Jeff, the man of my dreams (although, at that point, I hadn’t told him how I felt about him), was waiting for me at my spot near the fireplace when I got off the elevator and turned the corner into the dining room in the main building of Side By Side Assisted Living. Lesley, my private duty aide, parked me right next to him. He had a big impish grin on his face, but when he saw I’d been crying, his grin melted away and he looked concerned.
Jeff with his impish grin
“What happened Becca?” He asked me.
“I’m not allowed to say,” I told him, “But I’m not allowed to have any men in my apartment anymore.”
“Who said that?” he asked me. “Your parents? They shelter you way too much, you know I-”
I hadn’t even been living on my own for a full week, and already, disaster had struck. About five days earlier I had been discharged from the nursing home that I not-so-lovingly referred to as Hell-Crest Commons where I had been held prisoner for six months, I had then moved into the Independent Living section of Side By Side Assisted Living in Pittsfield. While I had been loving, living at Side By Side, earlier that morning I’d been molested by a man that I thought I could trust. I’d been molested by a man that I thought was my friend.
Not knowing what to do, I had called the main building, and Marina, the overnight staff had picked up and was on her way over from the main building to my apartment to help me out.
Six months after my admission to Hell-crest Commons I was finally preparing to leave. I wasn’t going home. My relationship with my parents had changed completely. But I was preparing to leave. My feelings about the situation were very mixed, but I was very happy that I would no longer be living on a medically complex floor of a nursing home. No matter how nice and buddy-buddy Jillian the nurse practitioner at Hell-crest Commons had tried to become with me, I would never be comfortable with her. Not after everything she had put me through.
However on Monday, the day before my official discharge date, she found me in my room early in the morning and pulled me into her office.
“Can you transfer yourself into that crappy nursing home wheelchair and meet me in my office?” she had asked me.
In December of 2015, I was finally discharged from Hell-Crest Commons, the nursing home that I’d been living in for the last six months, and I had moved into the Independent Living Section of Side By Side Assisted Living where I would be getting something called PCA care which basically meant people that I chose myself, and that I was the boss of and would train would be coming into my apartment at Side By Side to help take care of me. because it would be 2 to 4 weeks before the PCA care kicked into effect my parents had agreed to pay out-of-pocket for a private duty aide until then.
Lesley, the CNA who was going to be my private duty aide, was right on time to meet Christy, my mom, and me, over at my apartment on the evening of the Tuesday I moved in. She drove a … Find Out What Happens Next
My future was looking brighter than it had looked in a very long time. After six long months, I was getting ready to leave Hell-Crest Commons, the nursing home I’d been imprisoned in.
Side By Side, where my mom, Anna (the contact my friend Laura’s social worker friend had given me) and I were interviewing with Chrissy (the nurse manager)seemed like it would be the perfect fit for me. Especially because Anna was getting me the special PCA (personal care aides) services that MassHealth (Medicaid) provided to help take care of me and help me function and be more independent without needing to rely on my parents for everything.
My mom was discussing rent and pricing with Chrissy and Anna. Chrissy was saying that normally the apartment was $1000 a month, but because I didn’t eat anything she would bring it down to $900 a month. That didn’t seem quite … Find Out What Happens Next
About an hour earlier I had arrived at the only rehab/nursing home in the area that would take someone as medically fragile and medically complex as I am. The nursing home was called Hillcrest Commons, but I had started to call it Hell-crest Commons. From the moment I rolled in the door I knew I was in trouble, but when I med with the nurse practitioner that would be in charge of my case while I was there, her name was Jillian, I had full force alarm bells going off as loud as possible in my head. She basically told me that my disease wasn’t really as bad as I thought it was and that I didn’t need my tube feeding or my IV fluids. I knew this was wrong, I knew what the leading experts in the world on my disease had said about my treatment and I was … Find Out What Happens Next
After having been at Hillcrest Commons Nursing home for three months and having a meeting about my progress I was feeling devastated. I had just found out that my parents were kicking me out of the house because I too was sick and that unless I found a way to get rid of my GJ feeding tube my port-a-cath, my oxygen (that I used overnight and occasionally during the day), to stop using catheters, and got out of my wheelchair than I would not be allowed home. According to the top specialist in the world on my condition, I was just going to continue getting sicker and I would never be able to eat by mouth again, would continue to lose mobility, would never be able to urinate on my own again, and would need oxygen more and more as my disease progressed. This meant I would never be allowed … Find Out What Happens Next
Living at Hell-Crest Commons was a nightmare. After a three-month-long hospital stay at my local hospital for a flare up of my autoimmune-mediated small fiber autonomic poly neuropathy (that was getting worse and worse every few months) I had gotten really deconditioned.
“You need a whole lot of PT and OT to get you back to a point where you can function at home and in the community,” the doctor and case manger both had explained to me months ago. My impression of the situation was that I was going to Hillcrest Commons for a few months for therapy and then going back home.
After three months at the nursing home, we had a big meeting and they dropped a bombshell on me. My parents weren’t going to let me come home. They didn’t want to take care of me anymore because they wanted their ffreedom. I was a burden … Find Out What Happens Next
The crazy primary care provider at Hell-crest Commons, the nursing home I had been living at for a little over three months was in the process of killing me. She was trying to wean me off of my life-sustaining IV fluid infusions that I ran all day and night through my port-a-cath in my right chest. Over the last two weeks I had been weaned from 2 liters too 1.25 liters and each drop made me sicker and sicker.
Three days after Jillian took me down from 1.5 liters of my special combination of IV saline, potassium, dextrose, and multi-vitamins to 1.25 Liters a day, they had to rush me had been rushed lights and sirens to Trauma Room One of Berkshire Medical Center. It took them a while too stabilize me in the ER, but once they did they brough me to my room in the ICU.
Life is a funny thing, you squeeze onto it too hard and it slips out of your grasp.
Starting from when I was eight years old I’ve been sick.
I had my first hospitalization and my first feeding tube and my first surgery in the year 2000 at age 10. In 2012 I had a tumor removed from my brain. In 2013 I was life-flighted from my local hospital to Mass General Hospital to have a brain bleed repaired. In 2014 I became so incapacitated by a mystery illness that obviously went deeper than just gastroparesis alone or just a brain tumor alone, or just a neurogenic bladder alone, that I spent 5 months at Mass General hospital getting stabilized and getting tested until we figured out what was wrong with me. In the spring of 2015 I had spent three months at my local hospital for a bowel obstruction … Find Out What Happens Next
