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Author Topic: Hi! I had a grandson with HIV....  (Read 8908 times)

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Offline dearestgrandson

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  • Posts: 45
Hi! I had a grandson with HIV....
« on: September 20, 2008, 10:15:51 AM »
I don't know how to start this. My grandson just committed suicide and he was HIV+. He had been HIV+ for 3 years and 2 months. He was only 19 when he was diagnosed, but he didn't tell us until just about 2 or 3 months ago.
My wife and I are both very distraught, but I have to keep strong for her. He had been living with us since he was 18 because we gave him free room and board so long as he was working towards a college degree. Things are just so different without him here. We miss having him come down stairs and greeting us in the morning.
I found this site because when we looked at his computer we saw that he used to come here, although I don't know his username.

I'll come back and write more details later, if anyone is interested.

Offline Peter Staley

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Re: Hi! I had a grandson with HIV....
« Reply #1 on: September 20, 2008, 11:07:16 AM »
How horrible.  I'm very sorry for your loss.   If you find his username, let us know.

I'm glad you found our forums.

Peter Staley

Offline dearestgrandson

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Re: Hi! I had a grandson with HIV....
« Reply #2 on: September 20, 2008, 11:38:02 AM »
Thank you for your kind words.

He overdosed on barbiturates, oxycodone, and some other medications. He left a letter telling us how horrible it was to be HIV+, about the social rejection. He said he was upset because the medications improved his QUANTITY of life but not the QUALITY. We know he had recently had an MRI for PML, but his doctor told us that he did not have any HIV related brain diseases.
We don't understand why he hid it from us for so long, we would have been so supportive. My wife and I are the most liberal people in the world. We are well educated and would not have treated him any differently. My wife lost her first husband (his biological grandfather) to suicide back in 1982. She is being hit hard by this. He gave no indication that he was depressed. He worked fulltime during the summer and even registered for classes this semester and bought all his books and everything.
The note he left us was dated back in May. It was 4 hand written pages, both sides.

When I say recently, I mean to say that he committed suicide on the 26th of August.
« Last Edit: September 20, 2008, 11:46:10 AM by dearestgrandson »

Offline Assurbanipal

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Re: Hi! I had a grandson with HIV....
« Reply #3 on: September 20, 2008, 02:21:42 PM »
Dear grandfather

My condolences on your loss.  It's clear from your post that you loved him and did what you could.

5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%
2014 VL UD - 48
2015 VL 130 Moved to Triumeq

Offline auspoz

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Re: Hi! I had a grandson with HIV....
« Reply #4 on: September 20, 2008, 06:51:30 PM »
Please accept my sincerest condolences for your loss.


Offline Snowangel

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Re: Hi! I had a grandson with HIV....
« Reply #5 on: September 20, 2008, 09:00:18 PM »
I am truly sorry for your loss!
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.

Offline dearestgrandson

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Re: Hi! I had a grandson with HIV....
« Reply #6 on: September 20, 2008, 11:04:40 PM »
Thank you guys. I really don't know what I was looking for here, maybe help to understand why he would do this. I thought life was good for people with HIV now, because of the medications. Thats what I have always been told atleast.

Offline komnaes

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Re: Hi! I had a grandson with HIV....
« Reply #7 on: September 21, 2008, 12:31:26 AM »
I am very sorry for your loss Dearest..

Some of us have decided to take our lives for many reasons. One of my best friends took his life after being diagnosed (it was back in the early 90s, I wrote about him here), and I unfortunately had known two more persons who also did the same. Looking back, I now think that in all those cases, being diagnosed as HIV positive was only the trigger. They were dealing with a lot of emotional struggles that they managed to keep dormant, but when the diagnosis came they were unable to keep them at bay anymore.. that's how I feel anyway.

It's only human that we want to know why those loved ones did what they did, but at the end I feel that this process of finding out is helpful only if it can help us to heal, recover and move on. We can never bring them back, so what's the point of asking ourselves why we didn't pick up the signs, we could have done more to help him, etc?

