Thursday, January 18, 2007

Social Security, More Death and Dying

Steven has been in and out of the hospital since November. Really, I'm unsure how they ever sent him home.

I just got off the phone with someone who is in charge of someone in Social work there. Her name is Ellen. She was lovely, I'm hopeful she's competent.

Here's how our conversation went.

ELLEN: Hi Jessica, I'm returning your call regarding Dean.

ME: (voice cracking) Ellen, I'm so glad you called back and I will apologize in advance if anything sounds mean or rude but I'm very frustrated with the social workers you employ.

ELLEN: Go on.

ME: Can you please access Steven's file while we discuss this? Again, I know I'm unbelievably rude but you all have failed Steven in so many ways I really need to be sure that we are on the same page.

ELLEN: mmmm [typing something into her computer]

ME: Would you agree that when a patient has been in the hospital that it is the responsibility of the Social Worker to help fill out complicated forms?

ELLEN: Well that all depends...

ME: Ellen, I've been on the phone with Steven for two hours trying to fill out the Social Security Disability report.

ELLEN: I believe that is something the physician fills out.

ME: Only the second part, maybe the third. Steven can't even tell you what year he had bypass surgery or his Doctors' names. He thinks it was in 1999 and I'm trying to explain to him that it's not possible because my son wasn't even born then...

ELLEN: How can I help?

ME: I need you to get to Steven's room immediately and fill out the rest of these forms. He's entitled to more than what you've pro...

ELLEN: Can I call you if I need help with them?

ME: Yes, but it's really important that you're in the room alone with him because his mother doesn't know he's gay.

ELLEN: [silence]

ME: Okay, whatever, we all want to pretend she doesn't know because, frankly, Steven's a little demented and....

ELLEN: [in a kind and soothing tone] I really do understand.

ME: ...and I'm tired and I'm hungry and every time we fill out these forms Steven cries and so do I and I really need to let you know that I appreciate this and that I'm only mean to you because it's the only way to get anyone to pay attention.

ELLEN: Really Jessica I do understand

ME: I believe you do but there's one more thing

ELLEN: [more silence]

ME: Steven doesn't know he's dying

ELLEN: [a sharp intake of breath]

ME: I kept asking him [now I'm sobbing] 'Honey we need to put down the date of your AIDS diagnosis' and he keeps telling me, insisting that he doesn't have AIDS only HIV but I know that his T Cells are under 100 and that his intake papers for the heart surgery said AIDS and not HIV so I know he has AIDS and we need that diagnosis and...

ELLEN: I'm sure he'll get disability because at this point the Hodgkin's disease is terminal.

ME: [puking in my mouth a little bit]

ELLEN: Would you like a referral to someone to help the family?

ME: No ma'am. I've done this before. Many times.

ELLEN: Would you like to call Steven and tell him I'll be in his room in about 15 to 20 minutes?

ME: Yes.

ELLEN: Is there anything else I can help you with?

ME: You need to know that Steven and his partner will take whatever you give them. That's how he was discharged from the hospital before. I also need to let you know that I'm watching everything and I'm very grateful for what you do. But if you discharge him while he's not ambulatory and don't provide home health care, food and transportation I will personally hold your feet to the fire.

ELLEN: Understood.

ME: Ellen, I know what bouncing is and I write a good letter.

ELLEN: [silence]

ME: I'll just thank you in advance then.

ELLEN: Give him a call and let him know I'm on the way.

ME: Thanks, and call me when you're done.

Today was a shitty day.
Steven is still alive, his mother is in the air and on the way to say goodbye to her second son.
I love who he used to be and the brain he once had.
The dementia makes it all very difficult and because I love his partner so I will continue to help.

If there is anyone who still believes that AIDS is not a death sentence please ask them to email me.

This is a slow and cruel way to die.

This is taking many prisoners.


Anonymous said...

I am so far behind in what has otherwise been a very good day - mental health support-wise - for me.

I've written myself a post-it note to blog about it asap, probably when I get home tonight, but I just want you to know that the miles between us do not take away from the feeling that I am with you, Dean,his mother and all the whirlwind of stuff that is happening,and has yet to unfold, right now.

(((P.O. Housewife)))


googiebaba said...

Hi Housewife,
I'm sorry to hear about all of the stress with your friend's sickness. Try and take care of yourself.

Amie Adams said...

That is shitty! Way to take a stand.

You define good friend...

Anonymous said...

I'm so sorry that life has to be this way right now.

Shelly Kang said...

So sorry. Holding you and Dean and his family in the light...

Noah said...

you really are a good person! xx

Anonymous said...

I love when someone can write about a situation and convey the feeling so well, as you have, that my chest begins to ache. Thank you for your very real, very raw writing. It moves me.

I know from my own experiences that words can mean so much, do so much but with so many words at my disposal, I cannot find the right ones to give you.

I'm hurting with you from here. You are so very capable.

Keep writing. I'll keep coming back to read.


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