive.

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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.

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Can't you step back and call elder care or the county agency that looks in on people? This way you don't feel guilty and professionals can come in and determine if additional support is needed. Let your brother know first that you love him and you want to help him. Ask him what he recommends. Explain to him that you need to take care of your own health and so you need to step back a bit if he can't work with you, but that you will need to call the county to review just so that you know you did not leave him without the support that he needs. Emphasize throughout the talk how much you care and love him and that is why for all of this time you have been taking care of him so much but that you respect that your way may not be working for him and you respect that. Good luck.

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Perfect advice......step back.

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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.

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I so agree with the responses below. Maybe brother will care if you are exhausted and just feel ill. The agency you are seeking is called "Adult Protective Services" and every county has one. This is a very difficult situation but really your health will decline rapidly trying to care for him. Does brother have a spouse or children?

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Tallk to him and his Dr about being put on Hospice Care then he can be kept comfortably at home while he dies if that is what he wants.

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.

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Where can you get caregivers for $12 an hour? Who would want someone in their home who will work for that little money?

Visiting Angels was $27 2 years ago. They are backgrounds checked, trained, and insured.

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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.

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Psychiatric evaluation. Depression CAN be treated. If you feel he is a danger to himself (or others) you may be able to get an involuntary admission (depends on your state laws--in Florida it's called a Baker Act). He may not forgive you for that, but if you feel his life is in danger due to depression by doing nothing he WILL die. At least get psychiatry to evaluate his competency.

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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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You may wish to try subliminal recordings without his knowledge.
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/

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It is illegal to use anything subliminal without someone consenting.

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I’m going through this with my 96 year old mother who refuses help and lives at her house by herself. You can’t help someone who won’t help themselves. I tried everything with my mother. She won’t go to assisted living and she doesn’t want people coming in her house to help her. I back off. I don’t live with her. I see her once a week. My mother has her mind and can barely walk. APS can’t help because she has her mind and she CAN walk. Your brother CAN’T walk. He is in a wheel chair. Call APS and tell them you are moving out and can’t take care of him anymore. They should help since he is wheelchair bound. Move out and get APS involved. They should help since he can’t fend for himself because he is in a wheelchair. He could easily live to 100. Your getting older too. Whose going to take care of him when you get older yourself? You can’t take care of him when your 90 years old. Think of the future. Get out of the house now and start over and live your own life. Your brother is not your responsibility. Oh WAIT!!! I just read that you live 45 minutes away and you have a husband. Call APS NOW and tell them you have your own health issues and a husband to take care of and you can’t take care of your brother anymore. He is wheelchair bound so I would think APS would intervene. You can’t help someone who won’t help themselves. Stay out of it so APS can step in.

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Elaine1962, you mentioned that your Mom is 96 and won’t go to AL facility. I have learned that some people, regardless of age, do not want to go to assisted living and have someone telling them when they get a bath and when they eat and what they eat, etc etc. My Dad was one of those. He told the family that he would rather be dead than go to a facility and tried not even calling us for fear that we would try to “put him somewhere”. He had his mind at 89. His heart was failing (congestive heart failure) and he flat stayed right there and pushed his walker around and he would take his own meds now. He would do that. I happened to walk in and caught him struggling to breathe and lying on the bed and I called EMS and he was in hospital 5 days, and sent straight to hospice and died 4 days later. He kept asking me where he was ( type of facility) and I danced around that well enough to keep him from screaming that he wanted to go home. His organs were shutting down. His preference was to die at home. But, he needed desperate 24/7 professional monitoring for comfort and I felt so bad that he could not go home but it was impossible. I told that to say this.....some just want to die at home rather than go to a facility. I did my best those two weeks for him. Mom was a different story. Nursing home for 4 years. Just too much wrong with her but she too begged to “go to her house”. I just ran back and forth since I lived about 4 miles away. Getting old can really suck if you make it to the 80’s and everybody wants the family member in a facility but the patient. So sad. But, there are some that adapt well. I admire them that can just roll with it and feel sorry for the ones who can’t accept it.

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APS in your area is an excellent suggestion. You can also call his local police department non emergency number for a wellness check, they may also get the ball rolling too depending on his situation. Was he a war time veteran honorably discharged? He may be eligible for care thru the va in home care or their skilled medical facilities. This may be another avenue for his wellbeing. The infection could be altering his ability to think clearly about his situation. If he has the beginnings of dementia he probably shouldn't be at home alone, YOU are not responsible for his choices and it sounds as if you really have enough going on at home between your health and caring for your husband with his health problems. Dementia is an ugly monster that removes their stops, and can alter personality traits. It can make them suspicious of everything and everyone. Good luck, I hope you take care of yourself and find him the assistance he needs. Check with senior services center too, they have a vast wealth of resources and contacts that may be able to help him.

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I suggest at least hiring someone for essential daily care, again, at whatever the hours and times for this - and have them report to you, not him. That's what I would do for a close family member...he will accept the help...because he needs it. Expect more argument...but you should not do this yourself, and the worry if he doesn't have help in his condition will also kill your life. You will feel much better knowing he has care available, than not...which is the current state.

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But is the brother paying? He may refuse to pay what they charge and OP will have to pay up out of her own pocket.

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You said on your first reply ‘I am just tired of the immense struggle to keep him alive.’ This is a struggle you are bound to lose. We are all going to die. It will happen no matter what you do (or APS, or amputation, or anything else). Accepting this reality might give you some peace of mind.

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This is the story I lived with my sister who passed away last year at age 59. Was set to have leg amputation from Peripheal artery disease, but had a heart attack. So triple bypass was scheduled first, was sepsis so couldn't do that, so they did the amputation. Kicker is, when she first had leg problems they told her to quit smoking or she was looking at amputation. No way was that happening. Went thru cleaning artery, to stints, to amputation. She suffered greatly with depression but wouldn't admit that. Ended up with stomach cancer. It is stressful to try to help someone who won't help themselves. She just wanted sympathy and for others to do everything else. She was a nightmare to be around, walking on eggshells is no fun. Glad when it was all over for her.

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Imho, perhaps you could speak with his physician. Prayers sent.

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Your brother has some serious medical issues and he should have a leg amputated. He is doing what he wants to do - he wants to die and knows he will without care. He is not longer normal and he wants peace (I can understand completely how he feels and why). Don't fight with him. Honor his space and his desire to be at peace. Support him with kindness and don't try to force him to do what he does not want to do. Let him go in peace. It sounds like he feels it is his time to go.

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Thanks so much for all your replies and the options given. Brother just got out of ICU and is in a hospital room. I was away for weekend and on return things have changed again. Instead of just taking below the knee, they want the entire leg now. His heart ; they are talking about inserting a balloon for the time being and then amputating. I will go today and see what he wants but he has really been against whole leg amputation. I think what he really wants is to just go home and die from his bad heart.

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.

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How can I help my brother best who refuses to care for himself and would rather sit at home to die with no help?

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