I had been living in the Independent Living section of an Assisted Living Facility called Side By Side a little over a month when a woman named Rhonda called me.
Rhonda was my contact at Adlib who would be helping me with my Personal Care Attendant Hours awarded by Medicaid. In Massachusetts, Medicaid is called MassHealth and the area that I live in uses a company called Adlib for the Personal Care Attendant (PCA) hours.
Rhonda called me to tell me that she wanted to set up a meeting to go over the awarded PCA hours, I was both excited and nervous.
Although I was only 24 years old I had multiple medical issues and disabilities. The assisted living I was living at was called Side By Side Assisted Living and while it was a pretty nice homey place to live it certainly had some oddball characters living and working there.
“Do you want to meet at the main building again?” Rhonda asked me. When she called to set up our meeting.
“Sure,” I agreed.
The following morning I met with Rhonda in the kitchen of the main building of Side By Side.
As usual, Karl was sitting nearby at his table that they made him sit at all day, playing with his two toy cars and trying to get up every few minutes to steal the English muffins off the countertop. Meanwhile, Terry, the cook who thought she ran the place and was allowed to think that by the administration, kept blowing up at him and trying to get Cindy and Mary-Anne. the two CNAs working that day, to sedate him into oblivion, simply because he kept trying to steal her English Muffins and wouldn’t stay sitting at the table she wanted him to sit at all day.
At Side by Side the treatement plan for the dementia patients was to have them sit at a table in the kitchen all day and when they got up to leave the table and wander around because they didn’t want to be bored and sit there doing nothing all day they would get yelled at, reprimanded, and redirected to sit right back down at the table.
Anne was at her usual spot at the end of the counter doing her crosswords with her oxygen making funny spitting noises that I’m pretty sure it wasn’t supposed to be making. Janice was making her usual trips in and out of her room carrying armfuls of textbooks ranging from remedial reading for third grade to AP history and college calculus. I’m pretty sure her mind was too far gone to read any of those books, but she loved carrying them around and making a big show of them like she was reading them and she loved talking about how important education was. Jeff explained to me that she used to be a teacher when she was working. Jeff somehow had the pulse on everything that was going on everywhere. He was always very perceptive and not afraid to ask questions.
When you first started talking to Janice, you almost thought she made sense, but then you would quickly realize that half the things she was saying were just her talking in circles and trying to use big words in ways they weren’t meant to be used.
Lily was sitting at one of the smaller circular tables in the middle of the room just staring off into space silently, unable to speak due to her advancing dementia.
A whole bunch of residents were out on the smoking porch busy, as Jeff would put it, “giving themselves cancer”,
Terry was cooking bacon, toast, and scrambled eggs for breakfast for people, but also as usual paying more attention to everyone’s personal lives including mine.
“So they’re giving you 28 hours a week for now,” Rhonda told me as we settled into the particular little circular table we had chosen near the Crystal Light cooler and the water cooler. “You can use that as 4 hours a day or you can break it up some other way, however, you want to do it, that part is up to you. Right now you don’t have any night hours so you can’t have anyone work from 12 AM to 6 AM. The next thing you have to do is find some PCAs, I would suggest that you find at least 2. That way if you have an issue one day where someone calls out then you have a backup. We always encourage everyone to have a backup. Right now I actually have someone that is looking for a consumer (The PCA program didn’t refer to the clients as clients or patients or anything, we were referred to as consumers and we were considered the bosses of our PCAs, that was the mindset behind how the program was set up) to work for that I think you might get along with really well. She also is really creative, loves crafts, is really friendly and sweet, and isn’t afraid of complex medical issues. If you’re interested I can give you her contact information and arrange for the two of you to meet each other.
“That would be great!” I said.
