9/25

Hi Guys,

My Mom is doing good! Don’t want any of you to be concerned. She seems stable. She is getting Vital Stimulation on her throat for an hour every day to try to get her swallowing food. She is continuing to progress and knock my socks off every single day. She can read, very well. She is starting to remember from day to day. But she is still confused, and as always, more so when she is sleepy. Today during my visit she was VERY sleepy. When I walked in she told me she was just attacked by a scorpion. Of course, I laughed like an idiot, asked her if the scorpion looked like this (insert creepy face and pinches here :).  By the time I left, she was making pretty much sense. I asked her, like I always do, to move her leg. She said, please don’t be sad if I can’t move it. It seems she is starting to realize that her arm and leg are not working. For a while she seemed to be in denial. But she said she does her best every single day 🙂 and I told her that is all we can ask for. She is bored, sick of being in there…and has enough sense to know what is going on, and seems very sad. She has every right to be sad. I was hoping either she wouldn’t have a clue what was going on, or be “perfect”. We are trapped in the middle, where she knows just enough to know that this sucks. She apologizes to me every single day for putting me through this. Typical Mom, worried about everything and everyone else. Just one of the million reasons I love her so much.
I am having a problem. It is pretty big and I need everyones help/ideas/suggestions….
Last week we were told that once Mom was successfully decannulated (no trach) that they would be looking to move her to a skilled rehab facility. We were told to pick out a nursing home/skilled rehab facility and that Aetna was to provide 100 days of skilled rehab coverage in one calendar year. No problem. Picked Phoebe, Phoebe told us they had a bed and could take Mom. Last Wednesday GS told us Phoebe had a bed and that Mom would be moved Tuesday (TODAY) or Wednesday of this week. Great! The end! Yesterday at 12:30 PM I was contacted by GS and told that not only has Phoebe declined my Mother, but Aetna is not going to pay for the 100 days of skilled nursing because my Mom is not improving and that Mom’s last day of approved coverage is today. Aetna is releasing Mom to custodial care. Needless to say we were/are shocked. Aetna is returning no phone calls. No one knows what is going on or what is going to happen.
In the mean time, I have contacted the President of GS…he is useless but seems concerned and friendly. He said that he has never heard of anything like this in his time at GS. I have contacted the Case Manager, who has been out since Thursday and in her 30 years has never seen/heard anything like this. I have been in touch with every one you could think of at GS. We went to Phoebe directly and no one from admissions even took the time to tell us why they told us my Mom was a perfect match, and suddenly her condition is too “sever”. We have called 6 different rehab/nursing homes, none of which will accept my mother even if Aetna does pay for the 100 skilled days, because of her severity. This is strange to me, because each place originally said they could take Mom, however, when GS faxed over additional information, they all called me back to deny her. We have contacted the PA Insurance Department this evening and are waiting to hear back. We have contacted the Brain Injury Network and they can not help because the injury was not a result of direct trauma. We have contact 2 other brain injury advocate groups in PA, neither of them could help. We need help. Ideas. Connections.
I am 2 seconds away from contacting Pat Toomey, Charlie Dent, Jen (Forget her last name 🙂 as well as the news papers, radio stations, news stations…I will not rest until I have her ass talking to Matt Lauer on the TODAY show. I know it sounds funny and dramatic, but are these the drastic measures our nation is making us take to get my Mother, who worked her butt off since she was 17 the health care and covered she has paid for and deserves? It is not bad enough that she is paralyzed, missing her skull, confused, bed/wheelchair ridden…but they want to take everything she has worked her whole life for, away from her. Makes me sick to my stomach.
My husband and I have no life. This is what we do day in and day out. I miss just being a Mom. Just being a wife. Miss my house. Miss my stuff. I am scared how this is going to end up. I am scared for my Mom. Scared for my family. Scared for me. Please help if at all possible.
Thanks,
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