So in response to the Global Scream one woman replied that she believed in being positive, calm and cultivating acceptance rather than anger ,and will give her husband a hug rather than scream.....so I've been thinking about this and realized: after voicing many of my responses internally. This woman has no idea what my situation is, how sick my husband is, how draining, irritating, irrational, enraging and difficult he is, what our financial situation is; our supports; if we have family,how our own health is; or even how much of a relationship did we have with the person we are caring for. We all must remember to remember not to generalize. All of our situations are unique, different, trying or not in our own way. There is no right way to behave! I have acceptance but my acceptance is of my own reactions to an insane situation.
Nobody is trying to be angry; nobody is trying not to try harder. I believe we are all Saints to even be attempting to do what professionals are trained and paid for and to do it year after year after year while we are aging and spending down our savings in a climate of runaway inflation. This is a rant rather than a question, but it is Saturday post scream and I needed that.
Jill
Costa Rica
Written by
zjillian
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I haven't seen the comment but I think screaming is a positive way of expressing emotion (not necessarily in anger more in frustration and sadness) and to do it with others shows a sense of support and solidarity which is also a very positive thing. Well done all those who took the positive step of having a good scream. coyle51
Thank you and I agree! This feels so impossible at times and extremely difficult to convey to someone not in it. Like a war...you've had to have been there to understand.
Scream and love and cry and hug.
Jill
Right on Jill and well said. It would possibly be nice to be someone who is so zen they don't get angry and frustrated, but I am also never going to be that person. There's a time for hugs and a time for screams in our life and it works for us. And now it's time to get C out of bed and start slow morning routine.
Sunday is here and my husband just crashed and fell outside my window as I sit here on the computer. sort of sets the tone for today.
Jill
Sorry I think you you may be writing to my reply about acceptance! I certainly was not trying to generalise! You also don't know my situation, I understand and feel all the above, we all cope with what happenens in our lives how we as an individual. When I said accept all I was trying to say was we have NO choice at what life is throwing at each one of us, I have illnesses too one of them being RSD if you like to read about that you may realise why I said accept, I don't often write this I try to be positive I have been down the other road,. Sorry you caught me on a bad mining I could have chopped of my hand and foot with a knife last night pain had gone through roof and y morphine was not helping! Also have hubby that has to suffer I don't have answers I was trying to say we all have No chioce, only to accept and try to make best of life, or go under, dont worry I shout at times but insde but I won't go into that
If I upset any body I am sorry I was only saying a hug is better than realising you only have what you have no more I write this with tears as I do only think I may be able to understand more than you 1st thought! I read this back it has written grammar mistakes, I do hope your given some strength and support your right its a tough life but I am fortunate to see the wonder in nature we all need something.
Forgive me if I overreacted. I think it is the problem of Emailed responses. They always distort on the side of hardness rather than the tenderness that was implied. I guess I feel so sensitive these days to any suggestion that I am being mean and bad. The whole thing is so raw. Of course I understand and of course I too believe in love and kindness. And your situation sounds truly impossible. You of course have my love and a giant hug.
We are all in this together thanks for replaying the last thing any of us need is to hurt when all we are doing is expressing fellings , its hard, I send you good thoughts I actually cried to think you replied to me, perhaps letting go has done me good. Thank you. You are not weak to cope with what you do, it takes real guts!
Hi Jill, I thought that was what our scream was about. Accepting all the feelings you express, as OK! There is nothing wrong with how you feel, nothing wrong with you expressing the tiredness, the frustrations, the anger. These are all NORMAL human feelings and just because we are "carers/caregivers and we are all angels!" Doesn't mean we don't feel them!!!,! I'm sure we are put up on these "b......." Pedestals, to stop society feeling guilt and to make sure we stay at our posts doing what we all do, without complaint!
You are wrong, when you say there is no right way. Actually, there is a right way.THE WAY YOU DO IT,!!!!!M!!!!!!!!! THE WAY I DO IT, THE WAY EVERYONE ELSE ON THIS IS DOING IT! We can only look after our loved ones OUR WAY. So that is THE RIGHT WAY!!!!!!!!
I am not an angel, I certainly am not a saint, I'm just little olde me, trying her hardest, dealing with the "s........" Disease that has ever been diagnosed!!!! And I am fed up with do-gooders saying anything else. Life is hard enough, with out being patronised as well!!! So tell that woman who thinks we should hug instead of screaming ........., no perhaps not! (Sorry, hope she isn't a friend!)
