Author Topic: advice plz - friend has advanced AIDS - when should I tell his family? (Read 11243 times)

jayek · « **on:** January 19, 2013, 10:46:26 pm »

My friend was in serious denial. Found out he was HIV + after losing 1/3 of his weight and suffering from thrush for months. First test results - 16 t cells, viral load 118,000.

He was put on combination of meds, but was already showing some signs of cognitive problems. He wouldn't eat or drink, but said he was. He wanted to be home (he lives alone) and resisted getting a home health attendant. He does not have a lot of friends living around him. He finally fell and couldn't get up and was taken to the hospital. He is not speaking coherently. I'm hoping he gets put into some kind of nursing facility.

He told me not to tell his family unless something "really bad" happened. His family lives far away, he has not kept in touch with most of them except his mother. He never came out to any of them. They are very conservative and religious. His mother is old and he doesn't want to upset her.

I don't know what to do. I feel like this is "really bad" but if he gets put into a nursing facility, I suppose he could get better? I don't think any of them would be able to help at all so I'm not sure what would come from telling them, but I feel like they'll be more upset if he dies and they didn't know.

Any advice?? I appreciate it!

Miss Philicia · « **Reply #1 on:** January 19, 2013, 11:06:45 pm »

I feel like this rises to the level of "very bad" as well and that it's time the family knows what is going on.

jayek · « **Reply #2 on:** January 20, 2013, 12:09:50 am »

thanks. I'm not looking forward to this.

emeraldize · « **Reply #3 on:** January 20, 2013, 09:08:59 am »

Hi Jayek,

I read your fresh post yesterday and was glad Miss P replied. Many things went through my mind and as much as I wanted to write -- I found this an incredibly difficult scenario -- for your friend, his family and you. And, I opted not to write. I know you want more input -- you wouldn't have posted were that not so.

Your friend's setting, not having a close relationship with family nor friends close by and a ravaged immune system, don't bode well for a good outcome.

But life is fascinating -- letting his family know, particularly his mother, might be the key to him rallying.

As with any downfall, physical, emotional or financial -- they have a tendency to feed on the downward swirling trend and it takes definitive action to reverse the trend. You are in the delicate position of being the person who might cause a reversal of some sort -- of course with an unpredictable outcome.

What if, mom learns, wishes to come see him, he is inspired to eat, drink and be medicated, she is enlightened and can, in the face of his desperate situation, set aside conservativism and bias and be what a mom usually is -- a life giver and supporter. Her reaction and action could possibly lead the way for other family members.

And, the opposite could happen.

This couldn't be a whole lot worse so I would roll the dice to initiate change. Your friend gave you permission to make the call of what "really bad" is and such things are subjective.

It helps, I believe, to imagine you are his mother and following his death you learn that he kept secret so much that it led to his death. Would you not feel left out, unloved, untrustworthy and be discovering all of this with the onset of grieving.

Terribly heavy heart I would foresee for her.

In moments of life-threatening health issues, I tend to believe that most who come up to the bedside are not thinking about nor judging someone's sexuality as they are hoping to enable the furtherance of life and share demonstrations of love.

Were I in this situation, I would pick up the phone today. However, if she is within a reasonable driving distance, I would pick up the phone to learn if I could visit and then go in person. Imagine receiving such information on the phone---stunning. No hand to hold, no hug to offer, no eye contact to gauge.

You'll figure it all out and it will be as it should be -- a brave set of actions on behalf of a friend. No template, no net, but as perfect as human interactions go.

Em

jayek · « **Reply #4 on:** January 20, 2013, 01:37:53 pm »

Thanks so much Em for your thoughtful reply.

Of course it is more complicated than I could put in my initial post. HIs mother is actually great - probably the most open and loving of the family, but she is very old, is not able to travel and is reeling from the deaths of 2 other family members just in the past few months. If this was 10 years ago, your positive scenario would have been possible.

I'm trying to figure out why I'm hesitant to make the call. Part of me feels that there isn't anything any of them can do and it will just spread bad feelings and I'll be inundated with questions I don't want to answer. Another part of me thinks if he is put in a hospital and gets better, maybe he wouldn't ever forgive me for telling them and that makes me sad. I made a promise to him and I take that seriously. I know I could say things got really bad so I felt justified, but he might not agree. If I were to ask him right now he would say don't tell them, BUT he is definitely not in his right mind.

I think there is also a little bit of me that doesn't want to get shut out of the situation if the family gets involved. I realize that is wrong and his health is the most important thing.
I think I'm being unrealistic about his getting better, but this is all so sudden and it's hard to get a doctor to give me a prognosis.

anyway, I'm rambling. I'm waiting to hear about his condition today and then I will contact the family.

thanks again for your thoughts

emeraldize · « **Reply #5 on:** January 20, 2013, 05:32:50 pm »

Well, that's actually a relief to know his mom is great. So, is there a way to keep her abreast and not involve everyone else? Would her voice be helpful to your friend? Could you set up a good phone call? Or Skype?

If the family has problems with him, why would they shut you out? Do they know you? Is there some history with them?

