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Does PSP make everyone aggressive, demanding and downright impossible to please sometimes? Sorry, but I cannot do right for doing wrong for my husband at times and it is really getting me down and I don't know how much more I can cope with the medical profession has left me to sink or swim as the consultant says "there is no help medical profession can give you"

dorothy-Thompson

11 Replies

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  • Hi Dorothy

    So sorry that you are having such a bad time. I know "exactly" how you are feeling. I care for my husband who has PSP and there are times when I feel like walking out of the house and leaving him to get on with it.......but we don't because we care. You obviously need some help. Do you have any family or friends who would be prepared to spend time with your husband so that you can have a few hours to yourself? Are you able to get him a few hours per week into a Day Centre perhaps?

    All of us who use this site have felt like you at some time, and sadly it is difficult to know what the answer is. It sounds like you might benefit from seeing your doctor to have a chat. I have had to start using anti-depressants, which really do help. I fought against taking medication but ask yourself, why not? They help a lot.

    I don't know where you are located, but you can also ring the PSP Nurse for your area. Believe me, they really have lots of good advice on how to cope and are always prepared to listen, Even if you only want to get it all off your chest, I think it's worth a phone call.

    I'm sure I won't be the only person to respond to you and I do hope that you will soon feel better.

    Take care.................sorry I can't tell you things will get better, but please take the first step and tell your doctor how you are feeling. If you don't want to do that, at least ring the PSP Specialist Nurse. They are so willing to help in any way they can. If you aren't sure who the nurse is for your area, ring the PSP Association main humber and they will advise you.

    Good luck and please keep writing on here. It helps knowing that you are not alone.

    God Bless.............SuzieQ xxx

  • Thank you SuzieQ for taking the time to respond. I sound off many times on the forum and always get kind words of support back. I don't really want to take anti-depressants although I do read a lot that they can help, I don't think I would like where they might take me, but - never say never. I do have a family but they have their own families to attend to and I seemed to have taken all the worries of my own life on my own shoulders because thats what we women do, we don't like to burden others with our complaints too much.

    I feel better now after chatting 'on-line', thank you again.

    regards

    dorothy-thompson

  • hi dorotthy

    anti depressants can be a real help -i have been taking them for 30 years (+)

    i now have psp and am still takign a low dose 1

    jill

  • I honestly think that like most people with long term neurological conditions like PSP siuffers try to regain a sense of control over their lives... and why not as the disease strips them of independence. It's hardly supprising that some PSP sufferes do this in a way with their nearest and dearest. My mum has become quite ritualistic and commanding as her physical ability has deteriorated. I just think although it's incredibly hard to handle, and difficult to tolerate as carer...is it apart of them feeling angry and disappointed...I hope you have help in terms of GP, social worker or district nurses and more especially friends on this forum. My dad is the main carer for my mum along with social services help. Even so we struggle dispute being a supportive and close family, and I'm a nurse. The impact of the disease is overwhelming and immense.

  • hi Dorothy,

    This is definitely a very difficult condition to deal with not just for the patient but also the care givers. I was the carer for my father and used to often get frustrated with his anger, unreasonableness and stubbornness. But then i never showed it to him. Only because i know whatever i was feeling, he was feeling much more. I had only the emotional stress. He had both physical and emotional. And who else will he take it out on?

    One of the key things to remember is that stubbornness is a part of the condition. Just as they dont have control over some physical movements, they dont even realise that they are being unreasonable. so dont think he is doing this to annoy you. he just doesnt have the control. And which means you only need to be patient. One of the things we did is to get a 24 hour helper who would help him with all the physical work at home. Walking, eating, bathing etc.

    Personally i felt that help me conserve energies, and also gave him a sense of freedom of not being dependent on me all the time. MAybe you should try that.

    Just hang in there. give him as much love as you can. It can only make you feel good.

    ashav

  • Oh yes :) The times I had with dad which we laughed at then and I do now where he would be really angry and frustrated and it didn't matter what I said it wouldn't be good enough. If I argued back (because I was angry by that time) he'd get really shirty and if I just went along with it he'd get more angry !! If I tried to find out what was wrong, he'd say 'forget it' or 'never mind'.

    There were many times when I did have to leave the room, because this wasn't the dad I knew. Yes, we had always been an arguementative family in the nicest way, that is to say we all always had an opinion, but now there was no reasoning with him. It made me feel like I was deadling with someone I didn't know and I wasn't sure how to deal with it.

