Anyone?!!

I am so done. I just can't take being screamed at 24/7. Am I the only one dealing with a loved one with PSP who is angry and violent? I am tired of the nasty tone in his voice when he asks for anything. And twisting my wrists when I try to help him or trying to punch or choke me. Lately when he tries to hurt me I want to hurt him back. I know it is the disease but I honestly do not know how much more of this I can take. I have someone come in a couple of hours a day. He is happy as a clam. Also with therapists and doctors he is Mr. Charming. it is like he holds it together for everyone else and saves the worst for me. I try to be patient and kind and loving with him but it does not do any good. Yes he has had medication. Either it makes him more agitated and angry or it messes him up and he falls more and gets hurt. He mumble incoherently, and when I get closer or ask him to say it again he either "sings" it out or makes sounds like a wounded animal.

Both in an ear shattering tone. He has alienated his family and children. I am all he has and I really want to be here for him but it is as if he is doing everything in his power to push me away. He has textbook PSP symptoms otherwise but I really never hear anyone else (on this site), bring this up.Am I the only one?!

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  • I am sure you are not the only one, Goldcap, although you do seem to be having a very tough time. There have been postings on this site of even more violent behaviour by PSP sufferers - and of violent thoughts by their carers - so on the spectrum of violence my wife and I were fortunate. Unable to speak, write, eat, swallow liquids, walk other than assisted shuffle, or move her arms properly, Roisin had every reason to feel frustrated and agitated. Sometimes she would dig her nails into me painfully, at others she would try to twist one of my little fingers which suffers from osteoarthritis, or with her extremely strong finger grip she would attempt to crush my own fingers against a guide rail or some other hard object. Not often, maybe once or twice a week. Sometimes I would arrange for her to sit down and then sit quietly with her for a few minutes and say something like "Look, we both have to realise that each of us is occasionally angry about our situation. You have every cause to be and I am just human. One thing we cannot afford to do is to try to hurt each other." And so on. Once I had to warn Roisin that that if she became violent towards me I would have to 'seek expert advice' and it might be necessary to make other arrangements for her". This was said in the heat of the moment and in language I could not repeat. On two occasions when she was not allowing me to help her dress and we were going to be late for her physiotherapy appointment (did that matter? It did at the time, not now) I pushed her so that she fell backwards onto the bed; sometimes when she twisted my fingers or resolutely refused to relax her grip on me or on something else, I would try to ease her fingers loose which always worked if she wanted it to, and when that failed I would bend andtwist hers until she relaxed her grip.

    So, yes, you are certainly not alone but it reads as though you need expert advice and guidance. If you have not done so already, and since you imply that he can still speak, you could try talking to him about what he is feeling and what you are experiencing.

    I shall be thinking of you and wishing you well.

    Christopher

  • Hi Goldcap, no I don't suffer the violence, but I do occassionally get the nastiness. I know it's when he is so frustrated and can't get the words out to express his feelings, I'm told to " run away and play!" Or like I'm going through now, he fell this morning, is quite shaken up, so, I have just gone in the bedroom as he is taking a very long time to get up, thought he must be on the floor again, wasn't, just taking a long time getting dressed, tried to help, I got a bit flustered, (I'm still getting over the crash!)as he would not co-operate, so he laughed, asked him not to, just carried on, not a pleasant laugh as if he thought it was funny, a horrible bitter kind. Told him to sort himself out, and left him to it. That was half an hour ago, still haven't seen him, trying to get some sort of inspiration from you lot, to back in the bedroom and try again!!!

    As to your problem, I think you do need professional help. You can't care 24/7 for someone that is actually hurting you! What would happen to him, if one day, he did do some damage. You must try and talk to him. Take him out somewhere, cafe or something, so you have to be polite to each other and explain how you feel and the consequences if he carries on being violent.

    Goldcap, we have been talking together for a while now, I KNOW you have done all you can for your husband. I really think, now is the time, you start looking after yourself, especially if you want to carry on looking after your man!

    Sending you lots of love and hugs

    Heady

  • Hi goldcap. I am sorry you are having such an awful time with your husband. My mothers PSP has not shown the violence you describe so I can't share your experience but my brother was my mums carer 24/7 with only a few hours help a week from me when I wasn't working. it was simply too much for anyone and I can only imagibe how hard it is for you. it really sounds like you need more help or some respite care so you can have a break. Please try and look after yourself, you are important too. Good luck

  • hii.. my father too had such tendencies now he is not in a state to show any aggression.. he used to twist my mums hands, pull her hair or once he was on the verge of strangulating her.. I was also foolish enough once to put my hand in his mouth to take out the phlem and he would have nearly eaten my finger! but yes his aggression was more towards my mom than anyone else so I don't know what is it with them that the person they probably they love the most becomes their victim of aggression... hope its a phase and it passes away soon and you get enough strength to continue taking care. I can only imagine if people give up, its not their fault because its definitely not easy to take care single handedly.. wish you the best in the new yr!! <3

  • Hi Goldcap, sorry you are having to deal with this terrible side of PSP. I was considering myself so lucky that my husband had really good days over Christmas, however this week it is like the opposite side of the coin. He is so much more unsteady on his feet and has had 2/3 complete falls, the last one this morning when he was bringing me a cuppa in bed, so it went everywhere and I was lucky we had a thick duvet on or I would have been scolded. When things like this happen he gets annoyed with himself and that manifests into him being in a very tetchy mood for quite some hours and when I try to talk to him, he has a nasty edge to his voice and will cause an argument for the sake of it and always goes for the last word! Whilst he has not been physically nasty, I am his only carer and therefore the only person he has to vent his anger at this condition at - although I am fairly strongminded, I have in the past few days become very angry myself and am having to check my own temper as I know his condition is causing him to become someone I don't recognise. He is also getting up many times in the night as he is worried about the incontinence thing (one of his family mentioned it as a sympton - I hadn't told him, believe in a need to know basis as to give everything to him would only serve to depress him) so makes himself go to the bathroom 'in case' but of course it means I am constantly disturbed and getting very tired. Friends are trying to be supportive with their comments and keep telling me to look after myself or I won't be able to help him, that as a lot of us know is easier said than done. All my family are quite far away from us and we aren't the closest of families anyway, however, after a lot of silly talk from my mother, she found the video online from Dudley Moore (who had the condition) and now respects what will be coming and has had a complete turnaround in attitude.

    Offloading here is helpful as you find that you are not the only one coping with what is going on. If you can, find something that is just for you that you can do as and when you need respite. I tend to take our dog for a walk or go and have a bath (think I am the cleanest person in our county!!). I know when you walk back through the door it begins again but I find I have refreshed. I so very much hope you are able to get help or find a way to deal with this behaviour, my thoughts with you.

  • Hi Gilljan, my husband has had lots of falls in the past couple of weeks. I think it's because too much has being going on, all the preparation for Christmas, then the actually day itself. We had two full on days, it was my birthday Christmas Eve, so my sister did a big family party for me. Hopefully, now it's all over, we can get back to some sort of routine. Back to his Physio classes. Get rid of all the decorations, which I am sure are distracting him, although I hate packing them away! S has been asleep, most of the time since Boxing Day, I think some fresh air, wouldn't go a miss, but with this cold weather and frost everywhere, it's been difficult to get him to go out. Perhaps I will take him out this afternoon in the car for a while. Anything to get the brain cells back doing what they are meant to be doing. Don't think Christmas and the massive shut down we have in England, is suitable for a PSP sufferer!!!

    Lots of love

    Heady

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