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.
Written by
DALLY123
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Dear DALLY123 , I am so sorry to hear of your loss. Your dad had a terrible journey and you can console yourself that he is now at peace and his suffering is over.Do take good care of yourself and your mum. 💟
Dear Dally. I am so sorry to hear of your Dad's passing but so glad that he was able to be at home with you and surrounded by love. Now it is time to take sometime for yourself knowing that he is no longer suffering. Thank you for taking the time to talk about the information on gastric outlet obstruction. I am sure that this will be useful information for people. Big hug. AliBee
Dear Dally, Thank you so much for taking the time to share vitally important details about what your Dad and your family experienced as you took care of him during his illness . I'm also grateful that your Dad has such a loving and caring family ! Sending much love and condolences to you and your family at such a sad time . 🕊💜❤️🩹
I'm so sorry for your loss. 💔🫂. "Surrounded by love" sounds like an amazing way to support him at the end of his journey. Our thoughts will be with you as you grieve and heal. 🌻💜
This is so terribly sad. I am so sorry for your loss and for the terrible journey your Dad and your family went through. You have my sincerest condolences.
My condolences to you and your family! Thank you for sharing your journey with us all. Wishing you and your family lots of strength in this tough time ❤️
I completely agree. There are not enough specialists who know and understand this condition. That is something we definitely learnt throughout the years
Dear Dally, So sad to hear your news, and I am sure we are all grateful that you took the time to explain the sad rout he had to take, my best wishes to and your family, and just remember the good times.It really is a terrible disease and my wife passed away in January with it.
The sad thing about this dsease is the time it takes for the meducal profession to acknowledge or recognise it until it is almost too late. I would hope that before long some further attention is taken and passed on, I have noticed that time after time the first indication and treatment is "Parkinsons" then "Parkinsonism" and the treatment remains the same, but I wonder if someone will find someway of helping with a specific treatment. I found in my case how few medical personell had actually heard of it, and nobody in this area specialised in it. I read somewhere that they were of the opinion that a fair proportion of the people who died with Parkinsons actually suffered with PSP, and therefore not as rare we thought. Malcolm
Thank you. I am so sorry to hear about your wife. I completely agree with you, me and my sister said exactly the same thing not long ago. That there is probably a much larger number of people who have suffered with this horrible disease but it has been diagnosed as something else. There just is not enough medical professionals who know about it
My heartfelt sympathy to you all and thanks for sharing your story here.
My beloved husband died three years ago today, and while we all miss him dearly, all of us--our son and his partner, our young grandsons, and I--are comforted knowing that he no longer struggles with this dreadful disease. I hope knowing that your dear Dad no longer is suffering will be a consolation for you too. Big hugs, Purrlie
So sorry to hear about your Dad. It's comforting to know that you were all able to be with him in that last week. PSP is such an awful disease and getting a diagnosis is so hard, more awareness is needed. Thank you for being brave to share your story. Take care x
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