How do to deal with this dilemma,Pre-PSP, my husband usually made all his own decisions, would very rarely consult me over anything,

Especially anything to do with money. Don't worry everything is fine on that point BUT. Whenever he gets something into his head, he must do it, right then and right there, or I must do it for him, however impractical.

He keeps up a continuous, persistent drip, drip of demands that I feel that I am going insane and just have to remove myself from him.

any suggestions?

Kind regards

Dorothy T, Happy daze!!!!!

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24 Replies

  • Hi Dorothy, Sounds like a really tricky situation and must be very wearing on you. I live and look after my mother in law and we can hit the same wall at times. She thankfully has power of attorney now, for her money and health, he is a close family friend and solicitor. It really helps with money situations in particular, she does have capacity and is still able to make choices for herself but can get confused at times and tends to listen to him more as he is once removed from the family. He is also a great support to me and the family. In the house with daily choices I do sometimes have to be quite firm with her and very blunt with why I think she should do something or not do something. If she is still adamant I just let her carry on but stay close by in case she puts herself in danger. Probably one of the biggest problems ive faced due to the dynamic of our relationship but I have found being firm and explaining why I am saying something has really helped. Sorry I cant be of more help, I think walking away is sometimes the only way of dealing with it, at the end of the day you can only do what you can do.



  • Yes, you are both right and I do know and understand that. The ironic thing is that I am, most of of the time, a fairly confident articulate person, especially on behalf of others. I have been able to secure a lot of help and outside support for my husband, general aids etc which have made our lives more bearable. PSP has made him behave intolerable sometimes and I have said before, mainly towards me because I am here almost 24/7. We had another "incident" today, so I did what Rockfly suggests, I removed myself from the situation. He has been prescribed an anntedepressant and we are just one week into them, I am told that it takes about 4 weeks to be fully effective,

    Peter, I admire you even more now for how you are and thank you both for your encouragement. I have just got to break the habits of a lifetime.


    Dorothy T

  • hi dorothy T thanks for your answer so promptly I hope thiings really work out for you and the antidepressants kick in soon I would; think you have had more than your share of sadness with this terrible psp like everybody but I think you would have gone through a lot more being a carer is bad enough but having the abuse thrown at you

    as well makes it doubly hard I hope with all my heart that things go well for you now

    so good luck my friend take care peterr jones queensland Australia psp sufferer

  • Hi Dorothy,

    My husband in the earlier days of his PSP almost broke us financially with his behaviour and determination to do things the way he wanted to do them. Fortunately I realised fairly early on what was happening but this was before we knew he had PSP and I tried intervening but he would get very upset and walk out. At that stage I felt he truly wanted a divorce because things between us were so grim. On more than one occasion I offered him one, but each time he pleaded with me not to leave. A horrible and confusing time.

    The improvement came when he started on antidepressants and sleeping tablets. It took about 6 weeks, but he calmed down and then refused to have anything to do with the mess he had created. Whilst we are back financially on a reasonably even keel it wasn't before he had used virtually all his savings which were to form part of his pension. Yet another destructive side of PSP.

    My husband now won't make any decisions about anything including what he wants to eat or wear.

    Keep up the good work and may you see some improvement over the coming weeks in your husband's behaviour.

    Best wishes


  • Peter3, exactly what has happened to me. Our finances are precarious and I fear I will run out of money to care for him properly. One of his siblings now has power of attorney which I find incredibly offensive. They are all telling me how wonderful I am but do not offer any actual help with managing his care or his violent behavior. My family is on the other side of the country and don't understand why I stay with him. Everyone on this site has said this is not a permanent situation. I have spent half of our 10 years together dealing with his pre/early PSP related personality disorders. How much longer-a few months maybe I can deal with it. A few years I will cave under the stress of being raged and lashed out at continually. I am already starting to have stress related health issues. I have had to cut out all household help and my to do lists get longer and longer. Rockfly you are a saint. Your boyfriend should should be down on one knee begging for you hand in marriage for taking on the care of his mom. (And while she is lucid enough to participate:). I am going take a bath, drink a glass of wine and pray he does not start yelling for/at me. Goodnight.

  • PSP robs you of the person you are closest to and then puts huge physical demands on top of everything else. Now there are times when I wish my husband would just answer back positively or negatively, instead he has become the very passive person most of the time.

    I'm feeling a bit frazzled with disturbed nights recently. My husband wakes up complaining his legs or arms are not in the right position, it can then take me sometime trying to ascertain what position he wants them in!

