Charles ended up in ER again, didn't help much but now we are in "stage two" and I'm falling apart. Much better today but just railed at PSP and him and the situation. I am so sad inside and know that yelling and crying doesn't help.
Everything is overwhelming. I have good help (going broke), he is comfortable (for now), and we still enjoy our limited time together.
I may have to make major changes ie: moving, retiring, etc. and that weighs on my mind as well.
It is an ALL-ENCOMPASING disease. And the guilt I feel makes it worse. Resentment now and then he'll be gone and then what. He said he forgave me but hard to forgive myself.
Thanks for listening to an all-familiar tale.
Cuttercat
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Cuttercat
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"All-familiar tale"!!! You have answered yourself there. Yes, we all have been where you are, on numerous times and will again and again and again!
Yelling and crying does help, it releases the pent up stress levels building up inside you. This is not good for you, hence the brain/body, needs to get rid of it through crying. It's just another necessary bodily function. My question to you is, why are you feeling guilty of having a natural body response? Embarrassed may be, if the place is inappropriate, same as if your bladder decided to empty at the wrong time, but guilty? NEVER!!!!!
All of us are victims of this evil disease, just like Charles isn't responsible for his actions, you aren't responsible for yours. At the beginning, S said to me, he knew if he was having a good day, because I shouted at him. All I can say, is now every day is a "good" day. PSP has taken its toll on me, just as much as it has S. I am very resentful of my life being taken away from me, my husband dying bit by bit in front of my eyes and I can't do anything about, bar scream. So guess what, I SCREAM AND SCREAM AND SCREAM. Of course I feel guilty, but why should I? why should you? We have both been bought to our knees, doing our very best for our husbands, if we did a bit less, we might not be so tired and therefore be able to cope a bit better, but that's not going to happen, is it? So how can we feel guilty?
Well said Heady, crying releases hormones or something which literally help us feel better! A baby cries and mum comes to the rescue, unfortunately we are the mum, but we sort can rescue ourselves, luckily we have each other too!
Thanks, Heady. I needed that. I keep apologizing to my sweet man for screaming and I know that is meaningless, since I'm going to do ti again, and so does he. It's awful. To know I am not the only one with these orgre-ish turns helps so much. Hugs. and thanks again! Love, Ec
You poor dear! Please take care of YOU! Are there friends/family who give you a break so you can regroup and gain the needed stamina to go on? I pray so, and will definitely keep you and C in my prayers.
I scream, cry and shout every day and always feel guilty, I can't help it, I would go insane if I didn't! I'm feeling guilty now, Keith asked me when is he going to the nursing home and when will he be coming home, I just burst into floods of tears, I don't think there can be much water left in my body I've cried so much!
It is and I've been looking at Keith all night thinking my heart won't let me put him into a care home, then came the crunch, bedtime! I struggled to get him into his glide about chair he was so stiff and leaning right over to one side, I was really scared, I managed though only to find he'd pooed his pants, did a superwoman clean up job and got him into bed, phew! He's since had me putting his bed up and down, up and down because he wanted another drink of his shandy, needless to say it's been washed down the sink now I've had enough!
Off to bed now for a well earned sleep if I manage to doze off at all!
I agree with heady, we all cry, scream and rant regularly, if I didn't I'd definitely going insane!! Try not to feel guilty, remember this Psp s**t is NOT your fault!! I can't imagine or believe that there are any carers out there that don't feel as you do....?! Try not to think ahead to much, just go with today, that's more than enough to deal with, don't ya think?? Hugs ❤️
Hi Cuttercat, I agree with everything Heady has said.
Everything is overwhelming when it's all fairly new. You can't cure this horrible condition, it's going to get worse so what can you do to improve things? I worked until 6 months after diagnosis and trying to concentrate on work, worrying about what was going on at home and then having to cope when I was home, almost broke me. Retiring was the best thing I did. OK we lost a wage but I got a bit of my sanity back. I then thought move or adapt and looked into the best solutions for getting a downstairs wet room. In our situation it was better to adapt. Once these sort of decisions were made, by me as my husband's solutions were not at all sensible, and the adaptations made, I could then decide what to do to make our lives better. Again for us it was to make sure I had time off each week to do what I want, arrange suitable holidays while we still could, keep inviting friends round and meeting them outside when I could so I never feel isolated.
I don't look at stages any more. If I did, my hubby shouldn't be here now. Some leave us still being able to walk and speak and eat. My darling can't do any of those things but squeezed the hands of lots of folk who greeted him at the Macmillan nurse coffee morning today. We are still making memories.
Scream when you need to, cry when you need to but laugh with friends and family as much as you can. It's good you can still enjoy time together and if you leave work you will have even more time to make happy memories.
Yes Nanna, I am awake nights trying to figure out next steps. But God will provide. So much to think about and this really helps. Your post is precisely what I'm looking at and will do if necessary.
So what if I go grey, wear casual clothes and stay home, at least I'll have some peace in my heart.
Can't really add more to what nannaB and Heady have said. Agree but don't want to repeat it.
I am aware that after I've had a daily [ at least !] melt-down, although I'm sure its needed, I also feel weak and ill. I don't feel physically better. But I can't stop it.
I get so fed up with having to be so grown-up all the time. Chris was always such a comfort and support for me. I really miss that.
Handy and NannaB totally summed this PSP lark and the implications it has on leading as normal a life. I feel that our world has shrunk to a very small world and doing anything always has so many considerations to think about that it would be easy to give up, it takes me all my willpower to get up and out of the door sometimes. Fortunately I had just retired when Ben was diagnosed but he was struggling along trying to hold down a responsible job and making out all was ok, I knew it wasn't but he took some convincing that he couldn't carry on. That was 2 years ago and it seems impossible now that he was the man who hold down that job and was well respected within his industry. What a turn around!
Don't feel guilty about letting off steam or crying, a natural response in such a pressurised situation, take care of yourself and try to get a little time for yourself if at all possible.
If my David could tell you, he would say that I constantly bitch and moan and whinge, and when he does something like not make it to the commode and I spend half an hour cleaning the front room (thank god for laminate flooring!) that I spend the whole 30 minutes in a rant. But we always apologise to each other, normally in bed later, and we start again the next day. This horrible PSP will not drive us apart, even if I end up giving up work for him.
We're all the same here, we wouldn't keep going if we didn't love our partners, parents or friends....
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