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5179324 tn?1364903784

Oxy Withdrawels and End Stage Hep C

PLEASE HELP! My brother is living alone and is very chronic. He refuses to get help or to go to a health care facility for constant help. He uses his Oxy by crushing and snorting it. (I caught him while visiting one day) He runs out quickly and becomes VERY sick. Vomiting, diarrhea, weakness, sleeping to the point he is difficult to wake and seems as though he's in a coma. It bothers us seeing him like this and we all know he's close to the end, but he really needs full time help. He's not eating and, because of his sleeping most of the day, doesn't take the other important medications to help with his hallucinations, and all the things that come with this end stage.

My brother has gone through sever swelling a few times. He is very sickly looking, but the swelling in his feet, ankles, legs and stomach are unbelievable. It's gotten a little better these past couple of weeks. I try to help him as often as I can. My sister usually goes with me. But I really can't handle seeing him go through this and don't know what to do anymore. A few weeks ago I had to clean up after his diarrhea accidents all over his clothes and bathroom. I threw his clothes away and used a lot of bleach in his bathroom.

He's going through it again. He's asking me to come stay with him to help with cooking, cleaning, shopping, etc. I went through all this when I was 18 with my mother. She passed away of cancer. An awful thing to go through so young. Now, with my brother. It's difficult for all of us.

My brother has a son and a daughter who live closer than I do. Neither want to help. His daughter yells at him and his son stays away altogether. He's afraid his two children with catch the illness.

I apologize for my lengthy message but I had to explain the situation. In a nutshell:

My brother is chronically ill, close to death, and needs help. He doesn't want to go to a healthcare facility. What should we do? We live too far away and can't stay with him. We visit every other weekend to shop, clean, do laundry, etc.

He is out of his pain medication and is having severe withdrawals but won't go to the hospital. Should we call 911?

We are all worried and at a loss as to what to do. He can't care for himself. His son and daughter won't answer my calls or text messages. He was in the hospital a few weeks ago. He has internal bleeding but they couldn't find the source of the bleeding. They sent him home, as weak as he was/is, with no help. Just a couple prescriptions for antibiotics which he didn't fill. He was hallucinating, seeing mice running across his floor, bugs on the ceiling, and some animal behind his couch pushing on it. I literally ran to the pharmacy to fill the medication. He was much better after a couple of days. No hallucinations. He's been out of the antibiotics for a few days. I told him to call his doctor to get more. He left a message at the doctor's office but no one returned his call.

Phew, this is crazy. Please, if ANYONE has any input, please feel free to give me some sort of guidance. I would GREATLY appreciate it.
19 Responses
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766573 tn?1365166466
Wow this is really scary. It is difficult to tell what is related to drug withdrawal and what could be due to advanced liver disease. The swelling, bleeding, hallucinations could (*could*) be symptomatic of the severity of his liver disease. I will leave this to one of the more knowledgeable members.

Can your brother make decisions for himself? Is he aware of his surroundings at all? It sounds to me like he needs to be in a hospital and/or see a doctor ASAP. Do you know about what stage of fibrosis he is? One of your tags was "end stage HCV info" Has your brother been diagnosed with End Stage Liver Disease?

His children are afraid they will contract the virus? Hepatitis C is transmitted via blood to blood exchange so I am not sure how 'at risk' his children are. They need to understand that if that is truly the only thing preventing them for helping. On the other hand what were the antibiotics for (???)  It sounds like there is a lot going on with your brother and he needs medical attention. Calling 911 is your decision but (to me) leaving him like that without knowing what is wrong with no way to take care of himself is dangerous.

Having said all that if your brother was much better after you filled the script for his Oxy then I would post on the drug forum and ask for advice. I would not like to suggest an intervention if he really needs an emergency room.


