POZ Community Forums
Main Forums => Someone I Care About Has HIV => Topic started by: JakeMeyer on April 05, 2014, 02:38:30 am
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Hi everyone, my name is Jake and I really need some advice on how to handle a situation with my family. I just found out today that my older brother who is 26 has AIDS. He was originally diagnosed with HIV last November and has been getting progressively more sick everyday. His doctors told him that he probably has two to four years left to live due to the ineffective medicine regimens that they keep trying that aren't working. I'm the only one in my family who really talks to him; I have a very closed-minded, very conservative family that have treated him terribly in the past, and he asked me not to tell our parents that he's this sick, because they judged him so harshly when he came out. I understand why he does't want me to tell anyone, but I want to make sure he's taken care of if he gets really sick and I feel like I can't do that by myself. He lives in San Francisco and my family lives in the midwest, I'm 17 so I don't really have enough money to go visit him often, and I think that if my parents knew they would at least want to make sure he's taken care of. I want to respect his decision not to tell our family, but I also want him to have someone there if he needs us. I don't know what to do. Does anyone have any advice? Thanks.
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Do not disclose another person's status, ever, for any reason, not even the dearest family.
I can't believe that any modern doctor would give that kind of prognosis. Especially in SFO.
For your own peace of mind, this virus, and the disease, are manageable.
Read the lessons here, keep asking questions in this thread. Educate yourself from reliable sources.
Are you sure he is full blown AIDS? There is a difference. Untreated HIV virus, causes the disease AIDS. A positive person can live a lifetime on ARVs and never develop AIDS. And someone with AIDS, can live just as long.
This is not a death sentence. But your brother has a hard fight ahead.
Again, DO NOT DISCLOSE. Resist every temptation.
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Jake, listen to what Zach says.
There is something not right about the story you relate here. No 26 year old, pretty much anyway in the world, and certainly San Francisco, is going to get a "2 to 4 year prognosis". There is the possibility that he is in the hospital now, and definitely dying, now, of some related infection or cancer, etc. IF that is the case, he won't last 4 years. Otherwise, no matter the state of his immune system now, doctors will give him some hope that effective treatment will reverse the damage and would never tell him "2 to 4 years".
Something is missing. Perhaps he isn't dealing well with the diagnosis and is mangling the information that he presents to you.
Or something has been misunderstood. Perhaps he has heard that his untreated HIV is not going well, and unless he finds and sticks to an effective combination, he won't do well. There are people who, for their own reasons, are not able to stick to treatment. That doesn't mean there are no effective treatments. It means the person, for whatever reason, is unable to take the pills consistently. You might want to gently inquire if that is the case, for your brother.
If the issue is "adherence" to treatment, the challenge could be any combination of: depression, helplessness, lifestyle, money, political and philosophical beliefs. (There's a small group of people, including in SF, who believe that HIV treatment is poison, a business conspiracy, and/or that HIV doesn't kill.)
There are many many different combination of pills available. It is difficult to believe there is no effective treatment for your brother. Something is wrong in the information chain.
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As for telling people. Don't.
Doesn't he have any support in SF. He's a loner?
Suggest to him to join the Forum...
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Welcome to the Forum Jake . The others have given you some very good advice . I would like to add if it turns out that your brother is as ill as reported then you should find comfort knowing that San Francisco has excellent hospice care for people who are terminally ill .
If it comes to it your brother will be cared for with just a little bit of planning . I'm wishing you the best .
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Thanks for the advice everyone. All I know is that his CD4 cell count is down to 2 and one of his medicine regimens intensified a heart infection that he developed since November. I guess he had to stop taking his meds just because he kept having really serious heart problems? He has a boyfriend so he's not really alone. I guess as his brother though, I kinda want to take care of him. I'll make sure not to disclose his status to anyone though, I wasn't really sure of the right thing to do. Thanks.
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Thanks for the advice everyone. All I know is that his CD4 cell count is down to 2 and one of his medicine regimens intensified a heart infection that he developed since November. I guess he had to stop taking his meds just because he kept having really serious heart problems? He has a boyfriend so he's not really alone. I guess as his brother though, I kinda want to take care of him. I'll make sure not to disclose his status to anyone though, I wasn't really sure of the right thing to do. Thanks.
I hope your brother pulls through, you both will be in my thoughts . You know your family situation better than we could possibly know but if you feel your parents are capable of offering love and support then you may could talk to your brother again and ask for permission to talk to them about it . We are all hoping he pulls through and recovers but if not it would be a shame if they all didn't have an opportunity to make amends in the end . Its your brothers decision to make so I would honor whatever his wishes are .
Best to you and your family .
