Tuesday morning a woman from a place called Adlib came up to my room to introduce herself to me and do an intake meeting. She was a sweetheart. Her job was to figure out if I was appropriate to get support serviced from Adlib one of which would be getting into an Assisted Living called Side By Side. For the last six months, I had been living on the intensive medical/Ventilator floor of Hell-crest Commons, but now they were kicking me out because although I had made a whole ton of progress in PT and OT I had made about as much progress as was humanly possible for me in my condition and my progress had plateaued. I had spent over two weeks trying to figure out where I was going next, now that I was going to be discharged from the nursing home, as my parents were refusing to … Find Out What Happens Next
My nerves were humming so loud that I could feel them vibrating from inside of me, or maybe that was just my heart that was still always beating too fast no matter what medication I took or how much IV fluid got infused into me.
After six months of living in a nursing home that I not-so-lovingly referred to as Hell-Crest Commons I was going to visit Side By Side Assisted Living and meet with one of the Nurse Managers there, whose name was Chrissy. Tanya the social worker had also arranged for my weekly scheduled visit with my mom to be that day as well. I had no idea what to even begin to expect.
Side By Side was just a few minutes from the nursing home and it was a big main building that was actually two houses combing together and then a bunch of other houses in … 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
My life hung in the balance as I waited for 24 hours to hear back from my mom about whether my dad was going to give the final yes or no verdict about whether or not I could be discharged to Side By Side Assisted Living and have some sort of future.
I needed my parents to pay for private duty CNA care, three hours a day for the next 2 to 4 weeks so that I could go the assisted living. Otherwise, Side by Side was completely off the table because I needed someone to be able to carry me up and down the four steps leading into my apartment in addition to helping me with all of my care. If my dad said no to this, I was going to end up in a homeless shelter. Because I am 100% dependent on IV fluids, tube feeds, oxygen … Find Out What Happens Next
During a three month long hospital stay for a flare up of my autoimmune-mediated small fiber autonomic polyneuropathy I went downhill so fast that I couldn’t even sit up on my own, I could barely lift my head off the pillow some days, let alone bear weight and transfer into my wheelchair, I went in ambulance for an hour-long ride down to Hillcrest Commons the nursing home/rehab that I was supposedly going to for a few weeks or months for intense rehab, so that I would get enough strength to function outside of a hospital or nursing home environment.
Hillcrest Commons is located in Pittsfield which is in the Berkshires (part of Western Massachusetts) so it’s a very beautiful location. It’s right on the border of upstate New York and it’s near the Vermont border as well.
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
I had been at Hillcrest Commons (Or as I liked to refer to it, Hell-Crest Commons) for 3 months. Jillian, the nurse practitioner overseeing my care, decided that we needed to have a meeting with all of my care team and my parents.
The meeting was an absolute disaster.
Every time I tried to talk to Jillian she insisted that my disease wasn’t as bad as I said it was and that she could get me off of most of my meds, off of the IV fluids, get my port removed, get me eating again, get my GJ tube removed, and get me walking with no assistive devices. She had shared this viewpoint with my parents and got them so full of hope that they were willing to do just about anything with me or to me in order to get me there.
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
A meltdown in my room of Hell-Crest Commons, the nursing home I’d been living in for three months, had prompted that awful nurse practitioner, to send me to the hospital to get evaluated by psych crisis. Jillian was my primary care provider at the nursing home.
Who wouldn’t have had a meltdown after that meeting though? At the meeting they told me that I was faking all of my illness because I liked being sick and that she was going to stop my IV fluids. My IV fluids were keeping me alive. They were one of my main treatments, but that wasn’t even the worst part of the meeting.
At the meeting they had dropped the bomb on me that I was never allowed to go back to living at home.
After the meeting I went back to my room where I couldn’t stop crying. Tanya the social worker, and … Find Out What Happens Next
