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 He has increased periods of sleepiness too and is withdrawn pretty much from his environment.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
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Seeker313
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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
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 ❤️
Dear Seeker,Your post is so touching and I am sure that you will find that the majority of us have similar stories to tell. It is a cruel and heart breaking disease. I work with cancer patients and if I had to make a choice between the two illnesses, cancer would get my vote because at least it can be managed, there is a predicted path and only in the absolute final stage can the patient not communicate. My mother can only say a few words now; mainly yes and no, but I just sit with her, tell her my news and thoughts, hold her hand and sometime we are just quiet together and being in each other’s company is enough whether she is asleep or awake. I am sure that your father will be the same; happy just to see you every weekend, he will know that you are helping your mother with his care too, and there is no better way of showing your love,
Hi lizzigator thank you for your reply. You are right it is such a difficult condition to endure as well as for family and caregivers to witness. Your journey at this point sounds very similar to mine, dad can only say a few words too mainly yes or no. Your moments with your mother sound precious. You are right in saying being present and being there is enough. I too try to make dad laugh and share stories. Sending you strength and peace also, I hope we speak again x
My dad too was diagnosed just over 2 years ago and my gosh has there already been a massive decline.
My parents have 5 kids, 4 which are marries and most of us are with my parents over tge weekends to support my mum who is his full time carer and spend quality time with dad also.
He barely speaks now which yes is heartbreaking. Throughout our lives dad has never risen his voice at us or anyone. He will always say yes, the most helpful and delicate person and loved by so many.. unfortunately that all seems to be forgotten now as he doesn't resemble that person but we will keep those memories.
Its horrible watching him deteriorate infront of us and nothing we can do to slow it down.
Just make him comfortable, play games, try make him smile and tell him stories..
Please reach out as the group on here are my first point of call in advice.
Hi banta123, thank you for your reply. Beautiful words shared about your dad and those parts of them that we are grieving. Sorry to hear about your dad also. Sending you all strength and my prayers x
Nobody is going to understand your situation unless they are intensely involved in the care of a neurological patient. In this chat your situation, your problems and your feelings will be understood.
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
I am not a phisicyan.
During the 8,5 years in which we was living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers
Wishing the best for you and your family and if the notes-document with our experiences and our informations are of your interest, do not hesitate to let me know to send it by the private mail of this chat.
Hi Luis. Thank you ever so much for your reply and your kind and reassuring words. Yes, you learn it is difficult for anyone to understand who hasn’t experienced something similar. That’s why communities like this are so valuable for all of us. Thank you for reaching out about the document you have compiled I would really appreciate receiving this, I’m sure it will be of great use and help. Thank you once again x
Sorry to have to welcome you here but glad you found us. Hope you find it as useful as I did with my Mum's journey, this truly is somewhere, where you can say anything and people understand. xxx
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