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 right to me, because it seemed to me that feeding someone for a month would cost a lot more than $100 a month, but I didn’t say anything, I knew my income was only around $750 a month from SSI, but I also knew my parents made over six figures and that they were going to help me out (later I would meet Millionaire Eve who owned Side by Side along with her husband, and I would come to understand that all this trying to get more money out of my parents’ thing was coming from her).
I was too excited about my brand new life to say anything that might rumple up the plans. My mom wasn’t looking like she had an issue with the $900 so I was going to leave it.
After we finished looking at the apartment Chrissy took us over to the main building. My mom carried me down the stairs and I loved feeling so close to her. It was a really nice feeling. I knew to treasure it because I knew as soon as I had PCAs they were going to be the ones carrying me up and down the stairs as my mom would complain that it didn’t feel appropriate to her to be carrying around her 24-year-old adult daughter. But to me, it felt so right. I treasured the feeling of my mom’s warm arms around me, the smell of her Dove Fresh Deodorant, the feel of the skin of her chest and her clothes against my forehead, and the rise and fall of her chest against my cheek. I couldn’t remember the last time she’d hugged me this long so I cherished the trip down those four steps and locked the memory of it into my memory bank so that I would never forget how wonderful it had felt. I’m the type of person that needs physical signs of love, I need to be hugged, kissed, rubbed on the back, patted on the shoulder, stuff like that. My mom has never been good with physical signs of love (at least not since my parents found out that our family friend had sexually and physically abused me from when I was five until I was ten), so we’ve always had a kind of disconnect around that. I was still reliving the beautiful moment of her carrying me down the stairs as we headed over to the main building.
The biggest part of the main building was set up kind of like a diner. There was a big kitchen with a large and high marble countertop wrapped around it. At the countertop were red stools with backs on them. Then the rest of the area had little tables with chairs around them. There were some people seated on the stools at the counter chatting with a woman behind the counter who was busy cooking something, I couldn’t tell what. Other older people who I assumed were residents were sitting at the table, talking, drinking coffee, working on crosswords, reading the newspaper, or staring into space.
The woman that was cooking was introduced to me as Terri the cook when she found out I couldn’t eat she almost dropped the pan she was holding.
“You can’t eat?” she asked me.
“Nothing,” I told her.
“How do you live then?” she asked me.
“I have a feeding tube that goes into my small intestine and continuously feeds me a very tiny amount of tube feed at a time to give me enough food over 24 hours,” I explained. “I also have something called a port-a-cath in my chest and I get sugar, potassium, salt, and fluid that pretty much goes straight into my heart. It’s kind of like a giant IV in my chest.” I explained to simplify it.
“Can you drink anything?” she asked me.
“I can drink clear liquids,” I explained to her, “Only because I have a tube in my stomach called a G tube, and it’s attached to this drainage bag that automatically drains out anything I drink by mouth. As soon as I drink something, it starts pouring through this tubing,” I showed her the tubing that came out of my tube in my stomach, “and goes down all of this tubing,” I showed her the length of tubing between my G tube and the G tube bag, “and then ends up in this bag, “I showed her the G tube drainage bag.
“That’s crazy,” she told me. “I wouldn’t be able to live like that.
“You learn to deal with a new normal,” I explained.
She shook her head.
“I can’t make you a birthday cake on your birthday,” she told me. “How am I supposed to make you a birthday cake on your birthday if you can’t eat?”
“Umm, I don’t know?” I answered, surprised by her question, especially because it was December and my birthday wasn’t until July.
“Every resident gets a birthday cake on their birthday and a little celebration and I make the cake,” she explained. “But I can’t make you a cake if you can’t eat it, that wouldn’t be fair to you.”
“What about popsicles?” I asked.
Terri’s face brightened up again.
“I will get a whole bunch of popsicles for your birthday and we will arrange them in a certain way and sing happy birthday over the popsicles,” she told me.
I smiled at her and told her I thought that was a good idea before we continued our tour.
“Terri takes her job very seriously,” Chrissy explained to us. “She works constantly. Sometimes she’s a little rough around the edges and sometimes people complain she’s mean, but she has a good heart and she means well. She seems to like you, Becca.”
I smiled and followed Chrissy into the next few rooms.
Off of that room were hallways, residents’ rooms, a living room type room with recliner chairs, a sofa, and a TV that was on but everyone in there was kind of staring past it. There was also another dining type room off the main kitchen. Chrissy explained that this room was called the dining room and the main room was called the kitchen.
This dining room had a long rectangular table set up in it with chairs around it, and one circular table with chairs around it. There was also a fake fireplace that had actual warmth emanating off of it with two recliners and a circular end table between them. I immediately knew that this would be a perfect spot to do schoolwork.