    My husband's family now have little contact with him apart from his very elderly mother who is not in a position to help. One of his brothers even refuses to believe that he is ill at all albeit he can't do anything for himself now. Thank goodness for our daughter and some very close friends who help to keep me sane and plodding onwards.

    Sleep well everyone.


  • hi peter3

    That is all very sad about your husband's family, what on earth do they think is wrong with him then?

    I also understand perfectly what you mean by trying to elicit information from your husband as to where the pain is, it can be very frustrating all round.

    Some of our oldest friends too have been disappointing in their lack of interest and support for my husband. The extended family though have been very supportive, and it does help to keep you sane, that's very true.

    Take care and, we are really "all in this together"

    Dorothy t

  • So true about being in this all together. All I can say is thank heavens for this site. Just knowing one is not alone and being able to share feelings, concerns and asking questions of people who know what one is on about.

    Thank you to all of you out there.


  • to Peter3 to dorothy t,

    all this is all too familiar - I am a daughter of a PSP sufferer, I live here and my family is in France ...

    I have seen all the changes you mentioned in my dad ( anti depressant do help) and seen my mum go through ups and downs. And everyday has a different challenge...

    on the family reaction - sometimes I think people dont realise the work it is to take care of someone full time - I help mum during school holidays when I can (so not a lot compared to the day to day she is dealing with) and I think until you have done that you dont know what it entitles.

    same as friends only realise when there is a tangible physical change in the person - my dad is in a wheelchair and doesn't speak much ... so this is obvious now.

    yet sometimes people are caught in their own problems and forget yours....

    Then there are the victories:

    my dad saying to my son "listen to your mum" in the clearest voice I have heard him speak in a long while, the connect 4 afternoons between dad and the kids, the singing altogether nursery rhymes.

    this is priceless and rays of sunshine I treasure :-)

    Take care everyone

  • Hi Dorothy, we had a really awful day also. I am sorry for you, I am sorry for me and I am so sick of being screamed and cursed at. He is older than me so it reminds me of my childhood with my father. I am actually taking a self defense course. In class tonight someone asked me how my arm got so bruised. How do you explain that your most significant other gets so angry that he grabs on and won't let go. I can't get anything done. There is always one more thing he needs or wants...NOW!!! I dread getting out of bed in the morning knowing I have to face I took care of my mom-it was nothing like this. She was so appreciative of all you did for her. Her worst was his best. You want to talk about irony? I usually annoy people with my perpetual positiveness. My favorite expression was always, "something good always come from something bad". But now it feels like something bad always comes out of something good. I thought the new meds were kicking in but they seemed to have leveled off. The only course of action I guess is to keep calm and carry on.

  • Oh, goldcap, I'm sorry you've got such a horrific situation. Sometimes it seems as if positivity attracts trouble - the demons looking around to smack the good down, is how I see it when I'm feeling superstitious. So why do you stay? Not to push you, but would his family step up at all if you weren't there? Wine and a bath sounds like a good plan - how about some earplugs, too?

  • easterncedar, I stay because I promised him I would and because deep down in there somewhere is the man I fell in love with. I gave up too soon on my marriage with my son's father, and I was not there to take care of my dad in the end...there things I have not told anybody.

  • You are not alone,I was sent to get a new sort of cough mixture he hadn't tried from the chemist when I got back my husband said go to the doctors and pick up my prescription but it was nearly 1pm when they close for an hour so I said I'd leave it til after lunch.Just after 2pm I asked him if he needed anything else while I was out, he said he needed more compliance!I told him I didn't know long words but I had a couple of short ones for him!We both laughed. Other times he worries about being a burden so I try not to complain at his demands,but it isn't always easy.Good luck and think it is the disease not him that is unreasonable.

  • Dear Dorothy, I think you said it yourself: sometimes you have to remove yourself from the situation, just walk away, not try to respond to every demand. Easier said than done, I bet, but can you say "not now, dear" and leave? Will the demands accumulate or is it your immediate attention he's after? I have a small inkling of what you're going through. My guy is a sweetheart, but even so there are times when I feel I'm being stretched to the limit. My tai chi class is a lifesaver - lots of deep breathing! It really helps with the stress. Did you ever get that weekend away? I wish you could find a way to get some regular respite, Dorothy. You've been struggling so hard for such a long time. I wish I could help! Easterncedar

  • Thank you all my fellow bloggers, thank you for the care, understanding and love. Talk about hands around world!

