As time went on at Hell-Crest Commons, the nursing home I’d been living in since July of 2015 I was slowly settling in. I would work on classes for college online (I was only a couple classes short of graduating with a degree in Professional Writing Studies and a GPA of 3.98 from Elms College), I would go to some of the activities groups, I had gained privileges to wheel myself around the grounds of the nursing home by myself and I would go to the coffee shop and chat with various visitors, people from my unit that I met down there, and people from other units. Some days I would go down to the lobby to sit on the couch and read or work on a personal writing project or make personal phone calls to friends from Facebook or family.
Jillian, the nurse practitioner in charge of my care while I was at the nursing home, put in a consult or the consult about my low blood counts and the doctor confirmed that I had both iron deficiency anemia and anemia of chronic disease due to the brain tumor and my other chronic diseases like my Small Fiber Autonomic Polyneuropathy and my Gastroparesis. They confirmed that I would need weekly treatments of IV Venofer for a month and then monthly treatments indefinitely. My blood counts would need to be monitored weekly. It was decided that I would get my first treatment the following week. I would get a chair van ride down from the nursing home.
Jillian and I began to actually get along. She shared with me that she had a daughter slightly older than me, but close to my age with Down syndrome, but that her daughter had a heart condition and was very ill. She was in a wheelchair too. Jillian was her main caregiver in addition to working full time at the nursing home.
One day Jillian brought me in a small stuffed rabbit. She said she had bought a box of chocolates and the rabbit had come with it and the rabbit made her think of me and all my stuffed animals I always had with me, so she decided to bring it in for me. I was really touched. Maybe Jillian wasn’t as bad as she had seemed to be. She was just a little too quick to judge things she was unfamiliar with and didn’t understand. In many ways, dysautonomia or autonomic neuropathy really defies logic and is a hard disease to understand. When you add to that the small fiber polyneuropathy part, most doctors that aren’t willing to listen and research, just don’t understand it.
There’s a saying in medicine. If you hear hoofbeats think horses, not zebras. Well, that saying is very good for all the horses out there, but us zebras get really screwed over.
Towards the end of my stay at Hillcrest Commons Jillian took on a nurse practitioner student Rebecca, and Rebecca was enthralled by all the intricacies of my illness and care and we became close friends as well. Finally, life was becoming somewhat manageable as long as I just chose to look at the positives, but that was what I chose to do.
One thing that had always been important to me was my Jewish religion. I had grown up going to synagogue (Shul as we called it) every Saturday and every Jewish holiday. Earlier in the year at the nursing home, before the Jewish high holidays had rolled around I had let my mom know that it was important to me to attend synagogue services for those days. My mom had reached out to my cousin Harriet who lived in the area and she had reached out to a woman named Laura who volunteered to bring me to services for Rosh Hashana (the Jewish New Year) and Yom Kippur (the Day of Atonement, the holiest day of the Jewish calendar).
Laura came to pick me up at the front door of the nursing home on Rosh Hashana, and we immediately hit it off. What had started off as a simple ride to synagogue for two different Jewish holidays immediately turned into a close friendship. Laura and I really connected with each other from the get-go. Something about us just meshed. We ended up pouring out our life stories to each other and deciding that we would go to synagogue together every Saturday. She also would occasionally take me places during the week as well.
Life was much kinder to me now that I had a friend to share it with. She even got to know my parents too and encouraged me to try and repair my relationship with them.
While the rules about not talking to my mom on the phone more than three times a week had been in place for a long time, they had never put in any place any rules about talking to my dad. My dad had pointed this out to me the afternoon of the original meeting where they told me I was now homeless when they had walked me back to my room.
“So I can call you whenever I want as much as I want?” I had asked him.
“Well as long as your reasonable about it,” he had said.
So I had been calling my dad daily, sometimes twice a day, and our relationship had been blossoming. I never spoke to him about anything I knew would make him uncomfortable or be triggering, I always kept it light. I would tell him about my online classes, my writing projects that he wouldn’t find offensive. I would even share some of these writing projects with him and he would always tell me how impressed he was with my work which meant a lot to me coming from him, as I had lost track of the number of books he’d written and published, as well as the ones he’s edited. Not to mention all of the articles he’s published including what he’s written for Encyclopedia Britannica in the past, and all the colleagues’ books he’s critiqued. If my dad likes your writing that is one of the highest compliments you can get.
