The Smiley Smile Message Board

Hey all,
I haven’t been around for a couple of reasons. 1. This place got pretty stressful for me after the 2016 election. 2. My sister had an accident about a year and a half ago.  We don’t know what happened, but I went to her apartment in NY after not hearing from her at the holiday (thanksgiving). The doorman gave me a key, saying he hadn’t seen her in a few days. I went up and found her on the floor. At first I thought she was dead, but then she groaned. I quickly called 911 and she was taken to the hospital where, after 16 hrs in emergency, they told me she had hematomas on her brain and they were sending her to ICU. After another day, they said she would likely not regain consciousness and we should prepare to make “decisions” about life support. My mom and brother flew to NY, but before they arrived, she regained consciousness. She seemed to improve for a bit, but then had a seizure and has not improved in a year. She is conscious but has no memory, no motor skills (can’t sit up or eat on her own, for example), no evident cognition, no ability to speak coherently. She needs 24/7 nursing and makes frequent hospital visits for seizures, etc. She’s in a nursing home. She sleeps, screams, and cries. That’s it, for a year.

I am her guardian, which means I’ve had to deal with sorting out her finances, Medicaid application, etc. I also drive from MA to NY every weekend to see her. I’m working with lawyers to try to move her to MA, but with a Medicaid patient, this is extraordinarily complicated.

Some brief policy comments: in the US, if you have a long-term disability, you have to go broke first to get coverage - insurance does not pay for it other than Medicaid. Consequently, if you do someday recover, you will be destitute. It’s appalling.
Second, the bureaucracy is such that you pretty much have to pay 15K or so just to have lawyers explain the process.

My life is completely absorbed with this, and I probably need psychiatric care myself, because I feel myself slipping into depression. I think finding her affected me in ways I haven’t processed and her state is like having a family member die every day over and over. The death has happened in some sense but it cannot be mourned.

The only light: Judy Garland and The Beach Boys are the only things I’ve found that give her moments of respite.

My heart goes out to you, Emily. Your poor sister. Poor you.

You really have got a lot on your plate. In America, of all places. You are in my thoughts.

Thank goodness for the Beach Boys (and Judy).   

Please take care of yourself. You can't be there for your sister if you're not there for yourself.

Point 1. was the reason I left her for a while. I came back when I felt a little safer.

Hang in there. And, hang ten, when you are able.

Thanks guys. Sorry for dumping but it feels kind of good to have dumped.

You told about sister few years back in message to me. Not good situation, especially since it's family member. You should join forces with entire extended fam to deal with it. Take turns maybe. When you deal with it single, it may take toll to you mentally & physically. 2 cents. Glad tidings to you, eventually.

Edit. Isn't it cool that Beach Boys music helps? There's therapeutic effect to it. Carl stated about mental hospital patients listening to Smiley Smile in interview. Splendid, if you think about it.

This is terrible to hear, Emily. I'm so sorry for everything you and your family are going through. It is good to have an outlet to discuss these things, as you say. Please feel free to continue "dumping" information here if you want.

Emily, it’s nice to hear from you. I’ve definitely missed your posts. I am sorry to hear about the troubles in your family. Sometimes ranting about our troubles is the only thing that can clear your head, so please. Feel free to dump anytime the stress gets overwhelming.

Rob

Hey, Emily, take the book recommendation - buy & read New York Times bestseller about NII's daughters OTMA by Helen Rappaport. It'll give you good free time & distraction, really well-written, well-researched, with many footnotes/ references book. & it shows that the author cares about the subject she writes about.
/tiny recommendation

Hi Emily, I tried to send you a message via PM but not sure it went through.  Let me know if you received it.  Peace!

Oh Emily I am so sorry! Bless you for giving of yourself in this situation . (I'm in a Caregiver group and have found out there how many family members can't or don't want to deal with the near constant stress.)
Yes, aren't the Medicaid rules dreadful? Actually, positively sinful, as jk posted earlier, "In America, of all places." And this administration wants to make cuts to Medicaid. Arggh!
 You must make sure to take some time for yourself. Lose yourself in an interesting book such as RR1 suggested. If a good weather day, take time to enjoy sitting outdoors for a few minutes, listening to the birds and the breeze through the trees.
And yes, the Beach Boys, particularly Brian's songs, have such a calming effect.

That's why we're here. Let us know how you're doing once in a while. :)