9/29

I really need your help. It is go time. PLEASE help me. I need more ideas on who to email, and I NEED you guys to please, either forward my email or write your own. It doesn’t take long. I am out of ideas, and I am so desperate.

 Hello,
On July 15, 2012 my 57 year old mother suffered a stage 5 subarachnoid hemorrhage, or the worst brain aneurysm possible. I would like to say this was the nightmare, but the nightmare had only just begun. They did not think my Mom was going to make it, and neither did I. She was in a coma for days. Things were really bad. All they could tell me was that she was very very sick and only time would tell how this would play out. She spent her worst days at Lehigh Valley Hospital in Allentown and they were amazing. They saved her life. But they told us that this rehabilitation was going to take 1 to 2 years. YEARS! That’s ok, she is alive and we have nothing but time 🙂
My Mom’s brain aneurysm was successful coiled. A few days later she received a craniotomy to allow for her brain to heal and swell. And VERY slowly but surely my Mom started to get better. The bells and alarms started going off less and less. The stacks upon stacks of fluids, medications and pain killers started to disappear. She eventually began responding to painful stimuli. Then she began opening her eyes. Slowly she began following one step commands. She eventually started breathing above the respirator. And then she received a tracheotomy. And then she was breathing on her own. There were many setbacks and complications along the way, but my Mother is a miracle.
My Mother needed a lot of work, but the NSICU was no longer necessary. She was sent to Good Shepherd Rehab hospital, also in Allentown. They too were incredible and I am forever grateful for them. She entered there facility paralyzed on her left side, with her tracheotomy, on a feeding tube, very confused. During her first stay, she experienced what they believe was a seizure. She was sent back to Lehigh Valley, where she stayed for about 2 weeks. During her stay at Lehigh Valley she did receive a permanent shunt. It seems to be working wonderfully, and she ended up returning to Good Shepherd. At GS she received at least 3 hours of rehab daily. She had occupation, and physical therapy for an hour each day. She had speech therapy for a half our and then began a program called Vital Stim which are basically electrodes attached to her throat to help her learn how to swallow. She began to TALK! Oh how I missed her voice. Her long term memory became crystal clear. Her short term memory was blotchy, but she was starting to remember bits and pieces from day to do. She started holding her head up, straight. She started laughing, smiling and joking. She remembered ME. Finally. She asked about her grandchildren, her home, her dogs, her work. She wanted to know what happened to her and why she was there. She began to know what month she was in, what the year was. She started reading and writing. About 2 weeks ago she was successfully decannulated, which seemed to lift her spirits to even new heights! She seemed to feel alive again! And the day she was kicked out of GS for not improving she passed her swallowing test and was allowed to start eating again! This was HUGE. Pureed foods, but real food none the less. All this from one beautiful little miracle that wasn’t supposed to survive. All of this during her 24 days at Good Shepherd. Aetna was supposed to provide my Mom with 100 days of skilled rehabilitation so we began looking at skill rehabilitation facilities. We agreed on a facility (Phoebe Home) and we were excited for the next chapter of my Moms incredible journey! Tuesday or Wednesday she would be well enough to leave a hospital and she needed as much rehabilitation as possible.
This never happened. She was forced out of Good Shepherd by her insurance company, Aetna.  Aetna is the insurance company provided by Bank of American, her employer for nearly 10 years. Aetna claimed that my Mom had reached a new baseline during her stay at GS. Aetna claimed that my Mom was not getting any better and she was no longer allowed to stay at GS. I was told on Monday the 24th of Septmember by GS that Tuesday, the FOLLOWING day was my Moms last day, Aetna would no longer cover her care. She was not approved for any of her 100 days at a skilled facility. My Mom was going to be released to custodial care the following day, and she would need to pay for it with her own money. Are you kidding me.
While I lit a fire under GS to make things right, I was crumbling. My Mom, worked her entire life, since the age of 17. The most giving, kind soul you will ever meet. The most beautiful woman inside and out, was being kicked out, with no where to go. I was on the phone with Aetna, leaving message after message ~ no one would return my calls. GS was on the phone with Aetna, and no one would return their calls. Eventually we did get approval…for one more day at Good Shepherd and 7 days at a skilled rehabilitation center, as a courtesy to ME so I could come up with a long term plan for my Mom. Are you kidding me? My husband and I called rehab facility after rehab facility. We used Aetna’s “approved” list and we were denied, by Phoebe home, by Westminster, by another place, another place, another place, and another place. Over SIX rehab facilities denied my Mom because her current condition was too SEVERE. Too severe to be accepted by a rehabilitation facility, yet Aenta is ready to release her to custodial care?