Helpful - 0
766573 tn?1365166466
Wow sorry that last part came out wrong. I definitely think your brother needs medical attention ASAP but it also sounds like he may have an addiction problem so you might get some pointers on the Drug Addiction forum. Being in recovery myself I know what it is like to put alcohol or drugs before your health and family. It is a point of addiction where the person can not readily help themselves.
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Avatar universal
Please call 911. If your brother cannot call, tell 911 you are out of town and he cannot call. If you believe he is non despondent and may die, tell them so. You will be glad you called. He needs help right away. Maybe a social worker or adult protective services can help you. Just make sure the meds he takes are just prescribed to him. Crushing OxyContin and snorting is against their recommendations as I'm sure you know. All you can do is call someone for him since he will not make the call himself. Don't consult him first. Is he in end stage Hep C? Best of luck. Keep us informed.
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Avatar universal
He sounds like he is in crisis and you need to get him to the hospital Now!

I wouldn't be overly concerned about his self medicating now, it is the least of his problem. He needs urgent care now.

Make sure that when he is released  that it is arranged (hospital social worker) that he go into Hospice or a Nursing facility. He is in no position to make this decision for himself at this point.)
Please call 911 or get someone to take him now.
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446474 tn?1446347682
I am sorry that you are his last resort as he has probably used, abused and alienated everyone else at this point due to his addiction. It appears you have already been traumatized by your mothers death and you need to care for yourself first. But you can do both. Help your brother AND care for yourself.

If you brother does not want to live unfortunately there is nothing you can do about it. He is obviously addicted to drugs as he is having withdrawal symptoms so he can't be reasoned with logically. He alone is responsible for  the position he is in. One one because a drug addict over night. This has probably been going on for years or a lifetime. If the fear of death don't give someone a wake up call to change their ways I am afraid nothing else will.

How does he continue to get his drugs when it sounds like he can't even take care of himself? If he is taking them for a doctor's script call the doctor's office and tell them what the situation is the doctor is responsible for their part in this.

Unfortunately it is not uncommon for drug addicts and alcohols to continue using while refusing medical help.  I have seen it many times with liver disease. Without medical help his chances of survival are zero over time. Liver disease only gets worse.

"the swelling in his feet, ankles, legs and stomach are unbelievable"
These are complications of advanced liver disease.

"He's going through it again. He's asking me to come stay with him to help with cooking, cleaning, shopping, etc."
No does not need a baby sitter. He needs medical care you can not provide. He should be taken to hospice or get home hospice care. You can't help him at this point. He is trying to use you to maintain the status quote so he can continue his self destructive addiction. You do not to be part of this. It will haunt you for the rest of your life if you enable him to kill himself.

Since he has what appears to have advanced liver disease if he lives my himself at home even with home care he will die from complication sooner of later when someone isn't there. Many complications from ESLD are fatal is not treated ASAP. He can go into a coma, vomit or defecate blood or get an infection in the fluid build up. All are fatal if not treated quickly. Living by himself is a death sentence. Only hospice can help him.

Depending on the medical insurance he has I would call them and tell them your bother needs hospice care ASAP. That is how you can best help him. Don't expect him to like it. All addicts care about it getting there drug. Think about it. What has he every given to you? Why wasn't he there when your mother died?

After you have gotten him hospice you can leave a message for his kids so they know. Since they are near by they can decide what they want to do.

If you need more help please provide the details of his health coverage and where he is located.

Hang in there. Don't take this all on yourself. If others won't help they will have to live with that for the rest of their lives. That is not something you want to take on. By getting him Hospice care you are doing the best thing for him.
Hector

Helpful - 0
Avatar universal
wow i dont know what to say sorry dosnt seem enough but i agree with all the above i would call 911 and maybe they can make the decision about hospice care instead of you having to take it all on by yourself. Good luck with any discision you make and once again i an truely sorry
Helpful - 0
5179324 tn?1364903784
First, thank you for your input. My brother has had an addictive personality all his life. He was around during the "hippie" days and  the flower child. He has been a recovering alcoholic for years and was doing super with that. But now that he's at the end of his disease, he is back to addiction with his pain medication. In the eyes of the brothers and sisters, we all agreed that it wouldn't do any harm at this point. We would prefer he pass comfortably than to suffer so much pain. But he's at the point where we can't tell the difference between withdrawal and actual disease.  