I only had a couple of weeks left of schoolwork before I would technically have my degree. Barring some crazy freak incidence of mass stupidity and a crippling case of writer’s block, I was going to graduate with a Bachelor of Arts degree in Professional Writing Studies with a GPA of 3.98 at the end of the Fall semester in two weeks. I was going to graduate in an honors society and graduate Summa Cumme Laude. Both of my parents assured me that they would make certain I would be able to attend my graduation and get to roll or walker across the stage to get my diploma from the president of Elms College at the Mass Mutual Center in Springfield Massachusetts. Laura had promised me that she wouldn’t miss it for the world and even volunteered to be my ride down there.
Although I would technically graduate at the end of December, graduation ceremony would not be until May of 2016. I was already so excited though and was already planning things out in my head.
Once I finished with school I figured I would find some freelance writing jobs, and that fake fireplace corner would be an awesome spot to nurse a coffee and get work done.
Chrissy explained to us that I could come over to the main building whenever I felt like it, but that I would be required to come over to the main building at least three times a day for meals even though I didn’t eat. She just wanted me to show up and check-in so that they could make sure that I was doing ok and didn’t need anything and had some socialization time with the other residents.
In the main room of the main building, Chrissy also showed me the activities schedule which included a resident-run art group that I was interested in and excited about. I had always loved art projects. One of my favorite things had always been oil painting and sketching with graphite. One of my favorite oil paintings I’ve ever completed was a painting I did of a rose I found in a photograph of a gardening magazine.
Chrissy also showed us the file on the countertop where I would pick up my ride forms to give to the chair van driver when I had doctor’s appointments and needed to go in the chair van somewhere.
Then she brought us over to where the elevator was. It was a one-person elevator with a button you had to hold down the whole time to make it take you to the bottom floor or vice versa. I met my mom, Anna, and Chrissy on the bottom floor. There were more resident rooms on the bottom floor, a restroom, showers, a laundry room, a pantry, storage, a hair salon, and the staff office.
“The podiatrist comes to do toenails once a week in the hair salon, you have to put your name on a list if you want them done. A different woman comes to do hair once a week in the hair salon, you also have to put your name on a list if you want your hair done. You can use the hair salon anytime you want as long as it’s not occupied and you don’t use any of the supplies in it like the shampoos and conditioners. But if you want to use the chairs or sinks, they’re yours to use whenever this room is not in use. The same goes for the showers, although you do have a shower in your apartment.” Chrissy informed me.
Chrissy gave us a little more info about rules, introduced us to Eve the owner who seemed nice enough when I first met her, and then asked us if we had any questions.
“When can I move in?” Was the first question out of my mouth. I had seen a glimpse of a brighter future and was being drawn toward the light.
“Don’t you want to think about things for a little bit?” Chrissy asked me.
“I was about to get discharged to a homeless shelter,” I reminded everyone. “If it’s the money, I can help once my SSI restarts when I get out of the nursing home (they had stopped my SSI because I was in the nursing home), plus I can help out even more once I get a writing job,” I told my mom.
“No, it’s ok,” she told me.
“You can move in, next Tuesday at the earliest,” Chrissy told me.
“Is that ok with everyone?” I asked.
“It’s okay with me,” Anna said. “But it’s going to be a little bit before PCA services start, will that be okay with you mom? You’ll have to hire someone to take care of her and pay for them out of pocket until PCA services can start.”
“How long do you think it will take for PCA services to start?” asked my mom.
”Probably about two to three weeks, a month at the most.” Anna said.
“That’s going to be expensive,” my mom said.
“Well, what if we only got someone for three hours a day,” I suggested.
“How in the world would that work?” my mom asked.
“Well, it wouldn’t be ideal, which is why it would only be temporary, but what if someone came in the morning, got me up, dressed, crushed my meds, put them through my J tube, prepped a bag of tube feed, prepped my IV fluid, and put an extra bag of IV fluid in my backpack on ice so I could change it myself later in the day along with saline flushes and alcohol wipes and anything else I might need, prepped J tube meds so I can give them to myself during the day. The night before I would have packed a bag of everything I wanted with me for the following day like my laptop, textbooks, my kindle, my sketchbook, and my art supplies, then the person could just help me use the walker to get to the door, carry me down the stairs and wheel me to the main building. I could hang out at the main building all day and then in the evening, we could have someone come back for two hours. They would come to get me at the main building, wheel me back to my apartment, carry me up the stairs, help me shower, and then do a whole night routine including meds and everything.” I explained.
“That could be a very good temporary solution,” agreed my mom. “I have to talk it over with your dad first because even three hours a day involves a lot of money, but it does seem like a feasible plan.”
My heart pattered for the next 24 hours at the nursing home not knowing what was in my future, but I did a lot of praying that my plan about getting the private duty care for three hours a day until my PCA care paid for by the insurance company kicked in. I could never tell with my dad what he would be okay with and what he would have an issue with. All I could do was desperately try to settle in and wait for the final verdict.