I would also tell my dad about the activity groups that I had gone to that day, the friends I made on Facebook, and whatever else I felt like talking about. He would tell me about his writing, his lectures, his classes he was teaching, conflicts at work, stuff going on with our family, his photography.
For the first time since I had gotten sick at age ten, we had a real relationship again and it was something I treasured. We never brought up my illness or disabilities. He of course still believed those were the product of years of sexual and physical abuse by that family friend, but that was okay, we just didn’t talk about that. I was 24 years old. He was no longer in charge of my medical care, I no longer lived at home. It didn’t matter what he did or didn’t believe. I won’t lie, it still hurt on a really deep level that he couldn’t accept that my issues were real and that he wouldn’t let me move back home, but there was nothing I could do to change that. One thing I’ve learned is that when there is nothing you can do to change other people, all you can do is change how you react to them.
After I had been at Hellcrest Commons for five months I started feeling pressure from the administration and social work.
“Your progress in therapy has plateaued,” Tanya told me one morning when she came in with Jillian and an administrator.
“What does that mean?” I asked.
“It means you have made no new progress in the last few weeks. Lynn says you have made tremendous improvements in the last five months that you’ve been here but that she thinks she has gotten you just about as far as she can get you. Laura feels the same way.” Tanya explained.
“But I can still barely do anything. I used to be able to do so much more.” I cried.
“It’s the nature of your illness. It’s degenerative,” explained the administrator.
“So what does all of this mean?” I asked.
“It means we need to come up with a suitable discharge plan for you.” Explained Jillian. “Your insurance is going to rapidly stop paying for you to be here now that you’ve stopped making progress in rehab.”
I felt a cold chill wash over me as the reality that my life was about to forever change settled into my bones.
“What kind of places are we looking at?” I asked.
“We were thinking of maybe a group home or a rest home or an assisted living or something like that,” explained Jillian.
“I don’t want to go to a group home,” I told her flat out.
“Well, they’re designed to take care of people with physical and mental illnesses.” She explained.
“I’m not going to a group home,” I repeated. Prickling at the mention of mental illnesses. I knew I had displayed no behavior at the nursing home that demonstrated me having a mental illness, yet here was that label being thrown at me again. Yes, I had complex PTSD but my behaviors were, as mental health professionals phrased it, within normal limits.
The next two weeks I spent holed up in my room doing research. I called every number I could possibly find and looked up every assisted living, independent living, room for rent, apartment for rent, rest home, and anything else similar. Every single place I tried turned me down or I couldn’t afford, or had no openings, or was otherwise just not an option.
Even though I told her I wasn’t interested, Jillian called every single group home that took medically intensive clients, and each one of those turned me down as well. After two weeks we met up together, me, Jillian, Tanya, my mom, my dad, the administrator, and the ombudsman who finally decided to show up after all of this time.
“We’re having a really tough time finding an appropriate placement for Becca,” explained Tanya once everyone had settled into the now way-to-familiar meeting room, otherwise known as the Torture Room or the Room of Bad News.
“I have reached out to multiple group homes, but all of them have turned Becca down because of the fact that she requires continuous IV fluids on top of the continuous tube feeds.” Explained Jillian.
“Well hasn’t Becca been on the IV fluids long enough?” my dad asked. “She’s been on them for a long tine and I’d been under the impression that you were going to get her off of them.”
I could feel my heart pick up its pace under my puppy-dog-with-the-bow-on-it sweatshirt. Even though I’d been talking to my dad on the phone daily we never discussed any medical treatment. It had been my assumption that my mom or Jillian or both of them had explained to him that the IV fluids were something I was going to need for the rest of my life, but then again, my dad tended to block out things about my health that he disagreed with.
“Becca needs the IV fluids to regulate her electrolyte levels. It was brought to my attention by the specialists at Mass General that there is no other way to keep Becca stable other than providing her with intravenous fluids and electrolytes. Once she has been stable for a certain amount of time on fluids and electrolytes then we can begin her IVIG treatments which is the gold standard treatment for Autoimmune Small Fiber Autonomic Polyneuropathy But even then she will continue to need IV fluids during the treatments and indefiintely.”
“So then what do we do if no group home will take her?” my mom asked.
“I provided Becca with a list of assisted livings and independent livings,” Tanya said. “Did you call them?” She turned to me.