The antibiotics are to fight bacteria entering into his bloodstream which causes the hallucinations when the infected bacteria enters into the brain. It did help.
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5179324 tn?1364903784
Yes, he is in end stage Hep C. There's not much left to him other than the swelling. He had tried hospice but now they refuse to work with him due to his accusing them of taking his pills. He turns 60 in a couple of days. Hopefully he will be able to get more home help from professionals at that point. I have been spending hours looking for any kind of help I can find for him.
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5179324 tn?1364903784
We think his kids or friends are telling the people at the hospital that they will be staying with my brother to help him. I know my brother has done this in the past with his daughter who, at the time, told the occupational therapist she would be staying with him just so he wouldn't have to go to a nursing home. We were shocked that UMASS would send him home in the state he was in a couple of weeks ago. He was barely strong enough to walk, never mind fending for himself.
Helpful - 0
5179324 tn?1364903784
Yes, I was traumatized with my mother's death. Who wouldn't be at the age I was when she got so sick and died in front of me. I was helping to care for her. But there were about 5 of us helping along with hospice so it wasn't as difficult as it is with my brother. No one wants to clean up after his episodes of diarrhea and vomiting everywhere. I did manage to do it once but I don't think I could do it again. Everyone seems to think it's self inflicted from taking his medications the wrong way.

It's sad that no one answers the phone anymore when he calls because he gives us all the guilt trip for not being able to stay with him to care for him. Or to clean up after him. We are all burnt out. For some reason, his kids won't answer me when I call or text to ask for their help. So sad, it really is.

As far as wanting to live, THAT is what he WANTS to do, even though he knows death is inevitable. He should have died a long time ago, according to all the doctors. They don't understand how he is still with us. As I've stated above, they are baffled. My brother is fearing death. He doesn't know what's "on the other side". Sometimes he cries because he knows he will die one day soon but he's not ready to go.

If his doctor discontinues his pain medication, won't that cause him to feel all the pain he's going through? His insides are rotting from the disease, he's got cancer throughout his body, internal bleeding that the doctors couldn't find the source of,  and there is not much left of a working liver. Yes, the time is near and we would like for it to be as pain free as possible for him.

In one of my replies above, I mentioned that he has had hospice a few months ago. He accused them of taking his medication and now, according to him, they won't help him  because of liability? I will be spending the better part of my day today researching all I can to find whatever help I can find for him.

He has medicare insurance. I'm not sure of which type. He lives in Webster, MA. I've tried calling his doctor to speak with him. They won't tell me anything. Can you believe it? I know the law restricts it but I'm his sister for crying out loud and his kids are pretty much standing back and leaving him to fend for himself. In a way, I don't blame them, but he's not himself at this point and says and does things he wouldn't normally do. Because I've been through it with my mother, my grandfather in law, and now my brother, I know what to expect. They don't. They take everything he says to heart so that now they "hate" him? And there's not much I can do because I don't have the right according to his doctor?

I can't just ignore the fact he is alone with no one to care for him. Some days he is coherent enough to make his own decisions. Most days, especially these past couple of weeks, he's been sleeping. Very difficult to wake him. I'm sure, at this point, he's in and out of a comatose state with all the sleeping he's doing. But I'm also sure he's not taking all his medications the way he should from all the sleeping he's doing. Nor is he eating. I did get him a small apartment size refrigerator to keep next to his couch and filled it with water and Ensure. I also purchased a commode to keep close in case of accidents. But I can't do much more due to being so far away and having my own responsibilities.

If I don't have any rights as to his care, what more can I do?

Thank you so much for all your input. I really, REALLY, appreciate it.
Helpful - 0
5179324 tn?1364903784
I called the Webster EMS to ask their opinion. The person answering the phone was quite rude. He said they can check on him but if he refuses treatment there is nothing they can do and that if I think he's incapable of caring for himself I need to go to court? This is NUTS!
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Avatar universal

"If his doctor discontinues his pain medication, won't that cause him to feel all the pain he's going through? His insides are rotting from the disease, he's got cancer throughout his body, internal bleeding that the doctors couldn't find the source of,  and there is not much left of a working liver. Yes, the time is near and we would like for it to be as pain free as possible for him. "

I understand this concern and actually it may be the one way you can get him hospitalized. If he cannot self medicate, he will go wherever he needs to, to get pain relief.
It is my personal opinion that at this late stage, pain meds are not going to do anything but make his remaining days bearable. However, it should be done in Hospice, not at home, where he cannot get the care he needs.
Good luck to you

I lost my mother to cancer as a child and later my sister. I understand the horror of revisiting the trauma and I am very sorry.
You cannot save him, you can only try to make his last days peaceful and help give his dying a little dignity.
Hospice will help you make this happen. Call them.