The rest of the meeting with Rhonda we went over technical stuff like filling out paperwork and learning about the rules and regulations about how the PCA program worked exactly. I was starting to get excited. The amount of support I was going to get was going definitely going to increase, and Rhonda thought that in the future I’d be able to get more hours as well if I needed them (she left unsaid that I would need more hours as my disease progressed and I got sicker and more disabled) and we’d be able to bring other agencies in. All I cared about was staying out of nursing homes at all costs. After my experiences at Hell-crest Commons, I knew I was going to make sure that the rest of my life was spent in a much homier environment, and that I was never going to allow myself to go into another nursing home. I would choose hospice at home over another nursing home.
Once I’d signed all of the papers, and reviewed everything with Rhonda we set up a time to meet with Nan the woman who was interested in possibly being my PCA and Rhonda showed me the PCA database. Then I wheeled myself back over to “my spot” passing Terry who was pretending to wash the same pot she’d been pretending to wash for the last half hour while listening in on our meeting and I settled in with a writing project.
When Jeff came by I put the writing project away and told him how my PCAs were going to start soon.
“That’s cool,” he said, “they better take really good care of you or I’ll have my guys down in New York take care of them.”
“You have guys down in New York?” I asked him smiling.
“Oh I sure do,” he said grinning, “I got guys everywhere, but the ones down in New York, they’re the ones who mean business. When I was doing coke my dealer Q was so scared of the ones from New York, I think that’s why he eventually shot that guy behind A-Mart. He wanted to go to jail so he’d be safe from those guys in New York.” Jeff had told me previously how he used to do coke and even deal it and how he had a friend and dealer Q who had eventually shot and killed a man behind A mart and then gone to jail for life.
Jeff had gotten out of the whole drug scene ages ago to take care of his dad who had had a stroke and needed his help. He had stopped dealing drugs, taking drugs, and drinking completely on his own without any rehab, AA, NA, counseling, medication anything else. He was simply motivated by the desire to take care of his dad and to not allow himself to turn into someone like Q with no morals. It had been years since Jeff had done drugs or drank and he had promised me he would never touch them again.
“I’ve seen what they do to people,” he had told me, “I’m all set with that now. I need my brain to work for me.”
“You sure you should be dealing with people that dangerous that somebody would rather go to jail than deal with them?” I asked Jeff, half-joking, half-not-knowing if I should take him seriously.
“Oh I know how to manage them,” Jeff assured me, “As smart as you are when it comes to books and school, that’s how smart I am when it comes to street smarts, I got it covered. Those guys in New York do what I want them to do.” Jeff insisted as he looked up from his blue remote control car whose engine he had rebuilt with a glimmer of mischief in his olive-green eyes.
Jeff had an answer for everything.
“I’m going to have to see this Nan,” he told me, the morning we were supposed to have our meeting. I smiled inside a little that he cared so much about who was going to be taking care of me. The funny thing was though, that even though it should have been flamingly obvious that he had a crush on me, I still hadn’t picked up on it. I still thought I was the only one of the two of us that was desperately in love with the other and I was terrified to say something and be rejected, so I still kept quiet and secretive about the true way I felt about him and because of that he had yet to tell me how he felt about me. He assumed that because of the age difference I wouldn’t be interested in any kind of romantic relationship and wouldn’t even consider it in the first place.
“I’ll introduce you to her,” I promised him, “just let me meet her first ok?”
“I guess,” he agreed.
Two days after meeting with Rhonda about the PCA hours she set up a meeting for me with Nan. Nan was a really sweet woman who was excited about meeting me and enthusiastic about working for me.
“If we get all of your care done we can even go for walks to the park or go to the craft store and get stuff to work on for art projects. We could do all sorts of things,” Nan said.
I already knew I wanted to hire her.
Nan started working for me the following night. Lesley, unfortunately, told me that she couldn’t afford to work for me for the Adlib rate and so I had my heart broken when I had to say goodbye to her, but she promised she wouldn’t disappear out of my life and gave me her Facebook information and email address. I already had her phone number. I also hired a young woman named Jackie. who was my age and had a whole lot of energy and enthusiasm. She was a CNA and had experience with GJ tubes and I found her on the Mass PCA directory. She had some experience with central lines and catheters and oxygen as well, so that was comforting.
