Ever feel like you need the support mentally for supporting your hiv loved one.

[Kmg1947]

Life at times has been overwhelming with getting throttled into all of this. Every time I take on the initiative with getting more involved and educating myself about everything that goes with HIV you can't help but notice the looks you get or the remarks from others, that are judging you by wanting to know more. It is as if you should have no feeling or regard @ all because it is not "YOU". As a HIV negative person people tend to ask questions like why are you so concerned and why are you so involved. It is your loved one "Not You". I can't begin to tell you the road you go down by watching someone you love go through something you can't do anything about. It takes a toll on you as well. Just like I am overwhelmed right now with typing this knowing what my mental has gone through. Crying sometimes at night and hiding from my husband and two other children about what is going on in my life about their brother, as know one knows but me and a good friend I am not a fan of too many message boards as you are being judged there too with other peoples thoughts and opinions. I think I am just venting, but it has sure been a painful/emotional 3 years for me. I wonder if any one else feels this. I think I will only use this message board to educate myself and not post anything. There is wonderful education on here. I will utilize it for that.

Kay..

[Almost2late]

Hi Kay, your a great person for being there for him, but try not to let it consume you.. I had to tell my family this, that its just a "disease" that can be controlled with meds.. Wishing you and your son the best.

[Kmg1947]

No, he is my oldest son. I know that he is grown and I let him handle and make his own decisions. I just gain all the education I can in case there is something I can help him on. My husband is very judgmental I feel. I wanted to tell him about it but he has to many idiotic thoughts and expression of things that go on in life. He is so cut and dry. I also,  have to respect my son and how he feels with me telling my husband. I at times just walking on emotional egg shells with holding this situation of life over my head. I have learned my place in all this and that is to sit down, shut up and don't say anything unless I am HIV and understand the toll, as other people have said. I know my son is going through a rough time ,but I am too, and he is quick to tell me that I don't know how it feels to be in this situation, and I have no clue or idea. Well he has NO CLUE of what this does to a mom..NONE AT ALL.  Just the things I have watched him go through loosing weight, spitting up, changing doctors. I am sooooo tired. I am. I just am holding on sometime by my eyelashes. I,m just exhausted. I don't know why I am so emotional with this now after 3 years. I wish my son knew how I feel and the hole he has left in my chest.

Kay

[Almost2late]

Sorry Kay for that, I realized your a mom after looking you up.. There's nothing like a moms love.. I can just imagine what you must be going through, I have kids myself, well there all grown and I love them very much.. Your son should come to this site, it may help.. and of course you should be able to get plenty of info here to as I did.. there's also Dr.Gallants site where you can ask medical questions about hiv, here's a link..

http://hivforum.tumblr.com/

Then there's also the body..

http://www.thebody.com/

Just a couple that have helped me besides this.. wishing you and your son the best

[zach]

mom, see a therapist, nothing wrong with some emotional guidance. you could also learn skills to help support your son

[Kmg1947]

Yes Zach!
I will be doing that. I have scheduled to meet with a therapist. I feel like it is a great step in the right direction, because yesterday I so had a a huge BUG UP my A$$. I got my big girl panties on.

Sorry for the liquid Melt Down Every One and the violin playing.

Oh Mercy.   totally embarrassed to say the least

K

[absopozilutely]

Yes Zach!
I will be doing that. I have scheduled to meet with a therapist. I feel like it is a great step in the right direction, because yesterday I so had a a huge BUG UP my A$$. I got my big girl panties on.

Sorry for the liquid Melt Down Every One and the violin playing.

Oh Mercy.   totally embarrassed to say the least

K

Lol don't apologize for a melt down! Trust me we've all had them were here for support remember! Were used to that and we still love and accept as many people as we can. Plus you haven't seen a meltdown yet, trust me the glitter starts flying and spirit fingers a blazing for us to make each other smile again.


Always,

Abso!

[Kmg1947]

Lol don't apologize for a melt down! Trust me we've all had them were here for support remember! Were used to that and we still love and accept as many people as we can. Plus you haven't seen a meltdown yet, trust me the glitter starts flying and spirit fingers a blazing for us to make each other smile again.


Always,

Abso!

Ty you sweetie. I appreciate you


K

[xinyuan]

It's powerful that he trusted you with his diagnosis.

My own personal experience with finding out. Meltdown was a pretty accurate description. While not exactly the same for a family member, it's still jarring.

Don't forget to take care of yourself.

[wolfter]

You might benefit from interacting with a local PFLAG organization if there is one.  There will certainly be other people dealing with a loved one's HIV.

