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Family and Friends >> My Loved One Has HIV/AIDS

BusyIam
Newbie

Reged: 07/30/10
Posts: 4
Amazing!
      07/31/10 12:12 AM

Everything changed two weeks ago when my 21-year old son told me his rapid test was positive. Holy ish! My baby - - still and always. I cried, blamed myself, struggled to figure out why, as educated as he is about the disease, would this happen? Is he being punished for something I did (narcissistic, I know, but still...)? Let's face it - we can be educated and know others who have "it" and fear "it," but we don't always use a condom do we? We don't always use dental dams, do we? Nah...we don't.

We live in a well-suited area for this kind of thing I am told - major hospitals, a great deal of research here. Well, where are the resources? Who is there to provide information for us caregivers - the front linesmen and women - who will be affected by this as we are standing beside our positive loved ones?? Get on Google and try to find 'hiv caregiver support groups' or something of the like in my resource-rich area - good luck with that.

On an airplane we are told to put the oxygen mask on ourselves first, then put the mask on our child. That is so you don't pass the Hell out while trying to protect your child. Makes sense.

So WHY has my short experience with the healthcare providers in my awesomely resource-rich state taking this oxygen mask out of my hand? They are totally put-off by my questions about care, resources, and the stats of their facilities? Aren't these vital questions to ask?

Most providers I have worked with in the past emphasize the importance of researching care facilities before obtaining care. Research JCAHO scores, research morbidity and mortality rates, research patient satisfaction, clinic wait times, awards and recognitions. NAH - definitely not invited in my limited experience with this end of the system. It's like they want patients and families to act like lost sheep to be herded through their care system without asking questions.

My son, during a recent visit with a local case manager was told that his mother needs to stop trying to be his social worker. I will tell you this...if a healthcare provider is not willing to provide a caregiver with any information, support or to answer questions about their program or provide any type of indication regarding the quality of care they provide, leave 'em alone!

This is just the beginning...My journey with my son begins.

Post Extras: Remind Me!     Notify Moderator

Entire thread
Subject Posted by Posted on
* Amazing! BusyIam 07/31/10 12:12 AM
. * Re: Amazing! Jackie__Blue   07/31/10 07:16 PM
. * Re: Amazing! BusyIam   07/31/10 10:51 PM
. * Re: Amazing! Jackie__Blue   08/01/10 01:53 PM
. * Re: Amazing! BusyIam   08/01/10 10:43 PM
. * Re: Amazing! laurel   08/06/10 02:13 AM

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