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Author Topic: How to deal with a loved one who passes away from aids  (Read 4333 times)

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Offline lostmyangel

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How to deal with a loved one who passes away from aids
« on: November 29, 2010, 11:18:21 AM »
Hello everyone I will start off by saying this maybe a long post for I am going through many emotioons at this time so please if you have time read my story and respond with yor support questions or comments.
I recently found out my mother had aids which is not such a big deal right? wrong my mother past away last month I or anyone had the slightest clue about her been positive I stayed with her untill her last breath and she did not say one word I guess I want to know why?After going through her belongings the pieces to the puzzle started to fit my mother contracted the virus from my step dad who died in 95 she did not know he was positive untill she got his death cetificate. Thats what makes me upset he knew he was positive and did not tell her and yes I know he knew because I vewied his medical reords and there were notes written by doctors stating he said he did not know but frequently went to the hospital and denied it evey time the doctors encouraged him to tell his spouse my mother and the coward never said anything thus giving my mother the death sentence. I have no respect for him at all and if he was still alive I would have him put in jail for knowinlgly giving her the virus how could some one do that she was a mother of 4 children I was her youngest Im 25 years old know andyes I feel like I was robbed from knowing my mother. I say this because my mother went into a deep depression after she found out about her being positive she stopped going out side in day light she moved out of stated tried to change her name and lived in fear and shame for about 20 years. She was a good woman went to chruch very intellegent did not smoke, drink, or do drugs as far as my step dad he was horrible I remember him being an abusive drunk and  at the time I was to young to know but I foundout he did herion and had multiple partners feel sorry for any other children that lost their mothers because of him because he did not care about his self or others. Istill dont understand why my mother would even date such a loser maybe she did notsee the red flags. I still don't understand why she dd no disclose hr status to anyone the fact of the matter is sheknew she was dying because she madethese arrangements that only people who knowthere isnt much time make. Im lost because she was always so private so when she decided to check in the hospital and not let anyone know (thanks to hippa) what exactly was wrong I did not think much of it I knew shew she checked in but had no clue she would not be checking out. I feel so bad because she lived with me for years and how could I not know guess i did not see the red flags either maybe I thought on the static side of aids homosexuals, drug users and prostitutes im just at total shock because because I would of never guessed tat she was positive. I understand herbeing shamful and scared I d feel as loving as our family is we would have not treated her any diffrent we could of helped her more than hurt her her but she was just so afraid she was tried to hide it from doctors thats where the name change came into play. So know I am stuck looking for answers seeking closer and its not a good place to be I find myself depressed at imes angry at my step father my mother and myself. I d encourage people who do have the virus to speak with your loved ones getthem prepared fo a day that will come because there is no cure and untill there is you will pass away but i feel betterfor everyone t be prepared instead of deception, instead of one day your happy and look healty and the nextday your in the hospital an know one can undrstands why then your transfred to a hospice and you find out when its to late so you can tel that person its okay theres nothingto be shamful aout i love you reguardless I ca help you thrugh your journey. Ialso encourage those that knowingly spread the virus t please stop because your not only hurting the ones you infect you hurt their famlies their children thier grandchildren. Its ver sad because I feel my mother died the day she found out back in 95 so half my life she was her illness  I didnt get to enjoy who she really was because every thing she di in life surronded her illness. I am very proud of her because I know she did the best she couldan she was cellabant because she was a good woman she dd not want anyone to suffer what she ou her kidswent through.

Offline ElZorro

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  • Posts: 535
Re: How to deal with a loved one who passes away from aids
« Reply #1 on: November 29, 2010, 11:27:51 AM »
 :'( I am so very sorry to hear about your loss. I dread the day that I have to deal with the loss of my mother or father and I think it's even harder for one as young as yourself.

As to why she didn't tell you? Of course, no one has that answer, but I can tell you why I have not told my son (who is your age) and have no plans to tell him.  The biggest reason is because there is absolutely nothing my son can do about it and all he will do is to worry about his father. I don't want to place that sort of burden on him. Instead, I want him to live his life as happily as he can knowing that, as he gets older, he will have to deal with his own drama. Me adding unnecessary drama would not serve any valuable purpose.

If you have a few minutes, I'd recommend breaking your original post up into multiple paragraphs (use the modify button). Internet pages being what they are, it can be a bit difficult to read such a long post without the reader losing his place.  ;)

All the best of hope for you as you work through your grief.

~ Z

Offline lostmyangel

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Re: How to deal with a loved one who passes away from aids
« Reply #2 on: November 29, 2010, 01:32:25 PM »
Thanks for your response and sorry about the way I wrote my blog first time posting and cant figure out how to edit it. Your reasons for not telling your son is very like my mother she never wanted to be a burden on or to anyone so that makes a lot of sense.

Although I do feel as her child at some point in my life she should have told me something maybe she could have said she had cancer or she was terminally ill if she feared of been judged. I really don't feel her illness would have been a burden I feel I would of understood her better you know when your 13 years old and your mother doesn't take you anywhere or do the things like your friends parents do or she doesn't show up to your basketball games you feel as if ohh my mom doesn't care or she is been mean it never crosses your mind she has a serious illness.