I totally understand your need to fix your son, but you must take care of yourself first.  You can't live this for him and he must learn to be his own advocate and figure out how to thrive on his own.  It's OK to be supportive but not at the expense of your own emotional well being.

I struggled with something very similar in the last year.  My mother was suddenly diagnosed with untreatable Leukemia.  I went into over drive, spending all my spare time researching and learning.  I was so overwhelmed that it's starting affecting my own health.  That's when I realized that I could be supportive without living the disease. 

Take care of yourself and best wishes.
wolfie

[Jeff G]

You might benefit from interacting with a local PFLAG organization if there is one.  There will certainly be other people dealing with a loved one's HIV

That is a great idea ... not sure that I have read if your son is gay or not but if he is Pflag is a great organization ... and you don't necessarily have to have a gay or lesbian child ... that is where the friends part comes in . When I lived in Chicago one of my favorite parts of Gay Pride was the PFLAG delegation . I was always impressed at the joy in that group and how active and vital they were to the LGBT community .   

[mecch]

Life at times has been overwhelming with getting throttled into all of this. Every time I take on the initiative with getting more involved and educating myself about everything that goes with HIV you can't help but notice the looks you get or the remarks from others, that are judging you by wanting to know more. It is as if you should have no feeling or regard @ all because it is not "YOU". As a HIV negative person people tend to ask questions like why are you so concerned and why are you so involved. It is your loved one "Not You". I can't begin to tell you the road you go down by watching someone you love go through something you can't do anything about. It takes a toll on you as well. Just like I am overwhelmed right now with typing this knowing what my mental has gone through. Crying sometimes at night and hiding from my husband and two other children about what is going on in my life about their brother, as know one knows but me and a good friend I am not a fan of too many message boards as you are being judged there too with other peoples thoughts and opinions. I think I am just venting, but it has sure been a painful/emotional 3 years for me. I wonder if any one else feels this. I think I will only use this message board to educate myself and not post anything. There is wonderful education on here. I will utilize it for that.

Kay..

Kay I was HIV- through the 80's 90's and until 2008.  During that time I had some lovers HIV+ and some died and one committed suicide when near death.
I looked for support from all my friends.  It helped that none of these people were hiding their HIV status.
Why is your son keeping his status from his father and his siblings? 
Well, I don't imagine there are that many in person support groups for "friends and family of HIV+ people" - just because its not a death sentence, bias has gone done somewhat, and many HIV+ get on with life well enough.
If you can't find an in-person support group, be sure you can always vent here.
You might also explore going to a therapist yourself for 1-1 therapy, about your son and about whatever you want.  Right?

[Kmg1947]

I totally understand your need to fix your son, but you must take care of yourself first.  You can't live this for him and he must learn to be his own advocate and figure out how to thrive on his own.  It's OK to be supportive but not at the expense of your own emotional well being.

I struggled with something very similar in the last year.  My mother was suddenly diagnosed with untreatable Leukemia.  I went into over drive, spending all my spare time researching and learning.  I was so overwhelmed that it's starting affecting my own health.  That's when I realized that I could be supportive without living the disease. 

Take care of yourself and best wishes.
wolfie



Wolfer,
Your words are true indeed correct. I have been sitting back as Mecca said in a prior post and letting him take the wheel. If not I will be looking forward to a possible nervous break down. I have never had one nor do I want one. I have to take care of my self. Be there for him and let him take the road that he must take for himself.

Thanks for your honesty.
I hear you loud in clear and I know it is the truth.

Kay

[Kmg1947]

Kay I was HIV- through the 80's 90's and until 2008.  During that time I had some lovers HIV+ and some died and one committed suicide when near death.
I looked for support from all my friends.  It helped that none of these people were hiding their HIV status.
Why is your son keeping his status from his father and his siblings? 
Well, I don't imagine there are that many in person support groups for "friends and family of HIV+ people" - just because its not a death sentence, bias has gone done somewhat, and many HIV+ get on with life well enough.
If you can't find an in-person support group, be sure you can always vent here.
You might also explore going to a therapist yourself for 1-1 therapy, about your son and about whatever you want.  Right?

