I was admitted to the Spinal Injuries Unit of the PA Hospital after 4 weeks in ICU. The adjustment to the Spinal Unit after ICU was already very difficult and once my rehabilitation started it opened up quite a terrifying world for me. While I was in ICU my wife had to stay in a university dorm which was both uncomfortable and expensive but was the only place close enough to the hospital and still expensive, even though it was the cheapest available at just over $600 per week, Once I was transferred to the PA hospital my wife was able to stay with family close to the hospital. If it were not for that she would not have been able to be with me during my rehabilitation. Her encouragement and just being there during my physiotherapy and occupational therapy sessions did wonders for my motivation and emotional support. How other patients whose loved ones could only visit them occasionally coped with the emotional demands of a spinal injury is beyond me. I saw many other patients suffer depression caused by the separation of them from their families and loved ones that I was fortunate enough to avoid because my wife was close all the time.
When I was strong enough to go out for weekends, I had nowhere to go that was wheelchair accessible. My wife and I spent one night in a wheelchair accessible hotel room close to the hospital. It was, however, not comfortable and not as accessible as advertised. I had to return to the hospital early in order to be able to shower and toilet. When I was discharged and we moved into a wheelchair accessible unit we still experienced a lot of issues that we were not prepared for. It was not easy to adjust to an environment where suddenly I had only 2 hours care per day and my wife had to do a lot of tasks that we were used to having done by hospital staff during the seven months I was in hospital.
When you spend such a long time in a ward, adjusting to normal living is very difficult and much harder than we anticipated. It took an emotional and psychology toll for the first few month until we got used to life outside the ward and found ways to deal with difficulties not experienced on the ward.
A support centre that is envisaged by Spinal Home Help will go a long way to provide affordable accommodation for families and a safe place for a the person with the spinal cord injury to stay on weekends get used to life in the community again. It would also afford the opportunity to learn from people who have already travelled this road before which will make adjustment to life outside the hospital much easier. Many patients become so institutionalised after being on the ward for such long periods of time, that leaving the security of the hospital becomes frightening. A support centre where they can get used to not being in hospital for shorter periods of time will help that transition from hospital to home.