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Avatar universal
hi i posted early but want to back what rival as said.I am not a medical person but a chef and 10yrs ago i started working in a hospice as a chef it was a small unit of 30 patients and each day i had contact with patients to see what they wanted to eat if anything i had contact with them 3 times a day, what im trying to say a hospice will make him comfortable and everything is so dignified it was a very calm sedate place both for patients and the family my thoughts are with you all x
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5179324 tn?1364903784
But you can't force someone into hospice. I know they were awesome with my mother's passing, who did so at home. But there were a few of us who took turns with her care. My brother is too far away and has no one. I did receive a voice mail telling me not to try to help him out anymore. He needs 24 hour care at this point. He asked me to stay with him. I can't do that. I won't do that. He is withdrawing and making a mess of himself and his apartment and wants ME to clean up after him? Once was enough for me. I'm not a professional, which he needs.
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Avatar universal
This is hard...there are many of us on the website who are facing end of life decisions.  Hector gave me good advice months ago to get it planned out and put in writing.  I am still working on it because I am still mentally fighting with myself that I am really this ill. ( ESLD Stage 4 on pre-transplant list)  And you are talking to a hippie/flower child of the 70's,,,,life seemed so much easier back then.

Even though I worked for years in the ER as a EMT, I had extreme issues cleaning up or dealing with vomit or diarrhea.... other EMT's  couldn't deal well with the blood and guts so we soon found our niches. At home, if one of my kids got sick their dad would have to clean it up...I just get physically ill. That's why I didn't become a nurse because I knew I could not do the progressive care....loved the ER and would have made a good surgery tech.

My stepfather died in a hospice a few years ago.  He was mortified that his wife and children were having to cleanup after him.  He had a spot on his tongue, was 200# and 9 mos. later he weighed 80#...had no throat, tongue, right jaw, etc. It was awful.  Everyday when I would come he would painfully write on the magic marker board..."help me"  or  "please make them let me go"   or  " no more no more"   and then there was my friends father who had cirrhosis, I'll never forget walking into that small apartment...it was like some one had taken buckets of diarrhea and blood and thrown it helter skelter all over the place.

From those two experiences plus what I saw go through the ER I knew then as I know now, I will fight this disease with all I've got but when I get to the place where I can't take care of myself, they have just got to let me go. I have a DNR.  If it is the end and they want to drug me into a sleep as I say adios to the world, it will be okay with me.  

I read your email and the other posts and am again stricken with how hard these situations are on families...whether you have an addiction or not....it's to late for would of's, could of's....  As for "building character" by taking care of the one who is really ill....cleaning and mopping up dire situations...God bless the ones who can.... .It is just if I am dying, I want my loved ones to remember me in the good times, and not in the bad.

Maybe I am looking at this wrong but you are besides yourself with grief and worry and your hands are so tied unless you have his power of attorney.  It sounds as if his kids are not helping and are a stumbling block to him getting the help he needs.  In the yes of the law unless you are his POA their wishes will push yours aside.

You must make yourself the first priority or you will not be able to take care of or help even yourself, much less anyone else.   It kind of sounds like in his own way your brother knows what's coming and he just wants to face it with least amount of pain he can and in his own way and how he dealt with his life for a very long time.  

Hospice, nursing homes and Medicare are funny...if you are in one of those facilities and you check out there is sometime a waiting period before you can go back in.  Surely the staff would recognize his accusations for what they are...part of his illness.  It probably has more to do with Medicare policies.

The hardest thing I find with all of this at this time is the fatigue. And when you go into the deep sleeps they are like comas....that's the only way to explain them.  You are out.  A semi-truck could be ready to run over me and sometime I can hear people telling me to wake up and my brain might wake up but my eyes won't open and I can't move.  

It is an effort to go to the store, to get scripts, to remember to take them, to fix food to eat, to clean up after yourself.  It is taking all of my energy at this time just to take care of me.  I would like to get back to work for at least a few months but don't know how I could really handle it but will try this summer part-time.  Going to store is hardest.  

