Our hearts are broken as our dad passed away on April 15th. We wanted to summarise his journey and symptoms to hopefully help others and to also raise awareness of gastric outlet obstruction.
Our dad had a neurological degenerative disease called Progressive Supranuclear Palsy (PSP).
We had not heard of this until our dad was finally diagnosed with it in late 2023.
His journey with this horrible illness was not an easy one. His first symptoms were slight behavioural changes. Changes that his wife and daughter who lived with him noticed but they didn't know why. As time passed these behavioural changes became more obvious and the dad and husband who we knew was struggling to stay.
In 2018 his mum passed away and this seemed to trigger a snowball in the progression of these symptoms. Serious delusions and paranoia took over and our dad was sectioned under the mental health act in 2019. In hospital we were told possible dementia or Parkinson's. The psychosis was treated with medication and after a few months dad was out of hospital. He became increasingly frail over the next two years. He had multiple near misses and some small crashes in the car and eventually had a crash that wrote the car off. Thankfully dad and no one else was hurt. He became incontinent over a matter of weeks and more and more unsteady. After being admitted back to hospital due to the doctor diagnosing catatonia, dad moved into a care home. As difficult as this was it was the best decision for dad and for our mum, who found it increasingly more difficult to give dad the care he needed in their home. In the care home dad started having falls regularly and one bad fall resulted in a broken hip. This meant dad was bed bound for weeks and he really struggled to walk again. He did have weekly physio but sadly this was the only time he would be out of his chair walking. We watched dad lose weight over the months. The nurses told us he was still eating well and they started him on calorie drinks to help with his weight. After visiting dad on Sunday 7th April 2024 and leaving thinking he was tired from physio but otherwise ok in himself we had a phone call early Monday morning to say that dad had vomited and aspirated. We were told by the paramedic that if he went into hospital he did not believe dad would come out. Because of how sudden this was and we did not know what was happening we made the decision to send dad to the hospital, and we are so glad we did.
While there he was diagnosed with gastric outlet obstruction. This meant that his stomach was not emptying and it was just filling up. He had fluid on his lungs where he had been aspirating due to liquid coming back up out of his stomach and he had to have his stomach drained. A neurologist broke the unbearable news to us that the PSP had progressed to a point where sadly there was nothing they could do. Dad's muscles had stopped working. We were constantly looking for signs of dad's swallowing being affected but we did not consider the muscles inside. Dad was sent home on risk feeding and end of life care. He passed away 1 week later. We were with him everyday that week and he passed surrounded by love.
Journeys end
CHC Fast track - not so fast...
Love you lotses dad xxx
Lost my Dad 
PEG tube - our experience
