his secret burden

[tiffany]

Hello, I don't know where to begin so I will just start. We (my husband and I) have known about my father in law's lifestyle for several years now. It has always been kind of swept under the carpet as his mother acts like she is oblivious to it. Late friday, he was admitted to the hospital with pneumonia and were told they were doing extensive bloodwork. In the back of my mind I suspected HIV but never seriously considered it. On Sunday he was put on a ventilator as it was too exhausting to breathe on his own. On Monday we went in to see him and I was surprised at the lack of tenderness my mother in law showed for her husband of over 35 years. I sat down next to him and touched his arm, he awoke and tried to talk, I gently told him just to breathe and that I was just there to comfort him. My husband looked at me strangely like it was odd I would be touching him. An hour passed and I was holding his hand. I just felt that he needed some kind of human touch that was not just clinical. My mother in law was ready to leave and my husband asked if I was ready to go. At that point my father in law grabbed my hand and there was no way I could leave. I knew he was scared and wanted to give as much comfort as I could. Later that night when my hus went back with his sis, the nurse slipped and disclosed this was HIV pneumonia. My sis in law, didn't really understand and said 'this is the pneumonia that HIV patients get?' and the nurse stopped her and said no, he has the HIV and the pneumonia is an effect of that. After the shock wore off and their father confirmed it by knodding. My husband and sis in law decided they were not going to mention it to my mother  in law. So this huge secret remains. My mother in law refuses to even acknowledge to herself what is going on and we can't figure out who she is really trying to protect. The doc called the next day and when she realized we knew she advised that this is an AIDS defining illness. I have been googling for the last couple of days but I don't really know what to look for. The doc seems to think he will come out of this but what happens next. Is there a so-called laundry list to be checked off as his condition deteriorates? My father in law is the only father figure I have known in the last 12 years and I love him regardless. But I need to be strong for my husband if we get another 'call' and I need to know what to expect so I can deal with it on my own before he has to. More than anything I would like to have that conversation with my father in law to discuss this. I don't know how long this secret has been riding his shoulders or if he was just recently diagnosed. Where do we go from this point? My husband and I live 12 hours away from our family and we will no doubt make that drive when something like this happens again. But is there anyway to know from his condition now how fast this progresses? It does not help that he is a diabetic or that he is nearly 60 so I don't really know how grim this truly is......

I don't want to offend anyone that reads this but right now my struggle is, with all the knowledge that we have of prevention and protection it seems like some partner of his was careless with the protection aspect. Is that insensitive or is that a normal reaction to just finding out?

[Willy50]

Tiffany; there is nothing to apologise about.  It had to be a very emotional and upsetting experience.  It is hard to see people suffer.  It is hard to experience peoples inability to be able to rise to the occasion and give sick people some love, support, and understanding.  He is lucky that you were there for him in what must have been both a scarey and disheartening experience.  It's sad, but many of us just don't know how to respond in emergencies like this.  It sounds as if what he experienced, and what you witnessed was fear, anger, shame, and perhaps a strong desire to not confront the reality of what was happening.  

I do not have HIV.  I am just "on loan" from the sister Hepatitis C board.    So I am not really an experienced HIV/ AIDS guy.  I do have some experince in having a disease that has negative stigma.  Many of us HCV infected end up keeping it secret also so that we can be treated normally...... or we can be employed...... or NOT judged....... or so our children are not punished for our disease.  I can tell you that meeting a kind soul like yourself is a real blessing.  Your father in law is very forunate to have someone in his family that is compassionate.

So far as what should you do.........  My sense is that there is no one "right" thing that will work for all families.  In this case, you have the right to treat him as you desire.  Perhaps his other family just does not know how to properly respond.  I also believe that people have the "right" to respond in their own time.  Some people may not be able to "deal" and so withdrawl.  We ultimately are responsible only for our own actions.

I hope the doctors can help him pull through.  Now that this is more out in the open the issues can start to be worked on.  

Thanks for writing, and take care.

Best,
Willy