Feeling confused

Well George is much better, but he has turned into this horrible person, he is being really horrible to me, say I made him sick, that I don't care about him, he is being so horrible, I just feel like I want to walk out the door and never come back. I spent the last 2 weeks worrying about him, phoning doctors, nurses getting him the best help I could get him, and now all this rubbish coming out of his mouth. I think all the antibiotics have pulled him up, and he feels like he can do anything, which of course he can't, tonight he tried to get out of bed , I told him I would have to put the sides up, he hates the sides up, on the third time he tried to get out the bed, I had to put the sides up, he went mad, banging the sides, saying all these horrible things. I know it is the PSP, but at the beginning he was really horrible, I don't think I could go back to all that again, I gave him a lorazepam to calm him down, he called me, when I went in there he was horrible, moaning about everything. I have giving up my life to look after him, maybe I am being selfish, but for the last 4-5 years I have been caring for him, maybe longer, so I think I should have a bit of respect from him, and some kindness!!!!!!! Maybe I am being selfish but I have also worked hard, like george did, and have given up everything to look after him, not sure if the boot was on the other foot, if he would of done the same for me. Sorry just feeling sorry for myself, and now I can't sleep everything going around in my head, bloody PSP. Yvonne xxxx

37 Replies

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  • Yikes! What a tough place you are in.. Hoping the morning brings a kind and respectful George. I don't know if I could take that-- in my book you are a saint. Will pray that he is clear headed tomorrow.

  • Oh god Yvonne how horrible! I believe it's the Psp and pure frustration, anger and annoyance they feel at having Psp! Try not, to take on board what George says at times like this because I don't believe he means it! I know you've given up everything so have I with my dad and it's so bloody hard when their unkind and show no empathy but the best thing is to literally ignore it, walk away and go back a few minutes later. Another big fat hug for you! You can't run away, none of us can, just gotta soldier on! My mum often reminds me, one day this will all be over!! X

  • Thank you for your lovely reply, you are only young, you need to start living your life, and enjoying yourself!!!!!! XXXX.

  • I'm trying Yvonne, my new bar job helps, although I'm knackered today, after working til 1am lol! Hope things are better for you both today ❤️

  • Yvonne, he doesn't know what he is saying. I know how you feel for sure. Don is back in rehab since I could not handle him anymore. He kept on getting out of bed and falling. I kept on called 911 to pick him up and put him back into bed He did not want to eat, was choking on fluids, I could go on and on. I sent him back to were he has been twice before. Told them that he is not eating, barely drinking. Afraid of me passing out and utter frustration. Is there some place you can send him? I did not go there today, he went in last evening and out of utter exhaustion I stayed in bed all day. Kept on calling, they are pulling tests and tomorrow will try to keep him up all day instead of letting him sleep all day. He was utterly unresponsive to me at home. I thought he was going to die. Called them about an an hour ago and he ate all of his dinner. They cut it up for him and ate all of it. I can't believe it. They are going to put him on a modified diet, just everything mushed up. During the day at home yesterday he had a bowl of cereal and boost to drink. That was it. Do you have a sleeping pill or something you can take to sleep? Try my dear friend.

    xoxoxo ((Yvonne)) virtual hug

    Audrey

  • Thank you Audrey, George is always better if there is someone else here, will do things, but not for me. Audrey you take care of yourself lovely lady, get better, think about your health, D is being looked after, you just need to look after yourself. No one to look after George, but me, still awake, it is 2 o'clock going to try to sleep. I am going for lunch with our son so something to look forward too. George has a soft diet, everything mashed. Audrey look after yourself. Yvonne xxxxx

  • Yvonne, I have to think about my health. WTH is going to take care of me. Bed now. NITE

    Audrey xoxo

  • Is there no way you could get someone in to give you a break...and interrupt the bad behavior?

  • It certainly sounds like you have a right to feel sorry for yourself, Yvonne. I know it's PSP but of all the things I hate the most it is the way he treats me. I will do anything for him for as long as he needs, but when my thanks is him laughing when I get hurt or feel down ...just a modicum of respect is all i need......When I am up it's not so bad, I can handle it. But when I really need him.....please don't laugh at me....The only thing I can hold on to (besides turning to God in my dires) is knowing that it's not him.... it's not him ...it's not him....

    Remember Yvonne,,,it's not him

    (((HUGS)))

    AVB

  • Blimey what a rollercoaster for you I'm so sorry to hear what a rough time your having. This psp is beyond cruel I struggle with the lack of empathy from my mum and that she just expects me to be there with no gratitude. I know it's not mum it's the psp, mum would hate it if she knew how she was treating us just as I'm sure George would. We can all hold our heads up high and know we did our absolute best. Sending you lots of love xxx

  • Oh Yvonne , so sorry this is happening . It must be his pure frustration at having this awful disease ! You are doing an unbelievable job and ahowing your love ! I do hope George is less angry today .

