I had to go into London today and my car broke down. Bad luck.
But it broke down within 100 meters of my old garage - Good luck.
I was of course blocking traffic and of course there are highly irritable truck drivers who love to have a shout.
So this on coming truck eventually got alongside me and stopped to shout inane abuses.
When he had used up his vocabulary (not long) he stopped to see what I would say.
I don't know why two thoughts came into my head... they're like buses y'know.
First thought dealing with an angry truck driver is nothing compared to caring for someone with PSP.
Second, he probably does not know what PSP is and as a loyal Association member I should spread the word.
I said quietly and calmly, "Your wasting your time mate. I'm a PSP carer."
He replied "Wot ****"
My reply was, "I am a PSP carer. I would just quietly drive on if I were you. But google PSP when you can"
He went very quiet and confused and drove away like a lamb.
Another nice thing.. I eventually got it going and limped to the garage and the mechanic who used to service was on the forecourt... Big smiles and assurances that he would fix, "his car", no problem - on Monday lol
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Kevin_1
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I cracked my voice screaming in the wilderness again today, so your testimony to the ordeal of being a carer was very timely, Kevin, thanks. I just read it to my sweetheart, and got a very welcome smile. I bumped his head in the stairwell trying to get him down for the village bicentennial parade this morning, and have been miserable about it. He bumped his head on his own last night going wandering after I thought he was safely in bed. We've had a very rough 24 hours! We finally got ourselves off to the little village center and watched the charming parade. It is a lovely day and the village has more spirit than one would expect. He grew up here and many people came up to greet him. The shock and pity of those who haven't seen him lately are hard to field, as is the awful repetition of assertions of my sainthood. Boy, do I know I'm not saintly! Still, it was good to be there, and worth the trauma of the trip.
Yes, psp is challenging me in all my weak spots, but I do love the man and would not wish to have missed this.
Thanks again, Kevin. You helped me AGAIN today! Love to you and Liz, ec
No matter how cross I get with L if I cause her hurt (bump head type thing) I crumple inside... her vulnerability... the responsibility. Wanting her to feel safe in her dependancy.
Him wandering at night... would scare me s**tless. We have a portable PIR sensor with a wireless responder... OK in English... A wireless battery operated movement sensor and another wireless bit that goes 'ping' when something moves across the field. We use it to make sure moggies don't get into the house to terrorise our delicate (like hell) moggie. Any good?... bit police-ee though, ugh.
That must have been a heart wrench for both of you, people who remembered him from before, their shock and the pity.
If I could draw I would draw a PSP carer as a Saint, with an open screaming mouth and in one hand the sword which fights for services (slays the failed service delivery people) and their other arm around their loved one. Sorry went poetic there! - Like it or not you are one... just a real one that's all.
It's weird... L hits all of my crumple , buzz buttons with high accuracy, when we are not getting on so well. I won't list all of my buttons the list is soo long the ISP will accuse me of overuse of bandwidth! Yet she says she doesn't intend to and is visibly shocked when I tell her what she has done... weird. Try this... I talk to her and she gives me Uhuh.... Uhuh...Uhuh... not looking at me and watching something on the computer... So I said... look this is not a conversation... So the next day she takes the headphones off and looks into the middle distance and says nothing at all.. So I said can you give me feedback that you are actually in the conversation? Now I get eye contact and uhuh as soon as I start to speak! And its repeated so often I cannot speak... on a bad day. It's pure comedy... But I struggle to see the funny side.
Then some angel like you, here tells me to treasure the fact we can speak to each other... now I do... well more often.
I rail at the gods some days!
I hope you got some good memories from today... PSP is totally "horrid" .
I'm glad if my efforts helped today... I can never repay what your words and others on this site have done to help us through.
Kevin, we ALL feel like this, screaming at our loved ones, yet knowing, they can't help it, knowing they are trying to respond, but our yelling is stopping them. I am always shouting at S for some stupid reason, half the time, if I give him a chance to try to say what happened, it's completely different to why I am cross. But does it stop me.........
I don't know what it is with PSP, but it seems to make us "Carers" complete neurotic wrecks. I suppose, watching your loved one die an inch every day doesn't help.