He needs oversight on is making sure he has food, that he eats, that he has his scripts, that he takes them, and that he can clean up after him self, personally and if he cooks.  Not saying he should be out there working. Just taking care of daily needs...and if he can not then he may need to be some where they can be met but he will fight it.

It's like my 88 yr old Mom who needs to go into Nursing Care because she has is difficult and has daily living issues...both my brothers would take her in to their homes but she won't because she wants to be "independent".  The only thing she does independently for herself at this point is go to the bathroom.  Everything else needs to be administered to.  She is not independent at this time because she can't be trusted to eat, drink water, take scripts, bath, and move.  She has become her own self made prisoner of her recliner.  The decision is going to be taken out of her hands soon by my brothers for her safety.

Your brother's safety is your priority. You are a very loving sister. Are his kids going to step up or not.  Talk to them.  Does he have a DNR.  Does he have last wishes paperwork.  Even at his age he can be made a ward of the state if he a danger to himself.  

I feel bad for you.....I really do.  But you have brought it home for me and reminded me that I just do not want my kids or brothers to go through this.  You are being very strong, protective, loving and proactive just asking the questions.  You have come to a good website...there are many here who will be able to tell you who and where to contact to see what can be done.  

I wish you the best that it can be...keep posting....I hope you find some peace in your questions and figure out what to do. .Good Luck.
Helpful - 0
317787 tn?1473358451
I am so sorry for what you are going through.  I don't see that you have any choice other than to call adult protective services.  Tell them what is happening.  They will send someone out to evaluate, if they see he is a danger to himself they can take over.
I know they do this in Virginia, I imagine every state is different.  I had to do this for my mother in law.
It is a very hard decision to make however I don't think you have a choice.
Perhaps once they get him stable they can get him into hospice.  
Maybe you could call 911 for him then once he is in hospital get a social worker to evaluate.
Again, I am so very sorry.  Everyone has given you really good advice.
I hope all goes well
Keep in touch
Helpful - 0
5179324 tn?1364903784
Thank you all so much for the input. It's helping greatly.

I did call the EMS directly to ask their opinion. They told me all they can do is check on him. Which they did. They had a difficult time trying to wake my brother but did manage to do so. I guess they didn't think my brother was in any trouble. My brother then called me and yelled at me for calling the police. He said there were 6 police looking around his apartment. I told him I didn't call the police. He told me to contact his daughter if I have a problem with him. Ummmm...she, nor his son, answers their phone when I call or text?

Again, after searching the apartment, and seeing the mess, including vomit and diarrhea, why did they let him stay alone? Actually, after taking all my information, name, phone, etc., they didn't even call me to let me know what they found or thought? What's this world coming to???
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5179324 tn?1364903784
Thank you so much for responding, heart. And I'm so sorry to hear you're going through the same thing. Life is really difficult at times. And my brother has gone through all that you're going through. We would run his errands for him, or take him along just to go for a walk along the beach at the lake. Now, though, he can't even do that. He huffs and puffs. He almost passed out at his friend's wake from lack of oxygen.

He was never the "perfect" brother, nor was he around very much. He is 9 years older than myself. He's been through a lot of bad times but did finally clean himself up. He's so proud of his AA coin and never falling off the wagon. But it did burn out his brain. So he was never really "normal" per se. Quite the dirty old man and always trying to cause trouble in other people's relationships. Because of that, he's lost a lot of friends and most of the family. I, myself, have actually been molested by him when I was 12 years old. But, I've forgiven him. I'm such a sap. lol I've never been comfortable around him alone, though. I've always had to have someone with me when visiting.

Drugs do horrible things to a person's brain. I have two sons, one is 22, the other is going on 21. Both enjoy hanging out with their friends and partying. They've gotten into that K2 stuff, which is a horrible drug they consider a synthetic marijuana. But it does something to them that causes them to be full of anger when they don't have it. I've tried talking to them but they don't listen. I'm so fearful that they will have the same ending as my brother. Or dying at a young age. Neither has much ambition, though my youngest is trying.

Ohhh, I'm going off topic here. I apologize. Sometimes my thoughts wonder.