All I've got is questions now. I hope you get a good report from the hospital.

WillyWump · « **Reply #6 on:** January 20, 2013, 06:35:16 pm »

I feel for the position you are in Jayek. What an amazing friend you are. Em gave some very good advice.

It's all very tough. But I would say definitely tell his mother now. His condition doesn't sound good right now, and I guess its possible he could pass....and Afterall it would probably be you calling her to inform her of his death so why not tell her now about his situation and let her have a chance to talk to him.

Good luck

hug
-Will

jayek · « **Reply #7 on:** January 20, 2013, 08:16:13 pm »

Thanks Em and Will - I really appreciate the replies.

Em - to answer your questions - and I'm happy to answer more, but might want to do it in private message - his mother & family know me but not well, haven't seen me in a long time, no bad history. I think I want to tell one of his sisters and let her decide about how and when to tell their mother.

I honestly don't know which way it would go if he hears her voice - some deep maternal/son bond that renews his will to live, or complete despair from knowing that his mom is now aware of his situation and the grief it will cause her.

It's not that the family has problems with him, it's that he has problems with them. He has created this distance in years and miles for his own reasons.

He put me on his living will and wanted no life prolonging measures. He trusts me to carry out his wishes, and I think I'm getting that tangled up with the trust he put in me to not tell them. I'm actually certain he would rather they never found out until he actually dies, but he did not specify that and no one involved thinks that is a good thing to do.

Hospital just told me nothing has changed, there's nothing emergent and they're just monitoring him until they can speak with his regular doctor tomorrow. Part of me wants to wait until then, but I might just be procrastinating.

mecch · « **Reply #8 on:** January 20, 2013, 09:32:08 pm »

Maybe there is no 100% correct thing to do.
Why not wait until he is cogent and ask him again.

I'm not convinced about this idea that his mom or his family might help him rally. Seems like he has made his wishes pretty clear.

How old is your friend, may i ask? What he probably needs is very close medical treatment more than anything. Unless you have been told he is dying, why not wait and see how things evolve?

Also, I dunno, but you don't necessarily have to disclose HIV to tell his family that he's very sick. If push comes to shove and you feel like they need to be notified, there is the pretty classic of just staying discrete what you tell them. Then its up to him -- or for them to ferret out the reason for his health crisis, if they feel that its so important to know.

emeraldize · « **Reply #9 on:** January 21, 2013, 11:10:52 am »

Hi Jayek,

Thank you.

I harken back to his instructions to you to let family know if something "really bad" happens. I'm with Miss P who first noted this rises to that definition.

And, I suppose this is one of those Golden Rule issues -- what would you want to have seen done -- in this case, if you were his mom, first and foremost. And, especially since you note she's great and he's orchestrated the alienation.

I like reading that you can confer with one of his sisters. I would not tarry given the most recent hospital update.

If he does not regain any quality of life and independence, then this will be for the living who care for him, you included, to decide moving forward.

You're in a tough spot. I do believe rallying is possible and surprising in the face of family support. At least you can have contact with the sister.

Best of luck,
Em

wolfter · « **Reply #10 on:** January 21, 2013, 12:13:30 pm »

I'll share my experience and hope it sheds some light. I was in my early 20's and had only tested positive a couple of years earlier when I developed AIDS. I had never had the gay discussion with my family and was adamant at the time that I wouldn't.

I was even more determined that they'd never know that I had AIDS. My secret goal was to figure out how to die without them knowing the truth. Unknown to me, the doctor told my partner to contact any family who might want to say their "goodbyes". Most of my organs had shut down and it looked grim.

I don't recall a great deal about that time. But I vividly recall waking and seeing my mother holding my hand and talking to me. She had a lot to accept in a short period and had become my greatest support. Instead of witnessing shame, humiliation and judgmentalness, I received love, support and concern. My brother flew home from Turkey and rallied to my needs.

I was initially upset with Bill but quickly discovered it was a gift beyond belief. I truly believe that my family rallying behind me gave me the strength to fight. I recall one conversation where my mother demanded that I needed to fight and not let the virus win.

What that experience provided me was the ability to recover and finally live a life without shame and fear. To finally believe that I wasn't what deemed myself to be because of my own irrational fears.

As a parent myself, I know that I would want to know and be upset if something so life threatening was withheld from me. Parents have that unique ability to accept and love regardless of situation. I still think back and realize I was selfish with my actions.

I think you need to let both your heart and mind guide you. As long as your actions are pure and done with your friend's best interest in mind, you'll make the correct decision.

Best wishes! Your friend is quite lucky to have a great friend!

Wolfie

emeraldize · « **Reply #11 on:** January 21, 2013, 04:06:04 pm »

Wolfie -- That is a great illustration of the potential for positive impact by family and the want of a patient to rally.

Miss Philicia · « **Reply #12 on:** January 21, 2013, 04:36:03 pm »

Clutch the pearls -- wolfie has a child?

Jeff G · « **Reply #13 on:** January 21, 2013, 04:55:33 pm »

Quote from: Miss Philicia on January 21, 2013, 04:36:03 pm

Clutch the pearls -- wolfie has a child?

