Hello everyone. Hope this message finds everyone well. I’m happy to have found this online community since I’ve been feeling quite lonely throughout this journey.
I am in my 20s and my dad was diagnosed with PSP in 2017. Initially the neurologist had given a vascular dementia diagnosis but last year when my dad saw the neurologist again, he informed us that dads symptoms were more in keeping with PSP. And so the dysphagia has been a particularly difficult aspect to witness and come to terms with, as well as dads speech becoming more and more slurred and difficult to understand over the months. He also has difficulty keeping his eyes open. Most of the time his eyes are closed. He has increased periods of sleepiness too and is withdrawn pretty much from his environment. His condition has deteriorated quite rapidly and it’s been difficult to try and process. Especially over the past year.
My dad was my best friend growing up. I’ve always been close to him, and I’m the only daughter and the youngest of the siblings. It’s a difficult journey since two years ago I got married and moved about 45 minutes from my parents home. Between balancing marriage, work, it’s difficult to be around as much as I want to but I spend every weekend at my parents (usually 2 nights). I just feel guilty that I’m not there enough or not as involved in his care. I am still cooking meals for him when I’m there, trying to be present with him etc but the drive home is always difficult. I can’t speak to him on the phone anymore either and this is heartbreaking.
The conversations are slowly fading and now all I have is dads odd few words which are slurred and can be very difficult to understand.
I have felt very alone throughout this journey - my husband has been a great emotional support but I’m not close to my elder brothers and have never broken down in front of them or my mum over dads condition. It’s only my husband who sees it. I have felt most friends have not ‘understood’ the scale of dads condition and the impact which I guess is human nature but i guess I’ve felt like most people don’t understand how difficult it is.
I’m not sure what the trajectory of this post was but it feels good to get this out. I have already benefited from posts on here so thank you all for sharing. Sending you all strength and love