New meds have helped many of us to stay healthy for a longer period of time, and it's a BIG improvement since the mid 90s. We've all been given a new lease of life, so to speak. For some of us it's good enough a reason to be grateful and carry on, but for whatever reasons some just didn't feel that way.

My best wishes to you, your wife and the whole family, Shaun
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline Lakis

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Re: Hi! I had a grandson with HIV....
« Reply #8 on: September 21, 2008, 11:08:10 AM »
I'm very sorry for your loss.My best wishes to all of you

Offline dearestgrandson

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Re: Hi! I had a grandson with HIV....
« Reply #9 on: September 21, 2008, 09:24:18 PM »
Thank you guys for your kind words.  :)

Does anyone think they can explain to me the limitations of the anti-HIV medications?

Offline hotpuppy

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Re: Hi! I had a grandson with HIV....
« Reply #10 on: September 22, 2008, 02:25:06 PM »
I'm sorry to hear about your loss.

From reading the thread of posts I think the issue your grandson may have been referring to is that HIV meds can keep you healthy.  But it's still a pretty lonely world.  Being single is bad enough.  Being single and positive can feel like you've been sent to a deserted island.  You didn't say if he was gay or not, but that can add another level of isolation.  Being young, most of his friends are likely to not have been HIV +.  This means that he may have felt surrounded by people who weren't like him, who didn't have his issues.  On a day to day basis this may have gotten him down and feeling like his quality of life was suffering.

I think what you are really asking is for someone to let you see inside the box so to speak, to understand what life is like.  So I'll take a crack at an extended analogy.

Imagine one day that someone puts a red X on your back.
This Red X is 1 foot square.  Everywhere you go, if people see  it they will think you are wierd and ask you questions.
Now imagine that this Red X will begin to eat your body from the inside out.  A little bit at a time.  Each day will be a bit harder.
So you would go to see your Doctor.  Your Dr. tries to console you, but knows he can't take the X off your back.  He can however give you medicines that will slow down, and possibly stop the X from eating your body.  The catch is that these medicines are frightenly expensive and you either have to be poor and good at paperwork, or well off with good insurance.
Your options for dating are limited to only other people who have a Red X or people who are willing to ignore it.... people who will ignore it are far and few between.  Everyone knows having a Red X on your back means that you have something that can kill you. 
Most people will run, quickly, the instant they find out you have a Red X on your back.  Until recently, some countries would bar you just for having it, even if you were on treatment.
Some people will be so afraid of you that they will take irrational steps to protect themselves.  They are afraid that you will do something that gives them this Red X. 
This Red X is pretty much what life with HIV is like.  Yes, it can be treated, but many people are terrified of it and it's abit like being a fish in a goldfish bowl sometimes.  Very lonely.

I hope that this helps you understand and please feel welcome to ask any questions you have. 
Don't obsess over the wrong things.  Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion.  It's about getting out there and enjoying it.   I am a person with HIV - not the other way around.

Offline emeraldize

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Re: Hi! I had a grandson with HIV....
« Reply #11 on: September 22, 2008, 03:21:23 PM »
If you go to the upper left hand corner, please click on the PM I am leaving for you.

Offline Joe K

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Re: Hi! I had a grandson with HIV....
« Reply #12 on: September 22, 2008, 04:38:12 PM »
My deepest condolences on your loss.  Words can never truly express the loss of someone close, so I will not even try.  But I believe I can help you understand some of the thought process your grandson went through and why suicide may have seemed so attractive to him.

I have been poz for 24 years and I suffer from extreme depression and anxiety and have been undergoing medications and therapy for decades.  However, I have also contemplated suicide many times and during my last mental collapse, I found myself sitting on the edge of my bed, with a loaded pistol in my mouth and my finger on the trigger.  To this day, I do not know what prevented me from pulling the trigger, but in looking back, I am so grateful that I gave living another chance.

