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 He has increased periods of sleepiness too and is withdrawn pretty much from his environment.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
X
Hi and welcome!
My husband had PSP and passed away nearly 5 years ago. It's a very hard journey to go through, and it can be so lonely as so few people will ever really understand how difficult it is to lose someone in little pieces and have to grieve while they're still here. That's why this group is so special, because everyone just 'gets it'. I'm glad you came and had a little vent and got it out - you should do that as often as you need to! Sometimes just the sharing is a relief and a comfort and knowing that you are not alone here but amongst friends.
It's going to be a bit of a roller coaster still, so please be kind to yourself and don't think you should always be doing 'more'. That guilt is real - I know I felt it! But you do what you can and you do your best, as we all did/do. There is no standard to measure yourself against but your own, and what you can do that day, that minute, that moment. As long as it's coming from a place of love (and it's clear you love your Dad very much), then it can't be wrong.
Just treasure the time that you have with him, for as long as you can. And come hang out here whenever you need to
Sawa
Hi Sawa!Excellent, brilliant.
A big hug.
Luis
Hi Sawa lovely to meet you and thank you for your reply. I’m sorry to hear about your husband. My thoughts are with you. Your words offered so much comfort and strength I really appreciated this message. Thank you much love ❤️