Family Corner

In Patient at Shepherd Center, Aug 1 – Oct 15, 2004

Arriving at Shepherd Center in Atlanta, Georgia was like being welcomed into a new family. While Darren was admitted into the ICU (standard protocol, I was told), I almost immediately met two other Moms whose sons were already in-patients. I can still remember the hugs and the tears we shared.

As others who have been though similar situations can attest (or maybe I’m the only one whose brain is foggy!), a lot of what happened in the beginning is a blur. Who did I meet first? What were we told? What were we supposed to do? What I do remember is that a wonderful volunteer drove us to the little apartment that Shepherd would provide to us free of charge for 30 days. It was a few blocks away, and we were advised that it was OK to walk to Shepherd from there in the morning, but not at night – it wasn’t all that safe after dark. John, Ari and I were trying to get settled and I set out to clean that apartment top to bottom. I don’t remember if it really needed cleaning or not; but I knew it would help if I scrubbed and scrubbed so I didn’t have to think about anything else for a few hours.

We each had a small bag of clothes – my friend Lucille went to my house before we left Philadelphia and picked out a few things I could have with me for the trip. I had been home only one day during the 10 days in Philadelphia, and didn’t know at that point that I would need enough clothes for several months. And as I didn’t go home for a month or more to get other clothes, I wore what I had day in and day out until they were practically falling apart. We didn’t have much in that apartment, but we were there only for sleeping and showers.

I tried to write everything down that we learned, and I still have those notebooks filled with information, doctor’s names, medications, etc. In addition to all of the medical information, I tried to keep track of who came to visit, what gifts we received, who called. I knew I couldn’t trust my memory to remember all those who I would need to thank later on.

Days were a whirlwind of doctors, therapists, nurses, aides and specialists. Darren had every problem in the book, including high fevers for days that went unexplained. No one knew why. He had C-diff at one point and had to be moved into isolation. He couldn’t go to therapy for fear of spreading the virus. Once he was on medication for a specified period of time, he could go to the therapy room, but everyone had to wear yellow gowns. It was horrible. Darren also had his fair share of bowel accidents and diarrhea. He was light headed and dizzy. He had such dry skin on his hands and feet that a vinegar solution was applied and he was all wrapped up. I remember thinking he smelled like salad dressing! One particular weekend that some friends were visiting from New Jersey he developed a blood clot in his leg and was not allowed out of bed the whole time his friends were there. One doctor told me that it was good Darren was having all these problems while he was there; when he went home, they’d be all behind him. That did turn out to be true, but it was hell dealing with one medical issue after another, on top of the paralysis.

When friends visited and stayed with Darren, I would take a break. I’d go to the gym on site and work out; I’d take long walks in town; or spend time in the Shepherd library reading everything I could find that might be helpful. Days were long and nights were short. One hundred percent of my energy was focused on helping Darren in some way. There was still SO much we did not understand. While I stayed in Atlanta the whole time except for one weekend at home, John & Ari traveled back and forth every other weekend or so. Ari missed a lot of school days, but the administration and teachers made sure she was able to make up whatever she missed. John stayed in Atlanta for about 2 weeks in the beginning, and his office staff kept things running. It was a frenzied, harried, scary time.

One of the reasons we chose Shepherd was that they had a lot of programs for teenagers and young adults. They scheduled outings for groups of clients and got them out and about. Some included the parents and/or family members; others were meant to give us a break while giving the patient some experience on their own. We went to the shopping mall and the movies together. Darren went to one of the local colleges and also to a farmer’s market of some sort. I think I walked many miles that day, wandering through streets and stores aimlessly, trying to pass the time until he came back. It was tiring to be with him all day, but I wasn’t happy being apart either.

One of the day trips was to the airport, to do a “trial run” for those of us who would travel home on a plane. I never gave second thought to the flooring in an airport before, but the carpet in Atlanta poses special challenges for those pushing their way to the gates. It never seemed so far before; now it was taking forever. And I was imagining how it would be actually having luggage, carry-ons, etc. I learned quickly that a lot more time would be needed to make a flight on time! A Delta representative was on hand to explain how they help people with disabilities and wheelchairs, and Darren was actually transferred into an “aisle chair” to board the plane then lifted into a seat so we could see how it was done. We knew this would be helpful for our flight home, and did serve to alleviate some anxiety about the trip that would take place soon enough. The Delta personnel were very helpful, and we figured we could do this when the time came (which we did, of course!).

Being in a room with three other patients had its up and downs, too. We shared laughs, stories and tears. We helped each other and shared information. One family had a prayer group every evening at 5 pm. Whoever was around and interested joined in. The father of one young man was a researcher and devoted time every day to read what he could about clinical trials, medications and the search for a cure. He shared all he learned with us every evening. Sometimes we ate together, played cards or watched TV together. It was a strange kind of family, but family we became. Who else understood what we were going through?

As with any hospital, there were some nurses and aides who did above and beyond the expected. Charlie, one of Darren’s usual nurses, was such a caring, compassionate man. In fact, we still keep in touch! While Darren was in the Day Program (I’ll explain that in the next section) he and his wife and family arranged a day outing to Stone Mountain. They planned everything, including a wonderful lunch, and spent the entire say with us. It was a very special outing. In this kind of setting, you get close to the physical and occupational therapists, and they became part of the support system, too. I remember getting something from the hallway fridge one night, and I was crying. Judith, Darren’s physical therapist, was there, too, and I tried not to let her see I was crying. But she did see, hugged me and took a few minutes to talk with me. These experiences, and there are many others too, are what made Shepherd so special. While we were far from home and didn’t have our family and friends close by, we knew we were in the best place for Darren.

Early on in Darren’s stay, some of the therapy was done in his room. He didn’t have much movement, and if he wasn’t dressed and out of bed by the time he was scheduled for therapy, they came to him. It started off with the most basic movements and exercises and progressed to more challenging work when he was in therapy several times a day. We even went to the exercise gym downstairs to see what he could do on his own in addition to therapy. When one friend came to visit, he brought several different size balls that Darren would hold and try to throw. Playing cards became a new form of occupational therapy, as did eating and trying to use a cell phone. Everything had new meaning now. The smallest, most basic tasks we all take for granted had to be planned, strategized and (sometimes) executed. I was pretty tough on him, making him do things himself, or at least trying. I do think that his continued determination to figure things out for himself to this day came from the therapists at Shepherd, and what they taught both of us.

Whenever Ari was with us at Shepherd, she accompanied Darren to therapy. She took quite an interest in everything that was going on with her brother, but really liked going to his therapy sessions with him. As a result of this experience, she chose to pursue physical therapy as her major in college and will graduate from Ithaca College with her Doctorate Degree in October 2012.

Looking back, I see now how much progress Darren made at Shepherd. But it was hard to see then. We were happy with the smallest improvements, but we always wanted more. It was frustrating and difficult. Keeping a positive attitude was tough when everything was such a challenge, but it was necessary to keep our sanity. There was just no room for negativity. When it did seem too overwhelming, I had to take a break and get away; take my mind off the realities of what we all were facing.

As Darren’s in-patient stay was coming to an end, Shepherd wanted him to transfer into their Day Program. While a battle ensued with the insurance company (one of many) we held our ground and got approved first for one week, then two and finally three weeks. Not only did we need the time for Darren’s therapy but our home modifications were not yet complete, and moving home too early would have been really difficult.

So we packed up Darren’s room and the stuff we had accumulated and moved into a little apartment two blocks away where Darren & I lived together. I was terrified of the thought of taking care of him myself, but I was assured I could do it by the staff. Read the next section where I will describe the Day Program in detail.