Hotpuppy described some of the aspects but there is another disease that is involved here and that disease is depression.  Depression is a horrible disease that can remove your interest IN ABSOLUTELY ALL ASPECTS OF YOUR LIFE, including that very life itself.  Depression is usually caused by a chemical imbalance in the brain and it changes your perception of reality and it really diminishes your ability to make sound judgments.  But what is most damaging about depression is you can be in the middle of it and be totally unaware of what is happening.

I am sure there were many issues that tormented your grandson, but you must realize that he may have been unable to ask for help, nor did he think he needed any.  Please do not second guess yourselves, because while you may have been able to help, if you had known earlier, you do not know that and you gave him love and support and he knew that.  Also, any intervention would probably have failed, because if you believe you are better off dead, then you will make that happen.

I know the sense of loss is overwhelming right now, but please do not forget all that you did right.  One of the most precious things a poz person can receive is the unconditional love of those around us.  You provided him with that and while I wish I could give you more answers, there just are not any.  Sometimes depression can build to such a degree that even the act of living looses its appeal.  And it is during those times, that people are most prone to take their own lives.

Your grandson, for whatever reasons, no longer possessed the will to live and he took his own life.  He did not do it out of spite nor to punish anyone, he most likely did it out of the sheer nothingness of extreme depression.  He stopped feeling, so he may as well stop living.

Once again, my heart goes out to you both and please be kind to yourselves, you have also suffered a loss, one that you could have done nothing to prevent.
« Last Edit: September 22, 2008, 04:55:38 PM by killfoile »

Offline dearestgrandson

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Re: Hi! I had a grandson with HIV....
« Reply #13 on: September 22, 2008, 05:49:49 PM »
You guys are very kind. I know, or atleast I think I do, that I probably couldn't have helped, but atleast I could have tried. But I didn't even know there was a problem.

You're all right. His letter talked about having to drag himself out of bed to go to school, and that he didn't even want to do the work anymore. He said he lost the will to do anything. He talked about the anger and rage that built up inside of him. He said that he became an entirely different person in his head, mentally. He said his personality was completely different since being HIV+.

He told us in his letter that he thought often about murdering the person who infected him. According to his letter the person who infected him was in the military and told him that HIV+ persons were not allowed in the military. This is not so, though. He said that he had purchased a gun, which we couldn't find, and was going to murder this person who infected him before he killed himself.

Offline hotpuppy

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  • Posts: 555
Re: Hi! I had a grandson with HIV....
« Reply #14 on: September 22, 2008, 09:04:18 PM »
HIV + people are allowed to serve in support roles in the Military.  Or at least they were in 1993. 

Killfoile brings out a very good point about depression. 

One thing I would recommend is going to a counselor yourselves.  You are in the process of greiving and there seems to be some guilt associated with it.  You sound like the kind of grandparents that we would all like to have, educated, caring, concerned.  Counseling may help you to explore some of these issues so you can bring closure to them. 

I think it's also important to point out that there are a few kinds of suicide attempts.  Sometimes people really want attention and suicide is the mechanism by which they advertise and attract that attention.  This is no less of an urgent issue, but the person usually doesn't really and truly want to die.  They want the pain to end.

There are also those who are determined and have decided that being dead is better than being alive.  They frequently don't advertise and they simply do.  Sometimes it is because they feel isolated, sometimes it is because they feel abandoned.  In other cases they have a terminal disease such as advanced AIDS, Cancer, or being paralyzed.  I believe from what I have read that your grandson was in the second group, that determined for whatever reason that death was better than life.  It's such a tragedy, but sometimes tragedies happen.  I think we each have a fundamental right to make the decision to "check out."  While I don't think your grandson was there, and you don't think he was there, for some reason he did.  It doesn't make it right in your view or mine.  However, we are all entitled to our dignity.   I know I personally would much rather be  dead than a lab expirement in a hospital with no quality of life.  That's my personal decision.  If I ever get to where I will be there I will exercise my right to check out for a variety of personal reasons. 

Japanese culture has a very mature outlook on suicide.  It may not agree with your opinion, but I would recommend researching it as it may help you come to peace with your grandson's choice.  I can't fathom the pain you must be enduring in your loss and I hope that what I have written is not too disturbing and helps you to continue your path forward and find peace. 