She was finally accepted by Valley Manor in Coopersburg. If all of these other places are denying her because of her severity, why would Valley Manor take her in? Are they that good or do they just want her money. At this point, we don’t really have time to find out. They are kicking my Mom out of GS, and she needs a place to go. I went to tour Valley Manor. The place gave me the creeps instantly. During my tour I did not see any nurses! I saw a light blinking above someones door and no one was responding (ended up the person fell in the bathroom and my tour guide had to find someone to help).  I knew in my heart, it was not the place I wanted to send my Mom, but what choice did I have? Everyone was denying her, I would leave her condition on an answering machine and no one would call back, and I had less than a day to make a decision. Valley Manor it is.
On Wednesday I went to Valley Manor to get things signed up. The entire building smelled of smoke. I did not like the feeling I had about Kathy, the woman in admissions. I was signing forms, and she was not giving me copies. I asked for a number to report issues or grievances and she could not and would not provide me with one. I went to my Moms rooms to wait for her arrival and the walls were dirty. The bed was small, will no rails. The comforter was from the 70’s. Her TV remote did not work. The place was horrible, and tears were streaming down my face until she arrived. They had a lot of people check her out, report anything they saw on her entire body (they keep repeating no marks, no marks, GS took really good care of her). Took her compression stockings and pants off, and left the room. That was it. I found her discharge documents in a black plastic bag with all of her belongings and no one even asked about it. I found those same documents on her floor, still in the confidential envelope yesterday. It took everything in me to not pick her up and carry her out the front door.
Today was my worst experience yet. I went to visit her today, she was in the hallway, in a wheelchair that looks like it is a welded lawn chair. It is horrible. She was in a dirty shirt. Her feeding tube was out and just laying on her lap. She immediately did not seem right. I began speaking with her and her breath smelled. I mean BAD. Never smelled like that before. She instantly began telling me that her hiney was burning. This woman never complains. When she says something is burning, it is burning. I went to the nurses station and the only “nurse” that was there completely ignored me. I ended up flagging some random woman down. She fetched my Mom’s “nurse” and said whats the problem. I said her butt is burning. She said, well she hasn’t been sitting in her chair long but maybe there isn’t enough padding on her chair. I said maybe she went to the bathroom in her depends and it is burning her bottom. She said, maybe, and walked away. I then stepped past some random elderly woman sleeping in my Mom’s room entrance and went in to meet her new roommate. (They moved her since she arrived to be closer to the nurses station) The bed looked really weird and there was a folded up floor pad on one side, and a floor pad on the ground at the other side. I said why does the bed look like this to Molly (she is leaving the facility on Tuesday) and she said because your Mom (who is missing her SKULL) fell on the floor and I needed to yell for help. My heart sunk. I found someone who then told me not to worry, she just “slide” off her chair and she was fine. They were going to call. OMG. I them begin talking to my Mom. While I am doing so, lights are blinking above 2 doors meaning patients need help, and no one is responding. Two different woman and screaming from their rooms that they have to pee and no one is responding. A nurse enters and room, closes the door and the woman in the room is yelling OUCH, OUCH, OUCH from the top of her lungs. I try my hardest to blink back my tears, and look at my Mom and her spark has disappeared from her eyes. She hasn’t smiled. She has nothing to talk to me about. She feels weird, and asks if her medications have changed. She then proceeds to tell me that she is going to die in there. I said Mom I SWEAR to you this is temporary, this is not the end. She looks at me and says ok (she does not believe me). I ask her what she is thinking about and she says nothing. She doesn’t need to think in there. I ask her what day it is, she says it doesn’t matter. I say Mom, PLEASE tell me what is wrong, what is going on. She said, in this place, I have given up. Dana, I have given up.
And this is where my story stops. I need your help. I have no idea what to do. I have called everyone I can call. I have spent days and days on the phone with Aetna and Bank of America and no one is helping me. My Mom is dying because of this. She has given up on life. In just 3 days at this horrible facility she has quit fighting. I am 32 years old. I have been living in my Mom’s house since this occurred, with my husband who travels to our home in Texas, my two babies and a suitcase worth of clothes. I have run out of ideas. I have run out of hope. I need help. PLEASE HELP MY MOTHER. Please look at the pictures of her. Please remember she is a human being and she deserves whatever it will take to get her better. I beg you, from the bottom of my heart. Please help me, help my Mother.
Thank you for your time,
Dana Miller
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