My husband Lourens was in the Spinal Unit of the PA Hospital for approximately 7 months. During this time I had to leave our home and move to Brisbane to be closer to the hospital in order to be an active part of my husbands recovery and rehabilitation. Many of the wives I met whose husbands were also in the Spinal Unit were not local to the Brisbane area. This meant that they had long distances to travel and were only able to be with their loved one for a couple of days at a time. When someone is hit with a spinal cord injury, the toll it takes it more than just that person. Loved ones have a great amount of stress to deal with and the added stress of not being able to afford to be near their loved one, I believe, contributes to the breakdown of relationships.
While I was fortunate that I had family close by that I was able to stay with, their home was not accessible for my husband. This meant that once the time had come where he had rehabilitated enough to be able to go out for weekends, we could not as we did not have anywhere accessible we could go.
One weekend, we booked into a hotel close by the hospital that was accessible. This was both expensive and a complete disaster. The experience was so horrible that we never tried it again. Although the accommodation was relatively accessible, we were not prepared for the coping with the things that needed to be done. With showering, and toileting being a giant hurdle as we suddenly found no nurses to assist, and no hospital bed to adjust. The morning could not come fast enough and the realisation that this was to be our normal life was terrifying.
By the time of my husband’s discharge, we thought our previous experience had given us some idea of the problems we may need to sort out. However, this was not the case. Within two weeks of discharge, we were exhausted, discouraged and found little help to guide us through.
I believe, had there been a place like that being proposed by Spinal Home Help, early life after discharge would have been much easier. We would have had the support of those in the same boat as we were, and more importantly, the knowledge and troubleshooting of those who had gone before us to fall back on. We would have been able to spend time in a home setting, and iron out difficulties while my husband was still on-ward and under the care of nursing staff. Weekend practice so to speak. This would have made an entire world of difference.