I'm feeling guilty, but can't stop feeling frustrated with C, he has become obsessed with so many things and they change on a daily basis, he gets so angry over stupid little things, then I get snappy and annoyed. I know it's just the PSP but at the time I can't help feeling that way, then I feel guilty for being so snappy with him. When he is so slow moving and in my way I get impatient, what's the matter with me, why can't I be like I used to be and that is patient and kind, I feel such a bitch, I need to think before I speak and stop these stupid feelings it doesn't help anyone.
Thanks for listening
H xx
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Helen119
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Aha Helen! Feelings we've all experienced no doubt? Psp makes everything soooo frustrating and we get annoyed, who wouldn't?! It tries every bit of patience you have and some!! So, rest assured there's nothing and I mean nothing wrong with you!! Its Psp that's the fxxxxx!! X
Thanks Satt. Yes PSP is a fxxxxx, I am so surprised at how I am reacting, but struggling to stop. With all the posts I am reading, and I am moaning at him mostly under my breath, i feel I shid be grateful we are not at the later stages yet, I will just have to try harder.
Thank you for your kind words hopefully I will come through this stage and be more patient.
I know the feelings! I wish I could say something to make you feel better, because I'd use it myself. The snappishness and consequent guilt are horrid. It does help to know I'm not the only one, as of course is true. It comes up here ALL THE TIME!
I can only say, you are not alone. Hang on. Love, ec
Helen, remember you hate the disease and not C, who no longer be who he is. A friend of mine in West Africa remarked today that I seem to be deteriorating mentally that this is frustrating. I have not been able to share my diagnosis with her because I believe it can wait two or three weeks until she comes back to New Orleans. I just hope she understands and that I don't lose another person I care about to what the disease had made me.
Don't let what the disease has done to C destroy your memories of your life before. We don't know each other well but I am sure there are a lot of good times that can help sustain you through the bad. You have had the worst responsibility in the world thrust upon you, and I admire that you can still be objective enough to see what IT has done to change you. Hope for the best but know you will find the reserves of strength to see things through. Just because C cannot express his gratitude to you doesn't mean he doesn't have any. I will pray for you both, and for those tiny silver linings which make it more bearable.
I feel the same Helen it's so frustrating ,guilt is a terrible thing every day I wake up saying I will be more patient but fail at some point through the day x
So often that is me too. Except I get behaviours similar to passive aggression and Liz has never ever been like that. Some days I see a look in her eyes and I know it will be a day which will end up in me screaming up the walls and feeling desperately upset.
I have tried explaining the impact of her behaviour using whatever it is she has just done and she cannot see it. Being able to understand novel social process seems to be one of the things that goes with PSP.
The only thing which seems to work is getting out of the room as quickly as I can and that is not always do-able with the care role.
In February my sweet guy began having seizures most likely due to PSP. Thought they were under control with meds, but the end of March he seized while getting out of the car from a drs visit, fell hard to the ground and broke two ribs. We were at the dr because the week before he had Botox injections for blepharospasm that went all wrong. So along with his rapidly progressing PSP he's dealing with pain from the ribs and even more compromised vision. All of which has made me the enemy! I feel horrible for him, and I too explain until I can't explain anymore, and eventually I lose it. Why can't he be a grown up and care about his health and safety as much as I do?! Find myself throwing my hands in the air, screaming a few choice words, and storming out. And I'm starting not to feel so guilty about it!
Guilt is part of the process, unfortunately. Just remember that you are a special human being performing Herculean task daily. Take solace in your loyalty and love, and release yourself from feelings of guilt and frustration. You are a hero to me!
With warmest regards and hopes for better times, I remain,
I too get frustrated when he does something "stupid" like standing alone when he knows,or should know,that he will fall.I feel that I cannot turn my back or get out of earshot-he doesn't recognize his limitations.I don't want to impose limitations on him but reality is reality.Yesterday he said he would hoe some in the garden! Oh how I wish he could! I would be right there beside him cheering him on! But the reality is he would be lying in the dirt.What a life for us both!
I pray everyday for patience and strength (both physical and mental).
All of us heare you and do empathize with you because we know our love one's are not capable of that,another thing this disease takes from us. I'm so tired some time I just want to shake him tell him to give me a frigging break.but mostly I'm tired of of not really living anymore,if that makes sense.
Dee yes it all makes sense and I understand exactly what you mean, very frustrating, but we do it cos we care.
Xxxc
Hx
I get cross with my Dad, I think sometimes it's a defence mechanism as if I didn't get cross I would just get emotional and cry. It really upsets dad if I cry in front of him, so I just get bossy and matter of fact about stuff. I tell him I'm sorry if I get snappy and he says it's ok & that he understands. Everyone on here is so right that we shouldn't feel guilty. Love to you all.
Hi Helen 119 .Really sorry just looked at the posts especially yours as I had a few replys from yourself and somehow or other got you mixed up with Sammy I do know how!!!!
I'm rubbish but try but struggle to understand with all this techno and so so much information so really sorry and thank you for your replys .
With warm wishes Miriamxx
in reply to
Hi Helen.
Again really supa dupa understand your feelings of guilt NO NEED!!!!
Your doing amazing even if you don't feel it .
Your strength is admirable and don't feel guilty.
This condition is so trying and a test to us all of everything and complete utter sadness .
Keep going and I mean that in the nicest possible way it's so hard though isn't it?
Some days OK and alright and other days oh no can't take any more and just well numb and no words really xxxxxxxxxx
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