    I would always go back into the room or have a few minutes where I didn't say anything as I understood it was all part of the condition and that dad was just frustrated with something but he couldn't tell me what. I'd usually start another conversation or reminisce, sometimes it worked, sometimes it didn't.

    The funny thing was he only did it with me, never did it with anyone else, so as Donna has said I think he probably did it as I was closest and maybe he felt safe being able to vent that anger and frustration with me.

    I really do understand how hard this must be for you

    Take care

    Lesley

  • Hi Dorothy

    Sorry it has taken me so long to answer but I seem to receive the e mails long after everyone else for some reason. My husband was never aggressive but he changed from a happy go lucky always smiling at the world person to someone I'd never known before. I did my best to take him out and about to distract him. Sometimes it worked and other times it didn't. The psychological impact of this illness is much worse than the physical one for the Carer. It took three Neurologists before my husband was diagnosed with PSP and the last one, a kindly man said, "This is not one person's disease, it's two people's disease". He meant of course the person who was caring for him. Like yourself I was alone all through it. I found I got little sympathy and no help whatsover. I think the fact that most people have never heard of this illness, they just dismiss it as something remote.

    I am consoled by the fact that deep down he knew how much I loved him and how much I did for him because just two days before he died he said, "Thank you for everything that you are doing for me". This, even now is a huge consolation for me.

    Love

    Lina xx

  • I am now experiencing these problems that Dorothy is having, looking after my sister. Thank you because this has helped me understand what is happening and is part of PSP. I have found that it is best if you can distance yourself i.e. go into another room for 10mins while this is going on. Also tiredness I have found is a factor with the PSP person. The more tired they are the worse, and the more you have to deal with. What really gets me is the lack of help out there for this difficult to manage condition. I dont want to take medication to help me cope. As you say this is a two person illness

  • Many families and friends find the cognitive changes the hardest thing to cope with with this illness. The changes in cognition and personality are part of the illness making it diffiicult for the person to reason things through and to plan or be patient, it helps knowing this is part of the brain changes and not deliberate. As a carer it is important that you have planned breaks talk to your GP or another member of you Health Care team about carers, respite, sitting service etc always accept offers from friends, give them practical things to do or ask them to sit whatever helps. Look after yourself too, eat well drink enough, exercise, rest in the day if you need to and can, make an appoint ment with your GP for you to get a check up. Take Care.

  • Thank you, thank you all for your replies, it does help, really.

    Carers in general are in the same boat, whatever the condition of the person you are caring for is, we get tired, frustrated, feel incompetant and mostly, on our own.

    It seems to me that the term 'Carer' is too loose, its social services and government speak for what most wives and families do and have always done - look after their loved ones. Its very difficult to change the habits of a lifetime and ask for help from the system.

    Although, to get any support at all, after the initial diagnosis, you have to be officially tagged a 'Carer', you don't get to be that until you have filled in numerous forms - understandably - then the decision to 'tag' you is taken by an anonymous person in your local social service department - again I accept that.

    But, just on one thing alone, after completing an application form for a Blue Badge for my husband, we were initially refused, I was told that 'your husband only walks slowly' - and 'we have to deal with a lot of fraud with these badges' - until I told them the facts of PSP. There are many hoops to jump through before you Officially get to be what you've always been - a carer.

    But on a more positive note, my husband can still get out, he does not have problems with eating, he can still laugh (just) and I think he still has his core intelligence, so for the moment , we are lucky.

    take care all

    dorothy-thompson

  • Honestly this is the hardest thing I have ever had to cope with. My husband has PSP and I have found that I no longer love him in the way I did. I get angry at his inability to talk, to move about - he is now tapping violently on the wall for the nth time and I am so tired all the time. However there are moments of laughter and I realize that he still retains some sense of humour which when it happens is like the sun coming out.

    My friends realised that something was happening to me and I eventually went to the GP and am now on anti depressants and can honestly say I feel heaps better and not so gloomy when I wake up in the morning. I realize that this has all been about me, but as the previous correspondent said, it is a 2 person condition. Peter has family and apart from his daughter their support is either not geographically practical or frighteningly poor. I am going to try and find a professional 'carer' just for a 24 hour period (not sure if we can afford anything longer) to give us both a break!!

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