hi everyone need some advice my sister and me are pulling are hair out this last 10 days,dad had psp about 3 years which in his case is

very progressive, the usual thing eyes,speech,falling can only walk a few steps with help.just wondering if any body going though what we are .HAS HE turned to attention seeking or is this normal behaviour he"s started to mix all he"s food together then rubbing it all over the table spitting it up the walls refusing to get out off bed, ive mentioned before about his aggression towards us we sometimes think he just wants to start an argument so he can hit out at us ,sometimes he wont swallow his tablets he spits them on the floor or hides them under his tongue.Then if someone calls he is back to normal eats properly no sign of this behaviour .He wont answer anything we ask him not even a thumbs up or a nod off the head is anyone else going through this thanks xx

Last edited by

15 Replies

  • Hi Mrsfarringdon

    You'll know from my blogs that we're in a similiar position but you've got it much harder by the sounds of it.

    My husband can be extremely aggressive, physically abusive and downright horrible to me at times and I find it very difficult to cope with it and control myself. Sometimes I don't.

    And he is the same, a pussycat with other people. I spoke with the neurologist about the aggression when my husband was first diagnosed, all he could say was that in his opinion those who were aggressive before PSP are quite often the same afterwards. This was and is my husband

    He has now been prescribed Queitpine which helps most or the time, but we have many "moments".

    Sorry to keep going on about them but I just wish that some of these "professionals" would wake up and smell the coffee so to speak, some people and situations cannot be "cared for in the

    Community"' they need specialist treatment.

    Dorothy thompson

  • Thanks dorothy

    That's only half of what we're going through sometimes we just think put him in a care home but when he's good he's the loverly dad we remember so we hang in there I've had a year of work to look after him but must go back November or il lose my job .We are going to have to ask for help now but scared incase he is Iike this for them and nobody will come in to look after him x

  • Hi There, Sorry to hear of your distress with your Dad. Im sure someone on this site with more knowledge than I, could tell you that some sufferers of this disease have dementia like symptoms as well as the usual others ( as if they aren't enough). Also the elderly can be affected with personality changes quite badly if they have an infection like a UTI. It does sound as though he picks when to misbehave so maybe he (and you) would benefit greatly from a period of respite to see if he acts up for others or only for you and your sister. Its a terribly hard job but websites like this have helped me care for my husband and I have been for 6 years. Get as much information as possible. All the best, Short1.

  • Respite care is a great idea! That way you can get to the bottom of the agression being just toward you or everyone/others.


  • Thanks short1

    We've thought about respite but we're scared incase they don't look after him as well as we do, I know they will but it's so hard to let him go may be because he's "OUR " dad and we only want the best for him .xx

  • Respite can only be for a few days or a week just to see his reaction. If he doesn't like respite you may see a difference when he returns. It's worth a try. Maybe you have an adult daycare near you that he could go to for the day once a week to see how that goes. They have activites for the patients and can be a nice break for him and yourself.


  • Come on everyone , lets have a group HUGGGGGGGGG xxxxxxxx

  • Cabbage, Is'nt that the truth!! I could certainly use on this week.


  • My Father in Law goes to respite for a week at a time. He finds fault with everything at the nursing home but it gives his wife a break and a well earned rest. He is now in a wheelchair full time but with the help of a grant from the local council we adapted the house and had a wetroom, a through floor lift (which is a god send) doors widened etc. it has helped with his care as he is totally dependant on my Mother in law. You should have help with your Dad you and your sister can not do it all. I think you will find he will co-operate with the carers and you will see more of the Dad you love, My thoughts and prayers are with you and your sister. GET HELP PLEASE!! x

  • thank you capsey31

    we are just so scared incase he falls, since i left work a year a go he has not had a fall i sit with him 24/7 i don't even have a toilet break without someone sitting with him .But like i said i must return to work soon .I need to find out what help is out there but once again it will come down to cost we dont have a big income cos i have'nt been paid for the last year apart from carers allowance once again thanks for your time xx

  • Your dad is so lucky to have you .

    I think your dad should be entitled to support , particularly if he has not got too much savings . Even if he did would still be entitled to more than you think so . It is knowing your way around the system . If you don't ask you don't get Get in touch with your social services dept and ask if you can have an Occupational therapy assessment .

  • We all understand how it must be for you , I am 76 and have one daughter she is both loving and caring and is a real support to is but we don't want to be a burden to her .

    Now that sounds a strong comment but from experience . My most beautiful mother had a stroke a very bad one at the age of ninety . and I would have done anything I could to keep her with me but she had to go into a nursing home . It did break my heart and my husbands who was particularly close and fond of her

    She lived for another three years and died five years ago but it still upsets me when I think about it .

    It was right that she went onto a nursing home even though it was not in anyway perfect . We visited daily to feed her and see to lots of her personal

    A body can only do so much . At the same time my husband had been struggling unknowingly with Parkinson's and the week she died I was torn between tending him and my mother .

    We don't want the same thing for our daughter . She is an only child and hasn't had any children so who will care for her maybe one ..!!

    So please take as much help as you can and ask for advice on here they will guide you as much as they can through their own experiences .

  • Thank you so much for your reply. I had a meeting with work about having to go back, no help what so ever, they want me back 5 days a week I explained what I do for dad but they just not interested .It's true your just a number on the pay roll. Il defenatly need to call in help now, must go lots phone calls to make a big thank you to you all xx

  • There is a lot of help out there and once your Dad hasn't got savings of over £23,50 you can get carers to come in. You need to contact the adult help desk at your local council and they will send a social worker to assess your Dads needs. They will call in the OT who will supply any equipment you need eg hospital bed. Also he you speak with your Dads GP he will sent the community nurse to help. You need to have lots of patience as there is so much paper work but it is worth it. My father in law had a review yesterday at my request and we now have 2 days a week at day care plus 4 weeks respite and carers twice a day. Also please contact crossroads you will support you. The help is there you just have to ask. Hope all of this will help you dad. Stay strong. x

  • Hi yes weve had similar experience with my mother as suggested contact adult social care if applicable. Show them this site it might help as its so rare a condtion.

You may also like...