So I do believe if there was a conversation to let me know hunny I'm seriously ill are relationship could have been so much stronger. I think you should tell your son before its to late because it did not hurt me to find out my mother had aids what hurt me the most was to find out she kept such a secret for 20+ years and it tore her up inside she lived in fear of anyone finding out she let the illness control who she was or could have been.And she didn't have to she could of had so much support she did not have to fight this alone.

I would not want your son to go through what I am experiencing now it is very painful and it will only hurt him I think the best thing for you to do is to prepare him because there may be a day he may not have you his father he will not have his guardian his protector and know its not a burden give him a chance to cherish his life and relationship with you I'm the first to say that if my mother would have just told me I would have been there for her more I wouldn't of been so much trouble my grief is full of regrets.

If your son knows he will know that he did everything humanly possible to make your time here on earth as pleasant as he could it will give him more closure and I unfortunately will never get that pleasure.

Offline ElZorro

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  • Posts: 535
Re: How to deal with a loved one who passes away from aids
« Reply #3 on: November 29, 2010, 02:55:50 PM »
Angel - I really think this thread needs to be about everyone out here helping you to grieve over the loss of your mother and don't want it to become about whether or not I should disclose to my son. I've sent you a Private Message (PM) that you should see to the left of the screen under your login name.

You have my deepest sympathies on the loss of your mother to AIDS. I have to believe that she loved you and was trying to shield and protect you from worrying about her and did what she thought was best for you. For right or wrong, sometimes, those are the decisions that we parents make.

Hopefully, some of the Long Time Survivors (LTSs) will chime in and help you to understand that her last 20 years may not have been as horrific as you think they may have been as a result of this virus, and I truly hope that was the case.

All the best to you in this very difficult time.  :'(

Offline WillyWump

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Re: How to deal with a loved one who passes away from aids
« Reply #4 on: November 29, 2010, 07:17:44 PM »

So sorry for the loss of you mother. 

I know it pains you that she didnt disclose to you. But for her, there had to be a strong enough reason for her not too, maybe it was fear of rejection, fear of being a burden, etc.. but whatever it was it was strong enough to prevent her from disclosing to you. You have to forgive her for that. She didnt do it to hurt you, she did it to protect you from hurt (in her eyes).

Something else may be in play here, it sounds like she was maybe from "the old school", I'm sure she can remember the mid 80's well when the hysteria about HIV was running rampant, people were vilified and called dirty or losers because they had HIV/AIDS, maybe this has stuck in her mind all these years, and made it that much harder for her to disclose to you.

We as parents have an overwhelming inate urge to protect our children from hurt and harm, we would do anything to avoid hurting our children. Sometimes our view gets clouded and in turn we dont disclose health issues to our children for fear we will cause them distress, even if we know they can handle it and would accept it. Irrational? Perhaps. But nevertheless that is how it is sometimes.

Sometimes as a parent we look for the "best time" to give bad news to our children. We never want to give bad news to our children when they are in school, or started a new job, or are in a new relationship, or are going through a rough time time, or are working long hours, etc..etc.. etc... and before we know it the time has run out.

It doesnt mean we dont love our children, on the contrary it means we love them immensely.

Sure the decision your mother made was not the ideal one, the ideal decision would be that she told you  and you would accept it and you would be there for her until the end. But in the end it was her decision to make, right or wrong. You will need to forgive her for that. I know maybe you feel guilty that you werent able to help her through this (because you didnt know about it), but guilt will eat you up, try to let go of it.

If you believe like I do, then she knows how you feel now, and she knows how it could have been, and she is so proud of you for wanting to help her with the HIV, and she doesnt want you to be sad about it or overwhelmed by it.

My heart goes out to you, be well, and know that your mother loved you immensely.


POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir

Offline Snowangel

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  • Posts: 1,416
Re: How to deal with a loved one who passes away from aids
« Reply #5 on: November 30, 2010, 10:35:26 PM »
Please accept my condolences for the loss of your mother. As a mother myself and an abuse survivor, I was wondering if your mother was on any meds for the HIV that you know of.  How long before your step father passed did his records state that he was poz? She could of been in total denial of being positive or she knew and did not have herself followed and/or chose not to or didn't need to take meds.

 The guy that infected me was extremely abusive, this man had me so scared and control-less that I would have jumped off a bridge if he told me to. If your stepfather was abusing your Mom and knew his status and used it to control and manipulate her more, it would be a really hard thought cycle to break. The moment I decided to fight back was the moment I decided to live. Him nearly choking me to death didn't make me fight to survive but seeing my toddler son shake in fear did.  Until that point , I had decided that I would just work my ass off , be by myself for the rest of my life ,live in denial about being sick and  never have to take the chance that the stuff that my abuser was saying was true by never disclosing to another human being.

I hope you know what ever the reason was for her not telling you it was not to hurt you, it was to spare you of the pain of knowing that the person that loves you most in the world might die sooner than expected.  Us mothers can be pretty stubborn when it comes to doing what we think we need to do to protect our children. You didn't lose your angel, she is just in a different place.

  Can you imagine the lies she would have to make up to pretend she had cancer?  It is  a lot easier to say nothing at all than to tell someone you are terminally ill with something that you are not.   I wish there was an easy way to tell you how to deal with this but the truth is you can only guess why your Mom made the decisions she did but I think deep down she loved you all and was trying to do all she could to protect you and your siblings.

I hope soon you can find some peace with her decision.
with love,
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

One thing you can't recycle is wasted time.


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