    I sometimes think that I am too negative and complain too much on this blog, but in all honesty, how can the outside non-PSP world understand what it is we are all going through, and why should they, would we if the positions were reversed?

    Had another tour-de-force last night, conveen and incontinence pants(for added security) off, bed soaked, all attempts to rectify met with aggression,hanging over the rails of the hospital bed and groaning and moaning all the time. By 4am I had had enough and went to try to get some sleep on the settee. Not very PC caring I know but enough is enough. My husband is now sleeping soundly, in a nice clean and warm bed after being showered and breakfasted and I am feeling just a little frazzled. Thank goodness for our lovely carer who has just arrived and now I can get a few hours "me" time.

    And, if all that was not enough, the toilet needs repairing and my plumber is not responding to my calls, grrrr.

    Kind regards

    Dorothy T

  • Oh, goodness, Dorothy! Complain away! I think you're amazingly stalwart, and truly respect how you keep on. I am glad you have some help right now, and wish you a lovely couple of hours of peace. Take care of yourself! Easterncedar

  • hi eastern cedar

    my tai chi class is great too1!

    and love it for relaxation and balance

    but i ought to practice i ta home a s welly and do not

    lol jill


  • I know how you feel on this one, had the same trouble with mum and she wanted to hoard £1,000 in her chest of drawers at all times. This was because she realised it was getting more difficult for her to get out to the bank and shops. She was not a person to be reckoned with in her pre PSP diagnosis years but it was clear her decision making was affected early on. Luckily she had made Sis and I joint LPA and we were able to take over her affairs once we knew what we were dealing with so that she no longer felt this urge. However the obsession then switched to saying that she was not wearing her own clothes. In fact she had a lot of lovely things she had not been able to wear for a long time as she was not able to stand long enough to rummage through her wardrobe. She finally accepted the situation but in a way it was sad as it was as if the fight was leaving her. Mum's answer to not getting her way was to try to do it herself as soon as someone left the room with catastrophic results. All I can say is that nothing lasts forever with PSP even though we don't know what time scale you may have. I am thinking of you, Dianne xx

  • Hi, I'm in a similar situation. My wife is very demanding of me and relies on me for everything. However, I don't regret that but I do get a bit miffed at times about a constant flow of requests. At least that's how I perceive it. I've just had to come to the realization it is part of PSP and go with the flow. Doesn't do any good to be upset about it because in the big picture it's a small thing (filling her requests). We must also remember that PSP is a dementia disease so you have to review any requests in that context and not get into some bad situation, financially or otherwise. I got power of attorney over everything in advance of progression of the disease. That would be important for you to do also. If you already have a power of attorney you need to get it filed with any investment (IRA) accounts so that when you need the funds you are able to access them. Some investment companies have their own forms so it isn't as simple as just sending them a copy of the power of attorney. Check everything out so you don't get blindsided. Good luck.


  • Hi folks, Dorothy, I really feel for you. S used to be exactly the same and still can be like that. I have been on about apathy recently, so we are past the stage you are at, but sometimes, especially where money is concerned, he feels the need to take control. Although, with hindsight, he was trying desperately for me to take over years ago!

    I really feel guilty reading everyone's comments tonight. We are in South Africa for a while, enjoying some lovely warm weather, drinking Champagne while BBQing, life for a few very precious hours has been been normal. It was very tiring getting here, had a few moments, but nothing that a thick skin couldn't cope with!!!

    All I say can say to everyone who can still get out and about. GET OUT AND ENJOY life while you are still able. So it's not easy, big deal, we are all big enough and ugly enough to put up with the crap that goes with making life a bit nicer for your loved one and especially YOU!!!


  • Ah, Heady! "So it's not easy, big deal" You GO, girl! So glad you're enjoying your vacation. Warm weather, BBQ and champagne? Nice! Don't feel guilty - it's cheering to hear about your good time - and we all know you deserve it!I

  • hii heady

    glad you are enjoyment your time in s africa

    you are right 0-ir i cruciaal ot do things whilst we still can


    ;lol jill


  • Hi Dorothy

    I too mark demands on my partner And need it doing immediately !!

    But he Usually does it in his own good time so heis frustrated like u r.i am still able it feedi the cat but often leave a mess on t hr floor OT wherever as I fall over in the I prioress and cannot get the mess cleared up to hiis satisfaction



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