Hope you enjoy a relaxed Sunday, now that's off both our chests,!!!
Thank you soooooooooo much Heady! Woke up this morning after long nightmare in which I was trying to divorce my Bob and couldn't do it and was trying so hard to be able to. THere are mornings when I feel I just am falling apart, my health, my brain, my desire to keep on with this interminable disease. Great to hear you. I get so down on myself for being weak..like, I'm weaker than the normal good person etc etc. But this is too much at.......oops Crash! Bob just feel outside..but he's ok and I'm back at my post. Thanks again, and Love,
I believe in being positive etc etc but sometimes I can't. So that's when I say, "I can't do this anymore", or "Stop the world I want to get off". As Pattz said, there is a time for hugs and a time for screams, and a time to rant, so rant away Jill.
Thank you NannaB! I needed that. It was a difficult yesterday..back i'm back at my post like a good soldier and will march through this Sunday knowing I'm not alone.
Jill every morning I get up and think this is the day I will manage to be cool calm and collected - by mid morning I am smiling through gritted teeth - by lunchtime it is just gritted teeth and by teatime I just want the day to end. When I finally turn in I think well that's another day I've failed perhaps tomorrow..........
Thank you. It is so difficult to maintain a calm or even caring attitude towards 4:00 pm. That is when Bob get most agitated and I get tired. And then suddenly I snap and get angry or louder or quicker to yell and I do feel bad because I know it is not his fault and that he truly is suffering. And then I apologize and the whole cycle begins again.
I must admit I try and preach about not having the anger but I do know its an impossible thing. Oh how I shout and scream and stamp my feet about each new symptom and deterioration. If he going through a stage of not wanting to eat thats a battle to be fought. If he don't want to exercise that's a battle for me to fight.
When he said to me on thursday why do you get so angry with me I had to tell him it's not you I'm angry with it's this bloody PSP. So I think I need to pick my battles before I start to fight because it's a war that can't be won.
But the thing is what will I do with all that anger that is bubbling up inside me. The way our emotions swing from up to down we would all be classed as bi-polar if we hadn't been labled as carer's (personal assistant) first.
Just of to my garage to have a foot stamp. Love to all. Janex
Right on! I don't know how we do this really. And boy to I hate people telling me "I don't know how you do this. You're so STRONG!" Like what are the alternatives. And yes I too believe it is about them not wanting to be guilty that they say we are strong...and also "Take care of yourself" Like how?
I think the true definition of "I don't know how you do this, you're so strong". Is "thank god its you and not me!" The only difference is I DO thank god its not them, I wouldn't wish this on my worst enemy. They are being selfish and uncaring!!!
Glad Bob's OK, I was just called away, thinking I would find S in a heap, but no, we have four large birds patrolling our garden! Another heart attact avoided!
After reading all the above comments the only thing I can say is each day my life is full of love laughter,frustration,ranting,screaming and a few others but for all of us surely that is normal. Denise x
Where did we get this impossible model of perfection we are always trying to live up to? It really is about as real as the tooth fairy, Easter Bunny, Santa Clause....
Surely we're all right to be ourselves. Some express feelings in different ways. I feel anger as well as love in relationships.We have always been a bit volatile together. But a lot of the anger now is to P.S.P. and after an upset we often have a cry and forgive each other for losing the plot !
So I agree. Where can we express our frustration, rage and fatigue ? Thanks for this site !
Love to you all this Sunday. We will all make it through and it helps so very much to know we are not alone and do very good jobs in very impossible situations.
YES HEADY ITS MONDAY AND THE CARER WILL EB HERE FOR ME AT 9,30 (THANK GOODNESS)
I HAV E JUST HAD AN ACCIDENT TRYING TO GET OT THE BATHROOM IN TIME AND FAILED AND MY KNICKERS/PAD ARE NOW IN A STATE - BUT I HAVE MANAGED TO CLEAN MYSELF UP B4 MHY SHOWER AND SHALL HAVE SOME BREAKFAST
No Jill, today is Tuesday, a brilliant day! My daughter has just this minute landed at Cape Town airport and will be here in an hour or so!!! Very, very excited!
Hi Jill, yes we have been enjoying the sunshine, enjoying some of South Africans finest white wine. Looking forward to Friday, when my sister joins us as well! Life can be good, even with PSP as a bed fellow!
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There is hope for us all!
Where are we in this process?
Trying to find a care facility, not as easy as we were lead to believe.