S is exactly like Liz, doesn't look at me, when I am talking, seems much more interested with the fly on the wall. Doesn't even acknowledge that he has heard me. Even if I am in a good place, with seconds I am a screaming wreck, can't help it! I'm afraid I don't know the answer, except patience! Which is something for me, that left along time ago!!!
"No matter how cross I get with L if I cause her hurt (bump head type thing) I crumple inside... her vulnerability... the responsibility. Wanting her to feel safe in her dependancy."
Kevin, that is precisely it: the vulnerability and the responsibility, wanting him to feel safe, but not being able to guarantee it. My guy is so patient and sweet and so much at my mercy, it's awful!! It is good to know that I'm not alone in feeling this way; otherwise this carer gig is awfully lonely. I'm so grateful for this community. Love, Ec
Don't knock counselling! I have just finished, Crossroads gave me a counsellor for some months. Have to say, at the beginning, didn't think it would help. Far to private a person, to let anybody in. But after a while and being use to sprouting off on here, I found it did help. Certainly I am far better accepting than I was, which just goes to show what a lousy place I was in then!!! Just having somebody listening to my tears and a place that I could cry freely, made a huge difference. Perhaps that's what my problem is now, it's finished and my pent up tears are overflowing again.
But you are right, without this site I would be dead and buried by now!
Sorry if that sounded like a put down on counselling.
I wouldn't knock it at all - I was a psychological therapist, counsellor, in the NHS for many years.
Glad you found it helpful... PSP is about continual adjusting isn't it?
And more...
Y'know I thought I had my head pretty sorted out... The training requires that one be in therapy as well. Well, I have a number of different trainings which means a lot of therapy under the bridge... PSP is reaching places in me which I thought long resolved.
Hi, didn't think for one minute that you were seriously putting counselling down!
My daughter has just finished her course and is now trying to build up her hours, before she can qualify, so I know, if you were a counsellor, you will have had every hair analysed!!!
Just dont want anyone getting the wrong idea about counselling. We all are facing a life we didn't want or agree to, all going into deep dark places that shouldn't be visited, that only a counsellor can help with. Personally I think, this is one thing all our GP's ought to be making sure, that Carers know about counselling and where to go in their area.
But, but, but....isn't that true of everyone who gets to live a decent age? And many who don't? At least with psp our loved ones are here with us. I'm sure we all know people who have lived through the sudden early death of a loved one to accident or violence or heart attack, or through the long grinding horrors of terminal cancer, the physical corrosion of diabetes, the mental erosion of Alzheimer's or the tragic loss of a child to schizophrenia...l can moan with the best, but, really, there are many ways to suffer in this world, and my lot is so very very far from the worst. I have food, shelter, medical care, security, freedom. And *I* don't have psp. So, not to preach, but from screaming I have gone to counting my blessings. I'm sure I will be screaming again, but for now....love and peace, and thanks for all of the people here, ec
Don't you just hate these "oh you are doing such a wonderful job!" People. Drives me insane! Do they even have the smallest idea of what we are going through and how insensitive their comments are! To me, a Carer is somebody who helps somebody to recover. I can't do that, I can't even try, well I do and fail. I fail at everything I do, like everyone else here. Every day we come across something we can't handle and end up screaming abuse at our loved ones, well I do! Yet people call us saints! If only they knew!
Still after a really crap week, pulled myself together and did a BBQ for S & I. It's surprising what you can do, yet still purée the food! I think he enjoyed it, who can tell??? It cheered me up, so that's got to be a big plus!!!
I envy you, your space to scream EC, if your voice will hack it, scream for me next time! In tiny England, there is nowhere without people!!!
Lovely. To make a lorry driver speechless is great !
This morning I said to Chris, " Just respond !! Do you want me to talk to you or not ". He said "I can't " but he didn't know why. Sometimes I ask if he heard [ he is deaf ] He says " no "
There seems some sort of block in the brain.
Love your picture of a PSP saint !! I actually jumped up and down with rage and frustration yesterday !
That's it in one Jean... It is so weird and was driving me nuts... now only occasionally.
One of the things which has gone for L iis being able to process social dynamics and feelings. So she needs peoples feelings explained to her and then she seems to get it. Lower level of empathy until it's explained to her... and she was a very big hearted social worker before.
Well as for jumping up and down with rage frustration you are in very good company!
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