Just to say thanks for all the wonderful support and encouragement - much needed and much appreciated . Where would I be without you all ? This week has been the week from hell . V's OCD has been in super-hyper overdrive all week . She has a riser recliner chair with special moulding in the back to try to keep her posture better , i.e. stop her spending hers days leaning sideways over the arm of the chair . Every day she asks me to put her in the position recommended by the OT , " sifted "(she means tilted ) back with her feet up . As soon as I put her in the position she changes it and then goes on altering the chair's position endlessly . And I mean endlessly - 14 &1/2 hours non stop Monday ( it was wet and we couldn't go out and the same every day except when we went shopping or out for a push somewhere .Up ,down , legs up legs down on and on and on . If I leave the room she shouts for me until I come back in . If I unplug the wretched chair she doesn't stop going on about it until I plug it back in . I can't distract her with anything and if I ignore the requests to put it in "sift" then the question is just repeated and I am wicked and unkind not to do as she asks .Each time she promises faithfully that she won't change it and of course each time she does . I know it is not her fault and she can't help it , but boy is it difficult to deal with .So tomorrow I doubt if I shall need to cry or look hang dog as I am now wild eyed and totally manic . Hey ho what jolly life we all lead.
love to you all Georgepa
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Georgepa
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George you really have ha a bad week, I am keeping everything crosses for you tommorow, you really need this CHC, to help you cope, and to get a bit of me time for yourself. George has also been a nightmare, lots of bad night, and to top it all he has got another urine infection, so Saturday night was so bad, hardly any sleep. George go luck for tomorrow, keep us posted. Yvonne x
Of dear George,Des is not quite that bad indoors but in the car he is terrible.He undoes the seat belt opens the sun roof even if it is raining turns on/off air con tries to grasp the gear stick and hand brake.I now always take 2 carers to restrain him so I too am cruel to allow that.
I too have put in for CHC no word yet and my social worker says I will know before him??
Well good luck to you,wonder if the panel know what PSP is let alone witnessed its many diverse problems.
Oh Georgepa, I remember it well. Not the shouting bit but the up, down up down. How that whine of the motor on the chair got on my nerves. The big problem was that he would put it into the full rise position until he tipped out onto the floor. The TV did distract him a bit so it was on all day. The radio didn't make a difference which I didn't understand as he couldn't really see the TV.
Hang on in there. It will pass as new challenges hit you.
I'm thinking of you as you await the appeal and am praying the panel are sensitive, have a lot of common sense and award CHC this time. You need some good news.
Thank goodness that you still have a sense of humour. You definitely need it! The repetition of things always drives mad so I hope that I am as good as you are at dealing with it as it gets worse. Good luck and positive thoughts.X
Reading people's posts on here really is helping me so much, I can't begin to tell you all what a difference it's made to me. I know because I was a nurse and have loads of caring experience that some of you thought I would be of use to you. It's only been a few days but I've got to tell you it's the other way around. Poor you, George I hope you get the CHC you definitely need it. I remember several of Mum's OCD's over the last few months. So frustrating. Mum is totally blind now but argues black is blue with me now that I haven't turned on the lights...I spend about an hour a day switching lights on and off and sitting in the pitch black at night because once I've turned them all off she thinks I've switched them on. I then have to try to turn them on silently so I won't bump into things. And NEVER drop anything or make a sudden loud noise she jumps through the roof and then wants me to show her what I've broken, even if I've not broken anything I have to pretend I have. These things are so much funnier when you have others to share them with!
Georgepa, I wish I had some good suggestions for you. I have yet to experience this ....well yes we do . Parking of the car in a specific area, turning the air on at church or at the house likewise with heat......And I suppose it's ocd, the way he uses his walker way outstretched to the point of falling, get up do it again.....All of these I have found some remedy to but they do need my constant attention lest he harangues to supposed resolve....
Good luck to your new challenge and good luck tomorrow
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Is fatigue a major issue for your PSP patient?
Massage therapy 
