I am scared. My dad is not looking good. He is slowly slipping away (due to PSP). The fear of losing him and perhaps a piece of my mom is right about now terrifying. This whole process.. this entire journey has been so unfair yet perhaps many lessons remain to be learned. So many questions yet so little is left to answer. We often get sucked and stuck on the whys. Why me, why is this happening, why, why, WHY!
And no matter how bad it gets you always take a brief moment to think about the good times. The memories we made with our loved ones. For that moment becomes an amazing moment within itself. You savor it. You remember details that at some point seem long forgotten. You can picture the smiles, the conversations and even feel the essence of that particular moment. It quickly evaporates and you are brought back to life.
I miss my dad even though he is still here he is not. I now understand how blessed I was to have him in my life for so many others have walked away or passed away way before their time. I now understand his messages. His way of thinking. His way of just being. I understand his flaws and his strengths.
I am scared for this makes you think of your own mortality. It makes you question yourself, your morals, your dignity, your place in this world.... in the end you always hope you did the right thing for yourself, your family and perhaps humanity.
Thank you for reading my gibberish but I needed a small venting session.
Good night or good day to all!♡♡♡♡
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jessybx19
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well jesy bx 19 I think life is always a little bi unfair \ but what you have top do is pick yourself up dust yourself off and make a new start at it and please whatever you do ]]] do not stop giving your dad a hug or a kiss he will notice this he =might not say anythng but it would hurt him i know and inside he would feel it
just a kiss on the side of the face would still do the trick mate so hop to it give him a hug while im still on line theres a good girl jessebx 19 peter jones queensland Australia psp sufferer
Please know that I always do... every chance I get. I tell him I love him, i hug him and remind him that none of this is his fault. I know he sometimes feels bad cause we take care of him but i always assure him that we do it because we love him. My mom has done an extraordinary job taking care of him. He has been in been in bed for the last 2-3 years. He is able to barely stand now but we are trying our best to confort him. He recently enter hospice care at home, which perhaps is why I'm freaking out but as long as we can provide comfort I will have to accept this new phase. I always remind him that he is still my wonderful dad and that even though he is physically not able to do much he is still my hero even more so now than ever.
You too take care. Many hugs from my family to yours.
My dad passed away from PSP last month, he had it for 4 years and its been awful watching his demise. A bit different to your dads case cos my dad was still able to walk, very unstesdily and not far but he was Mobile. He however lost his speech and couldn't swallow solid food. He became very prone to chest infections and that's what took him in the end. Its been like mourning 2 people, the man my dad was before PSP and the man with the cruel disease. Its the hardest thing in the world, life is o under and my dad most definitely didn't deserve this disease and to suffer like he I'd. Love and hope to you all xxx
I know how you feel only too well. My Dad is 89 and had PSP for 14 years. He has been unable to speak or swallow, walk or anything else,for many years, now cannot see, and 4 times last year we were told he wouldn't survive, but he did. Like you I lost my Dad many years ago,but his body is still here, but looking at him, I cannot see him surviving much longer. We have been given a palliative end of life medical pack, to help ease symptoms, only to be given by the district team, but kept at home.
I just wish his suffering would end, he has had enough, my greatest fear, this will just keep going on, and on. He deserves peace now, this is his time.
Thank you for your small venting session. It certainly wasn't gibberish. I'm sure we can all learn something from your words.
I am sure you are frightened about losing your father and facing your own mortality, it's not a thought that sits well with any of us. Just carry on what you are doing, making the most of the precious time you left with your Dad. Yes, we are going to die, that is the only certainty of life, it's what we do before that counts! You will have the knowledge, that you did every possible for your father and that he will pass over, knowing that he is well loved, none of us can really ask for anymore than that.
I really hope that you are all at peace at this awful time, my thoughts are with you.
Hun, there's nothing wrong with being scared. The fear every step of the way with PSP is real, everyday. Try and stay strong for your dad, he will see the fear in your eyes and that will make him sad, seeing his little girl like that. Yes, give him lots of hugs and kisses! have a laugh over something you find funny with him, share a joke, all the funny things from the past it will cheer him up and you. It's so lovely when you will hear him laugh. Have a cry if you have to, nothing wrong with that. Enjoy each day don't worry about tomorrow as PSP is so unpredictable so just make the most of each day xxxx
Jessy, Glad you could vent on this site. We are here for you and your family. I learned long ago to not ask "Why?" I lost my dear Sharyn 5/4/14 to PSP after 24 years of marriage. My first wife of 31 years passed away at age 51 with another rare brain disease (CJD). My daughter said "This sucks! No one should have to go through this two times" I look at it a bit differently. Thank God I was there for two women at a time when they needed someone to care for them. The pain was the same both times and I'm hurting at the moment. Yes, it does make you question yourself, your actions, etc. That is a good thing. We need to self-assess from time to time. I've made some life changes as a result of my experience and perhaps that is the point of it all. Stay strong for your mom and family members. They will be watching to see how you handle things and react to this terrible experience. I know my grandkids are watching me so I'm conscious of my actions and words relating to this life experience. Post any time, we are here for you. Jimbo
I lost my husband to this unforgiving disease last Dec. and as time goes yes, you remember the time before this
took him. Don’t be terrified just comfort him and shower much love and remember this is (almost) not
the same person and that the great loss. I just know that deep inside he knows and loves you, unfortunately
this is life and we haven’t a choice. May God bless all and give strength. I can tell you need not question yourself. May you have comfort. Jan in Texas
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Im scared of the red marks on body :(
A "Does he take sugar?" moment!
Throwback moment ...
Wow. What a response to Grey January Day
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