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Not so sure I can do this anymore...

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Trixie:
It has taken me two days to be strong enough to write this. And I am embarrassed and upset that I am thinking these things. But I am...

My husband is a long term survivor. He has been positive since 1983. He has tried a lot of different meds over the years, but 5 years ago he stopped taking them altogether. Still, he did quite well. He never suffered from much more than a severe ear infection or a somewhat persistent skin rash one summer. That is until this winter.

He is wasting away. Over 6 feet tall, he weighs maybe 150 lbs. He can't regulate his body temperature; he has thrush. No appetite, no energy... The doctor put him on Dapsone and wants him to start Atripla next week. He won't stay on it long if the side effects are too much for him. Patience with medication is not one of his fortes.

For the first time in a long time he is having to face that he has AIDS. And it is scary.

I have stood by him always. From the initial diagnosis - through AZT, DDI - through not telling our families to telling our families. Funeral pre-planning, loosing friends - the emotional roller coaster that this is. And I felt I was handling things well. But lately that is not the case. I can't bear it!

He is so frail to me, like a bird. He doesn't talk about it much - but he looks scared. He is angry. He is introspective. And he tells me he loves me a lot more than he used to (nice, but...). And I am terrified. I don't want to lose him! I want to be the brave, amazing wife that you see on TV movies - and I am not sure I can be. Lately I lock myself in the bathroom a lot and cry. I am frightened that I won't be able to cope with what is ahead. Won't be able to keep my promises of taking care of him at home. Won't be able to put up the brave front that he needs. I have no faith that the meds will work - even though rationally I have no justification for these feelings. I just don't know if I will be a help or a hindrance in the months ahead. I feel sometimes like I should just leave.

Honestly, I am not looking for pity. I know that is not what I want or need. I just needed to express these feelings to someone who understands. This is the only place I could think of to come.

bear60:
Having been in the role of caregiver I feel your pain. Recently, when my friend Jim was dying, the hospice nurse and I were talking.  I was telling her how Jim had been able to bounce back from so many different Opportunistic Infections, and other illnesses.  She looked at me and said." You do understand that he is not going to bounce back from this one, dont you?"
I guess you have to come to terms with that sort of reality.   And I believe you need to make some time for yourself. Once a week do something that takes you totally away from HIV.

allopathicholistic:

--- Quote from: Trixie on March 03, 2007, 03:46:32 PM ---I have no faith that the meds will work - even though rationally I have no justification for these feelings. I just don't know if I will be a help or a hindrance in the months ahead.

--- End quote ---

Hi Trixie, It sounds like you've been your husband's rock for over 2 decades. Thank you for opening up to us here on AIDSmeds. We're gonna help you guys. Your husband has held up well for so many years - It sounds like only recently this winter his body is now strongly crying out for help since he stopped meds 5 years ago. Addressing what you said about faith in meds, I just want to briefly share a little hope about today's meds (for you to keep in your own mind, and maybe share this with your husband too) In many people's opinions, the meds of today are excellent compared to the older meds. Regarding Atripla, we have lots of members here who take Atripla, and some even Dapsone too.

Ask us anything and know we're thinking of you guys and looking out for posts from you

Strength to you and yours,
Alex

Trixie:
I just finished reading the "Being supportive and understanding" thread and now I feel even more guilty!

I am so tired. And I want to cry. Hanging on by a thread right now.

But you do give me hope... and for today that will do.

Thank you!

Alain:
Trixie,

I am glad that you found this place. Having been there twice myself I completely understand how you feel right now.

Don't carry the guilt and all the emotions that comes with it. You can only do your best and I command you for standing by you hubby all those years.

I want you to try this; stop protecting him from seeing you crying in the bathroom. It is perfectly normal and you have every rights to share your feelings with him honestly. By doing so and especially like he said that he loves you even more now, it will see that YOU too is grieving and having difficulties dealing with all this.

Knowing full well how his health has been affecting you, might open doors for dialogue that I know will be very therapeutic for both of you. You can't forced him to do what ever he does not want to, but at least you can have peace of mind knowing that you gave it your best shot.

Courage you have and a strong women you are and you will be fine.

In Love and support. Alain ;)

 

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