Coming home was an experience… Someone at Shepherd who used to be a patient but was now a volunteer patient supporter made the comment to my brother "going home you will feel like a tsunami hit". He could not have been more accurate. We thought we knew how to handle everything and indeed we had good teachers and good instructions, but that is not all one needs. There is no teacher like experience. After the hurdle of our first evening home came the hurdle of adjustments for day to day living.
At first our tasks seemed simple enough and we need only change one aspect of our day. Without the gory details I will only say this, we all have to go and my time was night at Shepherd… We wanted it to be morning, not a easy switch. After three weeks we finally managed to do what we wanted. I needed to gain weight so we indulged quite a bit and neighbors helped, friends held, local bakeries helped, ha ha. But one thing we were not prepared for was on only our third night I wound up in the ER! This would be part of the tsunami that was discussed. It was a bladder/catheter issue that we just couldn’t fix at home and of course it was 3 AM. I have to say the EMTs were nice and who exactly how to treat me and my condition, as were the hospital staff.
Another element of being home was managing all of the things they came so easy in a well-run facility. We had everything we needed, hospital bed, Hoyer lift, the device needed to lift me from one area to another. But using a Hoyer lift at home was entirely different than it had been with the proper staff surrounding us and coaching us. And even doing it on our own at Shepherd seems simple because we were “safe”. It took us some getting used to but fortunately we ever had what we learned to be called “a floor transfer”… I’ll leave that to the imagination but I’m sure the meaning is obvious.
I also needed to find therapy again and this was a challenge. We had home support through our local “visiting nurses Association” which also provided an element of therapy. But this was not therapy that was anywhere near on a par with therapy for spinal cord injury recovery. These were people used to working with knee replacements, hip replacement’s at stroke patients. I live in a community that is populated mostly by elderly residents or summer half-year residence who are also mostly elderly and here for surgeries. Don’t get me wrong there’s a population of younger people like myself and families. But these therapists I received in the home barely what to do with me. It was a while before I found a place to go as an outpatient. Finally there was some sort of light at the end of the therapy tunnel.