I truly and sorry to hear you are going through this, too. It's not easy at all. And quite scary if you're afraid to "go". He does have a DNR on the front of his fridge. If only he weren't so afraid to pass on. That's what bothers me the most. His fear of dying and the unknown.
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Avatar universal
Wow Cera....again I echo...take care of yourself first...  As for his kids...they are blocking it and you out.  As a EMT and in old posts you can see on my profile, state the problems with alcohol and drugs....I am no angel...social drinker, stoner....in '96 when I got diagnoised I just stopped. Had to change lifestyle and did.  Was a bartender up to that point, played in a band. My brother always tells everyone to watch coyete ugly to get an idea plus I lived everywhere from NY to the keyes but worked too hard to get on the hard stuff...all though I have seen others do it and wonder how they can maintain.  And until about 2 years ago I'd have an occasional glass of dark red wine but now.....none.  

I have empathy for those who have alcohol and drug problems but I also tell friends and family members there isn't a single thing you can do about it.  Sounds like he was out of control even when you were younger...don't blame you for be leery. You don't want to get hurt.  

I was lucky with all of my kids...I kept them so busy in sports, dance, swimming and gym until they were exhausted and all went off to college...where they didn't do drugs but did drink.  Think my goldie hawn  and age of Aquarius  personality kept them a bit more serious.  My daughter use to describe me in photos to her friends as ... here is a picture of my mom as betty crocker...then she became janice jopplin/stevie nicks and now she has come back and she is all 3.  LOL...

When they were in school I was sec/treasure for peewee/babe ruth baseball (1500 kids) and then the little league football league.  plus I taught dance and gym so they didn't have a chance.  Think they all thought I was a bit crazy so because of me, they became very serious responsible adults....hmmm. They think they are different but they are the same only in a different ways.  I never drank or smoked until I was 27/28 and never when they were present.  I was Mom...crazy long wild blonde hair and all....dressed a bit differently than their friend's moms...  Was 17 when I had my oldest so I kind of grew up with my kids...

Sorry, I digress too... I had alcoholic parents and swore that would never be part of my family life only to find out a few years later that my first husband was an alcoholic and gambler.  His did was an alcoholic and we really didn't know that much about this disease in the 60's,  

...as I got in my 30's and up I met way too many people who had serious drug and alcohol problems.  Learned from Alateen up to AA that there is nothing I can do to change their behavior.  How your brother is acting to you right now is not right but that is how he is going to be and you can't do anything about it.  I don't encourage anyone to turn their backs on some one they love but sometimes as I have found in my life, you just have to distance yourself.  

The sad thing about people who are self destructive is that they leave a lot of people feeling guilty with the "if I only did this" "or that" but if you do what is necessary to protect them they resent you.

As for me, I laughingly tell everyone  I am a Buddhist /Catholic....and throw in a little Joel Osteen and I've got all my bases covered.  I am not afraid to die.  It's the one thing we can be sure we are going to do.  However, I have a Dillion Thomas quote "Do not go gently into that goodnight, Rock, Rock, Rock against the dying of the light".  that is my favorite quote.

But when it's time to go, I will go knowing that I did or tried to do my best.  Many years ago I met Ghandi and the Dali Lama and found eastern spirituality.  Lived in India for about a year and a half and truly feel that I this is just one of many lifetimes for me because I have such a restless soul....I am a wanderer and searcher of light and then on the Catholic side I have hundreds of family and friends I've been waiting to see for many years....so I am at peace even if neither is true and it is all but a puff of dust.....I just don't want to be in pain, I have a high tolerance for pain, but this liver pain can be something else...and I just don't want to be in that much pain..  

Are you okay?  Please take care of yourself....you will need your energy for yourself and your own kids.  Sounds like your brother and his kids have issues that you can't resolve.  Say some prayers for him.  Know that you tried to do the right thing. And are.  That is all you can do.  As for your boys.....keep talking...,so-called friends, TV, media and society affect even the best of kids....but one day, something you or someone who cares says will click.  "click"...it relates to them. Then they think and sometimes it makes sense all of a sudden.

Good luck in dealing with all of this Cera.... will keep you in my thoughts.  

  
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