What's next?

My husband was diagnosed with PSP last September but the neuro team at MSU believe he has had it for 5 to 8 years.

A few nights ago, he sat with his eyes closed and head drooping. I though he was asleep and suggested he go to bed. The look he gave and the sneer in his voice was frightening when he responded. Later he said he was angry because I was acting like his mother.

Since then I have been worried that he will become aggressive and try to hurt me. Is this likely?

9 Replies

  • I have had very similar unprovoked anger from Keith my husband, he would put his hands each side of his head and shake them with the most awful expression on his face and the look in his eyes was frightening! This was a short while before his diagnosis last year, he hasn't done it for a while now thank goodness so hopefully your husband will also stop. Keith does sort of push me away from him but I think it's just frustration because he wants to do things on his own and can't.

    Keep strong and try to think it's not really him but this awful illness that has taken over him!

    Sending you lots of love....Pat xx

  • Hello , I am certain it is frustration and anger at the illness and diagnosis , I have had very similar with my husband . He's always sorry after, it's the old adage.....take it out on nearest and dearest. It's so hard for us all , sufferers and carers alike, you won't feel alone when you use this site...we are all in it together. Best wishes

  • Hi, I really know where you are coming from on this subject. My husband can be just as nasty to me. Constantly having a go ar me for grabbing at him, pushing and pulling him all the time. What he doesn't realise, if I didn't grab him, he would flat on the floor and I only "push or pull" him, when he suddenly stops, if what ever reason, when I am trying to help him move to another position. He is very fed up that I won't let him go rock climbing, gardening, cleaning the pond out etc. etc. etc. At the moment, he can barely walk across the room, without falling over, so everything is my fault. He was perfectly healthy, until I took him to the doctors, compaining about all his symptoms, which obviously I made up!!! I could go on, but I'm sure you get the picture.

    What we have to realise, that with PSP, I am sure the sufferer doesn't realise half of the problems. Everybody complains, they have bad knees, back, whatever. It's just the brain getting the wrong message, therefore S was convinced he had bad knees, even had an op, but they were never that bad, it's just the brain was getting the wrong signals. Also, I think S thinks he has spoken to me, when he hasn't, again the brain sends the message, but it doesn't get through to the correct parts of his body. This must be so frustrating for them. All we can do, is try and understand, (yes, I saw that little pink pig as well!!!) and try and second guess what is really going on.

    I have, in the last couple of days, had a really serious conversation, about his attitude to me, under the threat, I will take him home early from South Africa. Actually has believed me for once and we have had a few easier days! So you can curb some of this bad behaviour. I'm afraid, I have the attitude, life is "£&@&£" for both of us, I need to be treated with respect, to be able to do the never ending and increasing intimate tasks I now have to perform! Obviously, I can't answer you about your husband hurting you, is he still capable? I would a firm conversation with him now, before you get anywhere near that point!

    Lots of love


  • I think the anger comes from frustration. I know when Brian gets frustrated he shakes his fists and swears (never swore before psp). He has never tried to hurt anyone but he is scary when he flips but it is short lived thank god.

    Don't forget they are dependent (or will) on other people for there every need. The fights we had about going to bed and getting up. He had me so I didn't know if I was on my feet or head. He would even decide he wanted to go to bed just as I was cooking dinner or he wanted to get up at silly o'clock and if I refused he would get frustrated and angry. But after a good talking to we set out some rules and it has worked well.

    you must set ground rules as to what behaviour is acceptable and what is not. Hope things settle down soon. Janexx

  • Hi BeckyandMel

    My husband has CBD and has often been very aggressive in his mood, it may sound funny when you read this but luckily he has only managed to squeeze my fingers.....my knuckles have been quite sore and it has had me in tears but now he stops as soon as I say tell him he is hurting my fingers.

    His mobility makes him unable to hurt me any other way, I can dodge him and he hasn't got much strength anyway.Of course I know he can't help it when he has been aggressive because he was never like that before the illness and hard as it may be at times, you have to remember that

    Den B x

  • Oh my, I am learning so much from you all, I had these nasty times at the beginning, after many tears things hav calmed down now. It really has been all about me understanding this horrible thing, I am so very much more patient now and feel so bad that I did not understand his illness. Consultant told me to google it !!!!!

  • Hi all when you read different things it brings it all back, when I am helping George he squeezes my arm it really hurts, he gets worked up if someone is here and he can't express himself. The other day he said that I told the doctor he had PSP which I never, it must be this illness, wish I had more patients feel at the end of my patients. Well good luck Yvonne xxxxxx sun is out again today at least we can get out in the garden, George won't come out says it is to cold xxxxx

  • Oh, dear, that sounds terribly disturbing. I am sorry you are facing this. I'm afraid you will find that there is no definitive answer about how this disease will progress for your husband, but for what it is worth, lack of emotional control is one of the common effects of psp. This is not to say that all the expected emotions at dealing with disease aren't valid - grief and anger and frustration are a natural response to this diagnosis. But the psp-related over-reaction can come and go, and how it manifests itself surely depends on the person affected. My guy went through a phase of over-reacting to poignant things; it was a bit embarrassing at the movies, and wrenched my heart when he would be upset, but it passed. I thought it would get worse, but it just stopped. At least for now.

    As far as the painful clutching some folks have mentioned - that can be an uncontrollable muscle action, and I have had some painful experiences, too. His hand just keeps tightening on mine, and he is unaware of how hard he is clasping. He has never acted deliberately to hurt me. HOWEVER, I believe it's impossible to safely generalize. Psp is different for every person it affects. There are the different types of the disease, and some people develop more dementia than others. Many people have told here of violent behavior, and you do need to be prepared to take care of yourself. I have been frankly in awe of the people who have persevered as caregivers despite the abuse they have endured, and have wondered whether in the end it was worth it to them.

    Hang in there, and keep in touch. We are all in this together. Love and peace, Easterncedar

  • Each patient has some different symptoms. Some do have apathy and others anger. No way to tell which your patient will have. I made a list of 34 symptoms of PSP that others have reported but that my wife never encountered, thank God! PSP is NOT a one-size-fits-all disease. The sooner you realize this the better off you and your patient will be. My wife and I didn't worry about "what's coming next?". You can't alter it so why worry about it in advance. Someone once said "Worry is the interest you pay on events that may or may not appear in your future". Very true. One day at a time worked for my dear wife and I. Jimbo

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