My son has one other person that he confides in. That is his friend Chaz who has cancer. He cares about my son tremendously and I am so glad my son does @ least have someone. He goes on occasionally to a web site for support, but doesn't keep up with it. I told him your life has changed. What is wrong with support from other HIV+ friends. It would be so beneficial, as I also have an aunt whom is HIV+ and has been for 17 years. She reminds me of you "Mecca". She loves me  but she pulls no punches on the matter of her health or anyone else living with HIV. My husband and my son do not get see things eye to eye and in the past have had drag down arguments. My husband is very old school, judgemental -cut and dry. I will only leave that conversation open for my son to tell his step father. Until than Mecca I just can't stir up something else that I am unable to handle emotionally. I see my therapist in another week. I know I really need this. I have not told my 11 & 13 yr old as of yet. I think it would be to much for them to digest and once again I respect his privacy. I am happy he is up front with Chaz his significant other. Chaz has been there 100% but he is battling cancer/ treatment right now. Which has put my son under more stress. I so want him to have a handle on this situation like you Mecca and others, like my Aunt she is my hero. I am so proud of her. I can't make my son get there though. He has to want to do it. Just like the Therapist told him and Chaz.
He is serious about his appointment and medication. Thank GOD! I just pray this desire to want a better life stays grounded in him with knowing he can do it. Just like you and others.

Please keep me in your prayers. I have let this go on a spiral down-fall and it is my own fault. I am taking the steps I need for me though. I have to and I know I do.

Thank you for your knowledge. I love your post! They are so informative.

Kay

[mecch]

CHaz is your son's partner?  I'm just curious about how old your son is and also his partner.  How terrible for his friend Chaz.....

Of course, you son decides who to tell and when.

i don't understand - what have you left to spiral down?  Taking care of yourself?

If your son is in a really bad way with HIV, then of course you DO have to get involved...   Its only natural. 
But if he is like many of us - all the factors are in place to have a manageable disease and a good life - and yet he can't manage - hmmm - what might help him get to that better management might be beyond your expertise - you know - he might need a social worker and/or a therapist...
But its only natural, no matter what the reason, if a loved one is getting sicker rather than better, we must try to help in any constructive way.

[Kmg1947]

CHaz is your son's partner?  I'm just curious about how old your son is and also his partner.  How terrible for his friend Chaz.....

Of course, you son decides who to tell and when.

i don't understand - what have you left to spiral down?  Taking care of yourself?

If your son is in a really bad way with HIV, then of course you DO have to get involved...   Its only natural. 
But if he is like many of us - all the factors are in place to have a manageable disease and a good life - and yet he can't manage - hmmm - what might help him get to that better management might be beyond your expertise - you know - he might need a social worker and/or a therapist...
But its only natural, no matter what the reason, if a loved one is getting sicker rather than better, we must try to help in any constructive way.

Yes Chaz is his partner. My son is 25 and Chaz is 24. Chaz has been undergoing treatment at the hospital and the chemo has taking a toll where he was really ill, but praise GOD he is doing allot better. My son has been right by his side and spends the night at the hospital 3 to 4 days out of the week, and I will also cook a meal and go by the hospital too. It is hard for me to see, as my mother died at 41 in my fathers arms due to kidney cancer. Just a four years younger than I am now. Yes I am nervous Mecca because he has a few lymph nodes noticeable on the right side of his neck. His Dr has him on antibiotics and he will see his new Doctor on the 28th of this month. I am on pins in needles with his lab work. I would lie if I told you I am not. His last appt he was at 400 cd4 but his VL count was a little high. We are helping in a constructive way. However he can see the importance of him being in control of staying healthy. I think seeing what poor chaz had to go through really makes him want to to better with his health situation, as he knows life is not promised. I can't wait to give Chaz a kiss on his face when he get's better. He has actually been my son's rock.

Kay

[mecch]

Is Chaz's cancer terminal or does he have a shot at recovery, remission, cure?

As for your son, its odd to say his VL is "a little high" because if he is on treatment, his viral load should be undetectable, with blips now and then but a blip should not be considered "a little high".  If your son is having treatment failure he needs to be a lot more proactive about 1) getting a doc who responds to your son's difficulties and 2) come hell or high water - staying adherent.
Nobody HIV+ on treatment should be flirting with treatment failure and certainly not someone so young as your son....
He really should be looking forward to a normal life span and ever better and easier ways to be keeping the HIV at bay, decade after decade.
ITs terrible he has this problem with pills, and its doubly terrible that such a young couple has so many stresses... 
I am making comments from a distance and with scant information.  Sorry if I overstep.

[Kmg1947]

I don't feel as though your stepping your boundaries. Chaz cancer is not terminal thank goodness. He has a shot to a good life per his Doctor. Yes! my son had did exactly what you were saying flirting with the medications. He was so overwhelmed by getting sick on the medication that the reaction of this I believe has put him behind. I think the entire pill swallowing thing was mental due to what was to come afterwards. I told him you must stay compliant to your medication. I am praying his appointment with his New Doctor will be productive. I want to see my son HIV+ and happy. He has had depression now for the past 2 years. I just want to see him happy and healthy. I will update you all when we go to the New Doctor.

Kay