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I hope your brother pulls through, you both will be in my thoughts . You know your family situation better than we could possibly know but if you feel your parents are capable of offering love and support then you may could talk to your brother again and ask for permission to talk to them about it . We are all hoping he pulls through and recovers but if not it would be a shame if they all didn't have an opportunity to make amends in the end . Its your brothers decision to make so I would honor whatever his wishes are .
Best to you and your family .
Thank you very much Jeff. That really, really means a lot.
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I am so sorry to hear how serious this is. Do you talk on the phone? Email? I have no expertise and it seems very worrying that a person with a CD4 of 2 isn't on antivirals. He has myrocarditis? How is he being treated - in hospital? At home? Is he getting good medical care, do you think?
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Good luck man. Hoping all the best for him. If he is as sick as he sounds, I hope he is in hospital right now.
Jeff is right. Talk to your brother again. Try to get him to feel the love, not judgment or confrontation.
And hey, you keep your head up too. Hold fast.
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I want to give you some hope too. We have this thing called the Lazarus Effect. Named for the bible story. They can truly pull us back from deaths door, and we can recover good health.
You've already shown great strength. This is a lot of weight at your age.
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I am so sorry to hear how serious this is. Do you talk on the phone? Email? I have no expertise and it seems very worrying that a person with a CD4 of 2 isn't on antivirals. He has myrocarditis? How is he being treated - in hospital? At home? Is he getting good medical care, do you think?
Thanks so much. Yeah, his boyfriend is being really nice and keeping me updated on everything, I guess he has myrocarditis and pericarditis now too. He's been unconscious in the hospital for a few days, I really hope that he's getting the best treatments possible, I guess the hospital's the safest place to be at least.
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I want to give you some hope too. We have this thing called the Lazarus Effect. Named for the bible story. They can truly pull us back from deaths door, and we can recover good health.
You've already shown great strength. This is a lot of weight at your age.
Thanks so much Zach, that really means a lot to hear that. Thanks for the support.
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Jake, I wish your brother and you the best! x
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Hope your brother recovers when I got diagnosed in july I also had cd4 of 2, heart murrmer, pcp pneumonia, stomic infection, vomiting, diarrhea, and went from 210 to 130 pounds in 2 months, they said I wouldnt have made it another month but im here almost a year later and feel great. Hope your brother will make a full recovery it is possible I will pray for him
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Do not disclose another person's status, ever, for any reason, not even the dearest family.
Again, DO NOT DISCLOSE. Resist every temptation.
Jake it's your right to disclose what's happening to anyone you choose. Ignore the selfish advice you are hearing from others on this forum. They are not thinking about your best needs, but are instead focused exclusively on your brother's privacy and maintaining their zealous notion that HIV should be kept secret the way cancer was in the 1950s. You are very young and have been put in an extremely difficult position. Don't let your brother's privacy come at the expense of your own well being. This secret is a terrible burden and it might eat away at you. I know because I have been in your situation with my own brother. When I first joined this forum I was struggling with similar issues. I was confused and angry and I grew to resent the lying and covering up that was expected of me to hide my brother's dangerous drug use, HIV, and hospitalizations.
Your family might have a change of heart if they learn the truth. Bedside "conversions" of hardened parents are common and I think you will feel better about yourself for trying to get your parents and brother to reconcile. You might fail, but at least you will have tried. There's a weird martyr aspect to this unfair deception you're being asked to participate in... If your brother's condition worsens your family will eventually find out. They might resent you for hiding the truth, notwithstanding their past close-minded behavior. You might face anger from your brother for disclosing but unlike the melodramatic admonitions, it might not be the worst thing in the world. Consider if this will be worse than having to deal with the situation alone.
The game changers in your situation are your age and the fact that your brother is so seriously sick. If his HIV was responding to medicine or you were older and financially independent, then maybe keeping his secret would be appropriate. But this situation is not something you seem able or should be expected to bear alone. Maybe there is an adult family friend who your parents respect and trust-- someone with a social work, medical, counseling, pastoral background etc. Speak to that person and develop a plan to jointly share the news with your parents. You know what makes the most sense in your family. Becoming an adult means learning to deal with tough situations. Sometimes you need to do the right thing even if it means unpopular choices in the face of naysayers. Good luck and stay strong.
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josh, you have a choice here. listen to the advice of people that are living this, every day, or someone that is not. some of the people that have posted here are long term survivors, consider their words with the weight that brings. i would encourage you to read back through some of our posts, to get a feel for where we are coming from. in some cases, i believe you will easily find that some here have a disclosure agenda that they don't fully appreciate the consequences of. i can tell you from first hand experience, as someone that has been at the center of it. family disclosure can be an extremely painful and damaging thing.
but i do feel as sick as your brother seems to be, there are alternatives to you simply disclosing. involve professionals, let them help. they will be governed by hipaa and respect privacy. speak to your brother from the heart, try to help him reach a point where he wants to share with family in his own way, in his own time.
i am viscerally opposed to anothers posters philosophies on disclosure, i have noticed his agenda before, and i do not like what he is pushing. it is the patients right to make that decision, period.
