Today I accompanied a PT and OT on a home visit to this 14yr old kid ('Luke') with DMD who'd recently had spinal fusion surgery. The purpose of the visit was to check out his transfers, fit a corset that he has to wear in the shower, make up an instruction sheet for the carer who was starting on monday, make some adjustments to his chair and just see how the family was coping generally.
It was pretty tough and interesting trying to manage this sullen/ sad kid and his narky grandma. His mum had to go to Shenton Park to pick up some pain meds, and had to wait there for ages so she wasn't even at home. As a result of that, his grandma had to stay home and be with him/us and not go to work, so she was pretty edgy. From what I could gather the entire family unit was at breaking point - Luke seems verging on depression, no one can sleep for more than a few hours at a time because Luke needs to be rolled or repositioned so many times during the night, Luke's dad works most of the time, and they have had zero home help/ carers for about 10-12 days. They didn't really want to see us, and it took a bit of explaining to get them to understand the purpose of the visit. There were a few firey words exchanged and it wasn't a very pleasant situation.
I think I did all right in the circumstances. I was the only one in the room trying to talk with Luke and not at him. His entire room was covered from floor to ceiling (including ceiling) with Ford stuff so I tried to get him to tell me a bit about his obsession with Ford ("I don't know" was his response most of the time). I didn't want my supervisor to think I wasn't paying attention to what she was doing but to be honest I think it was just as important to try cheer Luke up and try to diffuse a bit of the tension in the room. It was just a really stressed, exhausted, frustrated family.... The experience really opened my eyes to the influences of family dynamics, patient compliance and showing empathy.
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