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 take me home because they wanted along time now that all their kids were growing up. They also didn’t want me at home with all of my tubes and pumps and wheelchair because it disturbed them. So here I was, interviewing for an Assisted Living at 24 years old.
Anna had a million and ten questions for me and I did my best to answer all of them.
“Because you are so medically fragile we can’t have you in the regular assisted living section of Side by Side. I already know that, even before talking to Chrissy the nurse manager there.” She explained to me.
‘What does that mean?” I asked, getting worried.
“The assisted living section of Side By Side is where people have a room in the main building and the CNAs or techs provide basic care like bathing, giving meds, getting dressed, stuff like that. They’re not trained to do things like give medication through a J tube, empty a G tube drainage bag, or hook up IV fluids.”
“So what would we do then?” I asked feeling like we had just hit another roadblock and I was about to be back to square one (or cot one in the homeless shelter).
“We find a loophole,” Anna explained to me. “What we’re going to do is we’re going to get you into one of the independent living program houses and we’re going to get you PCA care.”
“What does all that mean?” I asked, relieved that she seemed to have a solution and have all of this all figured out.
“With the independent living program, you will essentially have your own apartment but will join the main living space to check-in at mealtimes or when you feel lonely. The CNAs at the main building won’t be doing much to take care of you, but Chrissy will be setting up all of your rides to your appointments and checking in with you frequently to make sure that you have everything you need. Once a week someone will clean your apartment for you. In addition to all that, I will be setting you up with something called PCA care.” Anna explained to me.
“So what is this PCA care?” I asked.
“We will match you up with a contact person at Adlib called your skills trainer. We will do your assessment with a nurse and an occupational therapist and evaluate how many hours of help you need a week with things like, taking your meds through your J tube, setting up your J tube feeds, setting up and running your IV fluids, emptying your G tube bag, setting you up to straight cath, helping you get dressed and undressed, helping you brush your teeth and shower and get washed up, making your bed, doing your laundry, doing daily light cleaning, transferring you in and out of your wheelchair, helping you walk with your walker, getting you back and forth to doctors appointments, doing your shopping and stuff like that. Once we figure out how many hours of care you require we will give you a searchable database called the Mass PCA directory and you can look through it and find different people who you can interview for the positions of being your PCA. Your skills trainer can help you do the interviews or just coach you beforehand on how to do the interviews. Once you do the interviews you can pick out who you want your PCAs to be and set up a schedule with them. Your skills trainer will teach you how to fill out their timesheets and all of the other paperwork that will be needed for them to get paid for taking care of you every other week. You are considered their employer in this whole situation. You are not their patient or their client or anything like that. You are their boss. You can train them to do the skills necessary to take care of you. If you need help with that, you will also be discharged with visiting nursing and the nurse can help train them as well. Your skills trainer from Adlib can also help you train them. Make sense?” she asked me.
I nodded. This seemed like a plan that would actually work. I was scared about living on my own for the first time, but I was going to have a lot of support in place around me, and everybody needs to grow up sometime. It seemed kind of funny that I would be receiving more intense care by going to the lower level independent living area than I would at the assisted living area, but loopholes are good things sometimes.
After Anna finished filling out all her paperwork and doing her intake with me, I had another surprise visitor. This one was a man named Chris from a place called National Seating and Mobility.
“I’ve been told I need to create you a customized wheelchair,” he explained. “I heard you’re flying the coop and need a new set of wheels”.
“I didn’t know I was getting a new wheelchair!” I said surprised.
“Well Lynn from PT and Jillian your provider put the orders in a few days ago and here I am to do my job!” he told me.
“Well that’s really cool,” I said.
He must have measured me in every possible direction.
“I want the most lightweight chair there is,” I explained to him, Thinking of my middle-aged best friend Laura and how I wanted her to have an easy time getting my wheelchair in and out of her vehicle.
“I can do that,” he agreed. “Based on your measurements I have to go with one of the pediatric models, but I can get you a super nice one with a memory foam cushion, an IV pole for your feeding tube and IVs, comfy armrests that adjust and go on and off, wheels that can pop on and off, leg rests that can pop on and off, really lightweight, and the cover on the seat cushion will be washable.”
“That sounds awesome!” I told him.
“What color would you like?” He asked me, and then opened up a key ring with about twenty colors on it, I was stuck between candy purple and hot sparkle pink for a moment, but then quickly went with hot sparkle pink.
“The wheelchair will take at least a month to be ready, in the meantime, Jillian says she’s got you covered,” Chris explained to me. “I will reach out to you when it’s done, but I’m also going to give you my number so you can reach out to me if you have any questions or if you think it seems like it’s taking too long. With your MassHealth for insurance, you are eligible for a new chair every five years or if something changes in your mobility status or what you need in a wheelchair.”
I thanked Chris profusely. My luck was finally turning. It was about time.