Best Wishes
Don't obsess over the wrong things.  Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion.  It's about getting out there and enjoying it.   I am a person with HIV - not the other way around.

Offline prayerblue

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Re: Hi! I had a grandson with HIV....
« Reply #15 on: September 23, 2008, 07:02:31 PM »
I'm terribly sorry for your loss... just know you did all you could at the time and I think I personally would be lucky to have grandparents (family in general) as supportive and loving as you... I really see good in what you did for your grandson, I just believe that it's hard to deal with but that you did all you could, rest assured!

Of note, I'm in the same frame of mind, where I wonder if life is the best choice... I'm still hopeful.

Offline Aylaeight

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Re: Hi! I had a grandson with HIV....
« Reply #16 on: September 23, 2008, 09:39:20 PM »
I am so sorry for your loss.

Wishing you and your grandson peace.

Offline HopeandCope

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    • Hope and Cope
Re: Hi! I had a grandson with HIV....
« Reply #17 on: September 23, 2008, 11:21:19 PM »
I am so sorry for your loss and can not express in words to let you know how I completely feel.  I am a Mom of a Newly Diagnosed HIV+ Son and the pain you are going through is monumental.  I have you in my thoughts.

Blessed to you,

Hope and Cope Support Site
A Safe Place for Families & Friends of HIV+ People

Offline xyahka

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Re: Hi! I had a grandson with HIV....
« Reply #18 on: September 29, 2008, 03:47:45 AM »
I am extremely sorry for your lost... i was someone who was considering suicide as a good option by the beginning of this year... during several months i was deeply depressed and like others have mentioned... suicided sounded so good... i mean like a stop to all the worries, all the troubles... all the pain, all the loneliness... to everything. Just like a white space where nothing would ever hurt me again.

Some of my friends from this forum and others i have met from internet helped me to stay here... my psicologist was also helping me, we used to meet on weekly basis... in a point i was so tired of everything that i even told my mother and sister i wanted to suicide... just to let them know it was not their fault but my "informed decision".

One tends to close ourselves while walking the dark path of depression and suicide... many people around me never knew or suspected i wanted to die... not until i spoke about it, i simply did it to make sure others would not feel guilty... it was not about them, it was about me. Perhaps the speaking was what helped me to survive, once i started to speak about it my friends, psychologist and mother worked hard to take me out of that ... darkness.

Reading you, i imagine my mother and my sister... and the rest of my family.. the way i would have hurt them... and i remember i used to say i didnt care much about their pain... i was just focused on solving MY PAIN, i was wrong. I don't wish anyone the pain you are suffering... i wish i could have done something to even change your grandson way of thinking, you also don't deserve this pain.

The only thing i can tell you is... it is not your fault, it is not about anything around us... it is simply about us, about how we feel and the ways we try to find to scape of this. I understand now suicide is not a good decission, but for about 4 months i just couldn't realise i was wrong. You did all you could with what you knew, there was nothing else you could have done not knowing what was happening... it was his decission, we can only pray he found the peace he was looking for.

I wish i could say something that could heal your hearts and delete your pain, but the only thing i can do is send you all my love. You are wonderful and you grandson knows it, i am sure.

Juan Carlos
13/03/07 1er diagnóstico /Peso: 79kg
19/04/07 CD4: 494 /CViral: ?? /Peso: 80kg
19/07/07 CD4: 659 /CViral: ?? /Peso: 79.5kg
06/03/08 CD4: 573 (después de meses muy deprimido) /CViral: ?? /Peso: 79kg
17/09/08 CD4: ?? /CViral: ?? /Peso: 84Kg
06/02/09 CD4: ?? /CViral: ?? /Peso: 85Kg /HCV: Neg /HBV: Neg.
07/03/09 CD4: ?? /CViral: ?? /Peso: 87Kg / Gym 3días/semana y Natación 2días/semana.
12/05/09 CD4: 470 /Cviral: ?? /Peso: 87Kg.
08/07/09 CD4: ? /CViral: ? /Peso: 77Kg.
09/12/09 CD4: 510 /CViral: ? /Peso: 78kg. No medicinas aún
10/01/10 CD4: ? /CViral: ? /Peso: 76Kg.
15/05/10 CD4: 320 /CViral: ? /Peso: 76Kg.
01/02/11 CD4: 291 /CViral: ? /Peso: 78kg.
05/05/11 CD4: 366 /CViral: ? /Peso: 78kg.
27/07/11 CD4: 255 /CViral: 138000 /Peso: 78kg.