“My previous client was a young woman with a severe illness who was on a ventilator at home. She had a lot of nursing care in addition to just PCAs, she had round-the-clock care. I was her main PCA though, and we got really close. My dad was actually her main nurse which was how I got the job originally straight out of high school. Sadly, she passed away a few months ago. I was too upset to get a new job right away. You would be my first new job since she passed. You remind me a little bit of her. I think we would get along really well.” Jackie had said to me in our interview.
“I think we would too,” I had agreed and called her back a couple of days later after a few other interviews, to hire her.
Nan worked Monday mornings and nights, Tuesday mornings and nights, and Wednesday morning, Thursday nights, and Sunday mornings, Jackie worked the rest of the time. They each worked seven 2-hour shifts. There was a 2-hour shift from 8 AM to 10 AM and a 2-hour shift from 7 PM to 9 PM. If I needed someone at some point during the day for some reason we would arrange for it by planning in advance and cutting out a certain amount of time from the morning or evening shift and using it during the day.
Really, I needed more PCA hours. They didn’t award me enough. Eventually, as years passed, and I got sicker, and it became easier to point this out to the insurance company on paper, I would receive more hours, and then I would end up receiving MassHealth Independent nursing hours which would result in me having just under round-the-clock care like I do now as I write these posts. However, I had to become significantly more disabled before the insurance company would help me out with that.
Even Jeff recognized that MassHealth should have given me more hours.
“How do they expect you to get by with only four hours of help a day when you can’t even dress yourself or get in and out of your house by yourself or move around by yourself? That’s ridiculous!” Jeff said as we sat in his room in between watching Bad Boys One and Bad Boys Two
“Yeah I know,” I agreed,” But at least it’s something more than what I had, I can always appeal. Plus, they re-evaluate me every year, so I can probably get more hours next year.”
“I would fight it this year,” Jeff told me.
“Let me just see how things go for a little bit,” I told him. “We haven’t even really tried yet. Things were working okay with just Lesley, and I had even fewer hours with her.”
“But that was temporary,” Jeff argued.
“Well so is this,” I argued back. “They re-evaluate every year.”
“A year is a long time” Jeff insisted. “A year doesn’t count as temporary.”
“How about this, I try it for three months. If after three months it seems like four hours a day isn’t enough care, I look into securing a disability advocate lawyer and I go after MassHealth for more PCA hours.”
“Okay, I’ll go with that, but I’m holding you to it,” Jeff told me.
“Okay,” I agreed.
I told Nan and Jackie the plan that Jeff and I came up with and they agreed that it made sense. They also felt that I would be better off with more PCA hours.
Life at Side By Side began to fall into a rhythm. I would wake up have Nan or Jackie get me ready for the day, head over to the main building, work on writing and school, then after lunch, if I didn’t have any appointments I would spend a little more time writing before spending the rest of the day with Jeff.
We would watch various movies, he was intent on giving me a movie education on what he thought all of the best movies of the ’80s, the ’90s and 2000s were, as I was apparently movie illiterate. Sometimes we would go for walks where he would push my wheelchair to the convenience store down the street. He would buy candy and I would buy drinks that I would drink and then drain out into my drainage bag. He thought it was the funniest party trick when I would drink a blue Gatorade and then simultaneously drain blue into my drainage bag while drinking. Sometimes he would show me how certain video games worked or I would read him my writing or we would play a card game or play monopoly online. Other times we would just talk for hours about stuff that happened to us. It felt good to share with someone.
Although I didn’t let Jeff know I was in love with him, I made sure to let him know that he was my best friend and that I loved spending time with him. I wanted to make sure he knew how much I appreciated him. But the truth was there were no words for how much I appreciated him, it was too big of a feeling, it surpassed words.
What I managed to say to him was,
“Jeff I really love hanging out with you, I always have such an awesome time, you are such an amazing guy, I am so lucky to have you as my best friend”.
There was so much more I wanted to say.