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SurferJosh
The OP loves his brother. The OP should take care of himself, and respect his brother's wishes. Its a sad situation. The brother was treated horribly by the parents. The brother's wishes need to be respected. Its pretty obvious. The brother gets to make the rules. If the brother dies, its terribly sad for his boyfriend, for our poster. Maybe for the parents. Probably for the parents. But they had a LIFELONG chance to love their son and blew it royally. Why on earth are their needs very high on the agenda. The OP can get support here, from his brother, from his brothers bf, from professionals. The OP can, in my opinion, discuss it with his own, very close friends, away from his family's knowledge. The sick HIV+ person doesn't want his failed parents to know. Done deal.
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Jake it's your right to disclose what's happening to anyone you choose. Ignore the selfish advice you are hearing from others on this forum. They are not thinking about your best needs, but are instead focused exclusively on your brother's privacy and maintaining their zealous notion that HIV should be kept secret the way cancer was in the 1950s. You are very young and have been put in an extremely difficult position. Don't let your brother's privacy come at the expense of your own well being. This secret is a terrible burden and it might eat away at you. I know because I have been in your situation with my own brother. When I first joined this forum I was struggling with similar issues. I was confused and angry and I grew to resent the lying and covering up that was expected of me to hide my brother's dangerous drug use, HIV, and hospitalizations.
Your family might have a change of heart if they learn the truth. Bedside "conversions" of hardened parents are common and I think you will feel better about yourself for trying to get your parents and brother to reconcile. You might fail, but at least you will have tried. There's a weird martyr aspect to this unfair deception you're being asked to participate in... If your brother's condition worsens your family will eventually find out. They might resent you for hiding the truth, notwithstanding their past close-minded behavior. You might face anger from your brother for disclosing but unlike the melodramatic admonitions, it might not be the worst thing in the world. Consider if this will be worse than having to deal with the situation alone.
The game changers in your situation are your age and the fact that your brother is so seriously sick. If his HIV was responding to medicine or you were older and financially independent, then maybe keeping his secret would be appropriate. But this situation is not something you seem able or should be expected to bear alone. Maybe there is an adult family friend who your parents respect and trust-- someone with a social work, medical, counseling, pastoral background etc. Speak to that person and develop a plan to jointly share the news with your parents. You know what makes the most sense in your family. Becoming an adult means learning to deal with tough situations. Sometimes you need to do the right thing even if it means unpopular choices in the face of naysayers. Good luck and stay strong.
How very fucking dare you say that our advice is selfish . I have lived openly with HIV for over 30 years and have always held the opinion that a person should be open an honest about HIV WHEN EVER possible and IF that is what they choose . We do what we do here to not only offer support but also to prevent infections and selfish people do not work this hard and in earnest because we are selfish . Its not just us moderators I'm talking about either, the mods are a very small part of what goes on here . Its the members who make this forum what it is and not one single forum member stuck around for selfish reasons, they spend hours everyday reaching out to help and educate people on how to lead good lives despite HIV and I wont let you dishonor that .
Some of us have been helping people with HIV for years on end and you come in with a chip on your shoulder and label us selfish, its an insult . You had your say but do not think for one moment it carries any weight around here . You are welcome to post but you will not come here and insult us again and get away with it .
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Damn where's the like button for Jeff's comment. Thank you moderators!
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:)
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Jake it's your right to disclose what's happening to anyone you choose. Ignore the selfish advice you are hearing from others on this forum. They are not thinking about your best needs, but are instead focused exclusively on your brother's privacy and maintaining their zealous notion that HIV should be kept secret the way cancer was in the 1950s. You are very young and have been put in an extremely difficult position. Don't let your brother's privacy come at the expense of your own well being. This secret is a terrible burden and it might eat away at you. I know because I have been in your situation with my own brother. When I first joined this forum I was struggling with similar issues. I was confused and angry and I grew to resent the lying and covering up that was expected of me to hide my brother's dangerous drug use, HIV, and hospitalizations.
Your family might have a change of heart if they learn the truth. Bedside "conversions" of hardened parents are common and I think you will feel better about yourself for trying to get your parents and brother to reconcile. You might fail, but at least you will have tried. There's a weird martyr aspect to this unfair deception you're being asked to participate in... If your brother's condition worsens your family will eventually find out. They might resent you for hiding the truth, notwithstanding their past close-minded behavior. You might face anger from your brother for disclosing but unlike the melodramatic admonitions, it might not be the worst thing in the world. Consider if this will be worse than having to deal with the situation alone.