Disfrutando y aceptando una nueva vida...

Offline LittleOne

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Re: Hi! I had a grandson with HIV....
« Reply #19 on: October 03, 2008, 10:36:44 AM »
Dear Grandfather,

I can perhaps give you a small bit of insight...

I have posted one time but when my husband and I were first intimate (dating
then) he did not identify and we did not use protection.  Then he twisted off
on drugs (heroin) and disappeared; I found out he was positive from my now
step father in law who thought I knew.

For the next few weeks I was frantic; being a nurse it was bad enough; living
in a very rural town in West Texas made it suddenly a flaming neon sign (I thought)
and a friend came in and drove me back to Austin where I had baseline testing
and then thought about the "wait" to see if I were positive.

During this time I had a small amount of experience in preparing for "being positive"
and it was one of the most difficult life experiences I have yet to know.  Without
active support from others who do survive, live happily and give their experience to
those new with this disease it is "normal" if not expected to be depressed, and
isolate.  Depending on what his levels were, side effects of medications for his
chemotherapy so much could have been operational. 

Sometimes those who love us most (we think) just say something so hurtful or
unacceptable it forms a permaent image (for the disorder is incurable and this
stays with someone suffering this emotional pain) and they just can't get through.
You were a loving and positive force in your grandson's life I know he knew this
and perhaps you can help someone else who comes your way with HIV this may
be a message for you to move forward and love another...

I can tell you this although I am not positive and my husband and I have not
reunited (he is sober now and I have other health issues) I did die 3 times in my
life, and can tell you (cardiac arrest, et al.) that the God of my understanding is totally
LOVE and when we do go to that better place (when it is our time) then HE
provides ALL we need; there is no hunger, suffering, antagonism, rejection, or
anything but LOVE.

You and your family are in my prayers.  Reach out there is a reason for this and we
all have a purpose in this world of LOVE that God did create.  Ask God "what next"
and listen for HE will reply...

Gentle hugs (Little One)

Offline dearestgrandson

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Re: Hi! I had a grandson with HIV....
« Reply #20 on: October 16, 2008, 04:15:29 PM »
I don't mean to bump this thread up from the depths of hell, so I am sorry.

Thank you all for your kind words. They really can provide some great insight even if you don't think they can. I do not log in often because I am taking care of my wife. Her grieving is getting worse by the day. :-/ I will be sure to try to come back and check PMs more often.

Thank you al, though.

Offline Andy Velez

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Re: Hi! I had a grandson with HIV....
« Reply #21 on: October 17, 2008, 04:38:43 PM »
Dear Friend,

This is tragic. My deep condolences to you and to your wife. It's sad beyond words. I pray for you two to be comforted and to find the strength to go on with your lives.

It's a terrible, terrible truth that those who are living with HIV/AIDS, while working to stay healthy, also have also to deal with prejudice and ignorance about the virus.

For now I can only send my best wishes and prayers. 

Andy Velez

Offline heartforyou

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Re: Hi! I had a grandson with HIV....
« Reply #22 on: October 22, 2008, 03:47:56 PM »
Having dealt with suicide on more then one occasion I can only tell there was nothing you could have done.

I think you and your wife have given him all he has taken with him... "unconditional love".

It is a tragedy that no one ever wants to live. And I feel terribly sorry for you.
May he rest in peace.

Blessings form Belgium.

Diagnosed in 1987 and still kicking
Kivexa (Epzicom),Tivicay once daily.

Switching to Viramune, Isentress and Emtriva

Happiness is the freedom of breathing fresh air every day.


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