“I went through the entire list and then looked more up,” I said. “I called those up too. They all either don’t have openings, can’t take someone like me, or cost a whole ton of money that I know I don’t have. I even looked at rooms for rent or apartments but nothing seemed feasible.”
“You can’t live alone in your own apartment anyway,” my mom said.
I bristled at that comment but didn’t bother to respond.
“I have been able to arrange for her to stay another seven days at this facility,” the ombudsmen explained to us. “Beyond that, she is on her own.”
“What’s that supposed to mean?” my dad asked. I could hear the anger in his tone. I smiled at the fact that he was defending me and standing up for me with so much gusto.
“Well, we will have to continue exploring all avenues in the next week and find somewhere for her to go. Otherwise, the commonwealth of Massachusetts considers discharge to a homeless shelter an acceptable discharge plan from a nursing home.”
“I’m going to have to go to a homeless shelter?” I asked incredulously, with fear pounding out a frightening staccato in my chest.
“If we can’t find anywhere else that will take you, yes,” explained the administrator.
“We’re going to keep looking and searching until we find you something,” Jillian tried to reassure me along with Tanya, but the possibility of being sent to a homeless shelter was starting rampant fires of fear in my brain that I couldn’t seem to put out with their reassurances.
“You’ll take me home if they can’t find any other place for me right?” I asked my mom. “You won’t let me get sent to a homeless shelter will you?”
“We can’t take you home no matter what.” My mom said. “We’ve told you this. As long as you have all of those tubes and the wheelchair and walker and everything we can’t take you home.”
“So you’ll let me get put in a homeless shelter before you’ll take me home?” I asked.
“We can’t take you home,” she repeated.
“How will a homeless shelter manage my IV infusions, my feeding tube, my catheters, or oxygen at night?” I asked.
No one answered me.
That night back in my room I curled up around Haley and Buttercup and cried hysterically. How could my own parents be that callous that they were going to allow me to get sent to a homeless shelter where I probably wouldn’t survive because there was no way they could provide the appropriate medical care that I needed to suffice my most basic needs. Was I that bad of a daughter to them? What had I done that was so horrible? Didn’t they love me anymore? Didn’t they care about me? Didn’t they want me to live? Did they even care if I was alive or not? Was it just that they were still in such bad denial?
I had so many questions and didn’t know if I’d ever truly know the answers.
After a long cry, I decided to call Laura.
“I’m going to see what I can do for you,” she had told me. “I have a friend who is a social worker and I’m going to reach out to him and see if he knows anything that can help you. I’m also going to pray for you.”
I thanked Laura profusely before hanging up.
For the next week, all I did was stay holed up in my room on my phone making phone calls. With each additional negative response, I got from my queries more and more buckets of sweat poured down my back. All of my energy went into trying to find a place to go once I got discharged from the nursing home, it consumed every waking hour to the point where it was almost an obsession, but I knew that being sent to a homeless shelter where I would not have a way to run my IV fluids, maintain my port, run my tube feeds, use my oxygen, or my catheters, would be a death sentence.
It’s really scary when your life is so fragile and you depend on so many external factors that are out of your control, to stay alive.
Over and over I hashed out my situation with friends at the nursing home, the CNAs and nurses I got along with, the activity directors, Laura, my friend Rona who was a family friend from way back, my grandparents, and anyone else I could vent to. Everyone assured me that there was no way I was going to be discharged to a homeless shelter, that my parents would never let that happen, that the nursing home wouldn’t be allowed to do that. But they hadn’t sat there, in that emergency discharge planning meeting with me with the ombudsman himself sitting there straight up telling me that a homeless shelter is considered an acceptable discharge place. They hadn’t heard the administrator of the nursing home agree with him. They hadn’t heard my mom say “we can’t take you home” when I had asked her if she would save me from going to a homeless shelter.
As the week was drawing to a close I began desperately broadening my search. I was looking for discharge placements even in Boston and New York and New Jersey, not just the Western MA area.
At the end of the week, Jillian let me know that she still hadn’t found anything and neither had Tanya. I felt a black hole opening up in the pit of my stomach.
“We’re going to take a break from all of our searching for the weekend and then on Monday we’re going to have another meeting. We will figure something out. Do not give up,” she assured me.
I just nodded. I didn’t know how empty her promises were or if they were real or not. I was too overwhelmed to think beyond that.