The game changers in your situation are your age and the fact that your brother is so seriously sick. If his HIV was responding to medicine or you were older and financially independent, then maybe keeping his secret would be appropriate. But this situation is not something you seem able or should be expected to bear alone. Maybe there is an adult family friend who your parents respect and trust-- someone with a social work, medical, counseling, pastoral background etc. Speak to that person and develop a plan to jointly share the news with your parents. You know what makes the most sense in your family. Becoming an adult means learning to deal with tough situations. Sometimes you need to do the right thing even if it means unpopular choices in the face of naysayers. Good luck and stay strong.
You are very fortunate that Jeff commented first, as I would not have been so polite. I know you, with your hidden agenda, because I have seen people like you for decades. You are simply unable to respect the rights of others and you justify horrible betrayals of trust, just to make YOUR life easier. Nobody and I mean nobody has the right to disclose the status of another, no matter what self-centered justification you think is appropriate.
You also have no idea of what it is to live with HIV and the stigma and pain it can cause in families. It would never be the OPs right to disclose his brothers status, unless specifically permitted to do so. His brother wants this kept from their parents... so end of discussion.
What disgusts me the most however, is your projecting your own experience regarding your brother's drug use, HIV and hospitalizations onto the OP. Since you had a rough go of it, the OP should simply ignore his brothers wishes and disclose his status because...? You betray your own emotions with your shallow argument and if you think our advice is so selfish, may I suggest you find another forum, as your negative and insulting tone has no place here.
You claim that being an adult means learning to deal with tough situations, but you believe that since some situations are just too tough for you, that betraying the trust of someone close to you is fine. Being an adult, means facing tough situations and honoring your word when asked not to do something by someone close. Being an adult means you do the right thing, no matter how hard it is, because the thought of betraying someones confidence would shatter your character.
That is what adults do.
Joe
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Disclosure is a tricky thing and everyone has their own views which is perfectly acceptable. It's is NEVER acceptable to degrade others for their views.
I hope the OP's thread doesn't become usurped. He is in a precarious situation and probably dealing with a lot of stress. I'm sure he appreciates different perspectives, but will benefit zilch is the tone of their thread becomes testy.
wolfie
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We have all had our say so lets not hijack this thread any further as Greg suggested . Josh ... if you wish to continue discussing the finer points of disclosure then return to your original thread to do it .
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my last post i made an error in names. i was not speaking to josh, but to jake. the choice i talked about, is yours jake. i truly hope you make the right one.
the rest of what i just wrote was before jeff asked to take it to josh's thread, so i will... its coming josh, and its going to get personal
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Jake, how is your brother doing? any news? and take care of yourself too man.
...And regarding Josh...well...I won't waste a second of my time writing how awful his advice is, don't even consider it Jake.
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Hi, Jake,
Hope your brother is at the very least managing. Sounds like you mean well and want to be as supportive as you can. So far, I've found this approach helpful in working with people going through lows in life.
http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407
I want to give 2 points:
Trust: Your brother has placed a serious amount of trust in you by disclosing to you. Please don't ever violate that.
Wishes: And in the medical setting, workers are bound by HIPAA for confidentiality - intended to maintain trust. While you are not, family members are still asked to put the patient's wishes - what the patient wants for his/her medical issues when in his/her right mind - first. Not their own. This includes privacy choices. Please keep that in mind.
I have been on all sides. When a family member decides something against a patient's sane wishes, it never ends well.
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There's a very touching passage in Sean Strub's new book that shows how he struggled with this very decision and found a middle ground approach that allowed him in his mind to honor a request not to tell family, without having to be chained to an unbearable secret:
"I had respected Michael’s wish that I not notify his family of his hospitalization, but when he lost consciousness, I phoned them and said he had cryptococcal meningitis, without mentioning AIDS, and that I thought he would be released in a couple of days. Though his mother wanted to visit, I told her that he had pleaded not to have anyone visit him. “That’s Michael,” she said, with resignation in her voice, “but will you call me every day to let know how he is doing?” I promised I would."
Sean made the right choice for himself and Michael's family. Re-reading this passage solidified in my mind the importance of the caregiver balancing all factors and like Sean, making your own thoughtful decision.
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Its not hard to find others who can agree with you no matter your position on any issue so forgive me for not being too impressed with your sleuthing ability's .
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i think he's already done it, or if he did take the higher path, resurrecting this thread only tempts him again
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Josh, there's a huge difference between now and when Michael died. We all struggled with the decisions then as death was eminent for many. And that middle ground wouldn't work today.
As soon as you tell someone that a person has cryptococcal meningitis, it's not a huge leap to figure out it's AIDS.
Another point that I'd address is that Sean lied to his partner's mother. Is it best to tell partial truths and partial lies than be completely honest? No one leaves the hospital after a couple of days with this OI and I wonder how pissed Michael's family was that they were lied to?