I hope he didn't get those stretch marks .

wolfter · « **Reply #14 on:** January 21, 2013, 05:05:41 pm »

Quote from: jg1962 on January 21, 2013, 04:55:33 pm

I hope he didn't get those stretch marks .

Quote from: Miss Philicia on January 21, 2013, 04:36:03 pm

Clutch the pearls -- wolfie has a child?

Why do you guys always have to be such snarky little bitches?

Haven't we also had the discussion about parenthood in these here forums b4?

Sorry to the original poster for going off track.

wolfie

jayek · « **Reply #15 on:** January 21, 2013, 07:29:23 pm »

mecch - I'm not convinced they can help, but that isn't really the point. And I agree that what he needs is very close medical treatment. Unfortunately his prognosis is not good, maybe not this week, but he is not doing well. And his dementia seems to be progressing. Also - I plan on telling them the doctor can give them details if they ask for more info on his illness.

Great story Wolfter - thank you.

I have children too and can't imagine ever having this type of situation, but would always be accepting and want to care for them.

I think underlying all of this is my sadness and frustration about how he let this get so far without doing anything about it, and continues to be resist doing anything to get better. At this point though he doesn't fully understand what he is doing.

ImisstheOldTimes · « **Reply #16 on:** January 23, 2013, 03:46:33 pm »

Jayek,

Your friend unfortunately sounds like my father, it was scary how delusional he got. I was hoping it was the morphine but now believe to be an OI called streptococcal menegitis

Sadly it's been almost a year since his death, I agree with Miss P and Em. Best to make mom aware, in my humble opinion.

Imiss

ImisstheOldTimes · « **Reply #17 on:** January 23, 2013, 03:53:18 pm »

Sorry make that cryptococcal menegitis

mecch · « **Reply #18 on:** January 23, 2013, 05:14:20 pm »

Quote from: jayek on January 21, 2013, 07:29:23 pm

Unfortunately his prognosis is not good, maybe not this week, but he is not doing well.

You are saying he is dying soon? How sad.
So, what have you decided to do?

wolfter · « **Reply #19 on:** January 24, 2013, 01:40:41 pm »

Quote from: ImisstheOldTimes on January 23, 2013, 03:46:33 pm

Your friend unfortunately sounds like my father, it was scary how delusional he got. I was hoping it was the morphine but now believe to be an OI called cryptococcal menegitis

Curious why you now think it was cryptococcal meningitis that your father was suffering from?

jayek · « **Reply #20 on:** January 25, 2013, 12:50:17 am »

Quote from: mecch on January 23, 2013, 05:14:20 pm

You are saying he is dying soon? How sad.

I have no idea if he is dying soon. I don't think anyone does. What I do know is he is severely malnourished and underweight, has at least one OI, dangerously low blood pressure, can hardly walk, confusion - dementia? I don't know. His teeth look awful, sores on his body. And I know that he isn't doing anything to get better, except for taking his meds.

I think at this point, he would have to be doing everything right to recover from this. Can a body just come back from damage this extreme? I guess it's possible - and I'm hoping it is, but I'm having trouble imagining it.

I got ahold of his sister. She is handling it well and deciding what to do moving forward. She was very grateful that I told her. Now she has the burden of when to tell their mother and the rest of the family.

emeraldize · « **Reply #21 on:** January 25, 2013, 07:41:17 am »

Hi Jayek,

Good to learn you were able to reach his sister and that it went well. It must be a true relief for you to have someone else know and that she can be the bridge to his family.

From stories told within these forums and elsewhere there is proof miraculous recoveries have occurred. The "taking his meds" part is key to the climb back -- one's will and support has much to do with it, too.

He certainly has support from you.

Em

wolfter · « **Reply #22 on:** January 25, 2013, 08:10:37 am »

You indicate he has at least one OI. Are the doctors not sure? What tests have been performed? Some OI's can cause the exact symptoms you describe.

It'd be premature for me to suggest any particular OI, but all of his symptoms describe my exact condition with my last hospitalization.

Sending positive energy to you both.

Wolfie

ImisstheOldTimes · « **Reply #23 on:** January 25, 2013, 03:07:16 pm »

Wolfie,

He went into the hospital with PCP, (which he was treated for and seemed to get better)they later diagnosed him with aspergillosis, and histoplasmosis - which is what the doctor said killed him. Researching these last two didn't seemto show the dilusional symptoms he was having, he acted insane, and I saw that the Cryptoccal menegitis had the more likely symptoms... I may be wrong, but it fits with what I saw going on. His AIDS was never treated, he was too weak upon entry to start ARVs, and soon passed away.

ImisstheOldTimes · « **Reply #24 on:** January 25, 2013, 03:46:49 pm »

Jayek,

I'm glad were able to reach his family too

SurferJosh · « **Reply #25 on:** January 27, 2013, 10:42:50 pm »

Since the family already knows, it may be a moot point, but you can always say "your son is hospitalized and you should come visit" without feeling obligated to provide a diagnosis.

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Author Topic: advice plz - friend has advanced AIDS - when should I tell his family? (Read 11243 times)