    I fortunately haven't had this with my mum , she is just sad she has this and it's stopping her living normallly now and being in control . She never moans . I just wish I could take it all away and we could get back to normal. I liked normal! 😢

    Sending you a huge hug and thinking about you Yvonne .

    Jude xx

  • So sorry Yvonne. This is a horrible phase you're in. It will pass though and, yes, it's definitely the PSP that makes him like this.

    Vicki x

  • Poor you !! It sounds such a difficult phase. I'm sure its PSP.

    I think that he can only release his bitterness to you. Sad, but the anger has to go somewhere and he knows that you will stay.

    Are there times when he appreciates you ?

    Get away when you can. I believe you have carers come in.

    Love, Jean xx

  • Oh lord Yvonne. I'm not sure if i would be as good as you. I'd rant and rave straight back even though I know they can't help it. My hubby doesn't complain at all or raise his nearly non existent voice. It's usually is me that does that when something iffy happens. Just going downstairs now to change complete bed, including duvet, after he kicked tap of convene bag open. Oh joy. Take care. Marie

  • So so hard to take when you have taken care of G for all your of that time, I'm not surprised you are feeling so wretched. I'm sure you know it's the disease and not G that is responsible for these outbursts but that can't make it any easier to endure. My heart goes out to you Yvonne, I hope that he soon calms down, I'm sure I have read somewhere that these phases often pass so fingers crossed. Take good care of yourself Yvonne.

    Love and hugs

    Kate xxx

  • Wondering about when people say that the anger is a phase. Does that mean it comes and goes like a bad mood, or that they go into a different phase and what would that be? I have the same problem with my Dad. Told me once he wished I had PSP and not him. It is harder to take when you are related. When it's someone you don't know yelling at you it is easier to ignore as part of the disease.

  • No I don't think it comes and goes. It just is like that for a few months and then those symptoms cease and something else becomes more important. In our case the behaviour got easier but he became generally less able, more sleepy and less communicative.

  • V, yes! That is the very thing that happened with my husband. The doctors prescribed every mood altering medication on the face of the planet. Some helped for awhile. He just became less communicative early on so no vocalization except for the awful PSP moanings.

  • Yvonne, poor you, as if the caring is not difficult enough, you really don't need your 'patient' having a go at you. But then PSP does rather seem to give the victim a personality transplant

    I don't know if I have the behavioural problems to come, but F dose seem to very placid and does try not to keep worrying me for things, and at the moment he doesn't try to do things he can't, I am keeping my fingers crossed that he doesn't turn turn into a monster!

    As some of the others have said, can you not pop out for a little while, cheer yourself up, even if you only take a book with you and go for a coffee somewhere

    Sending a hug

    Lots of love

    Debbie xxx

  • Dear Yvonne so sorry to hear how foul your husband is being. PSP is so vile it really does change people in so many ways. For myself i often think it is easier dealing with the physical changes than the psychological ones.

    You must be exhausted after the last few weeks, try not to be too hard on yourself. I walk away so many times I find the only way not to give home therapeutic bop on the head 😠.

    Take care today is anithet day and I hope a better one.

    big hugs

    xxxxxx

  • Hi Yvonne, I have almost the same situation, it puts me in the depths of despair. It's my fault he's like this because I won't let him do things, he'd do the garden if I let him,he'd walk if I'd let him , and so on, plus the hysterical laughing,more so if I'm upset.

    So sending hugs and you are not alone. I say this illness is a double whammy , it takes two lives with it.

    Xxx

  • Hi Yvonne, you have been reading my thoughts and writing for me again!!! Unfortunately, I know EXACTLY what you are going through. Like you say, we have given up our lives for these men in our lives, been caring, consciously for at least five years, probably sub-consciously for at least another five. Yet they can still treat us like something the dog dragged in. S is exactly the same, can barely communicate, only thumbs up or down occasionally and points to the toilet, but he can get his feeling of displeasure in what I do for him across without any problem!!! He has the art of NOT talking to me, down to a tee! Mostly, is a snatch here, a push there and just being down right awkward. I am positive, if the boot was on the other foot, I would be in a home or my daughter would have had to give up her career and partner to come and look after me. Probably the latter, because a home would cost money, never would have fought to get CHC.

    Like you, I get very bitter about this, but what can you do? We can't walk out, won't put them into a home until our knees have collapsed, can barely walk out the room, without the worry of what crazy thing they might get up to. Have to do everything in the book for them, plus a load that nobody tells you about, yet still we get the daggers thrown at us, for not responding 10 minutes before they want something.

    The only thing I will say in George's defence and yours. You have both just recovered from some nasty bug. We all feel crap afterwards, wanting to get back to normal too quickly, well enough to be out of bed, but still feeling too rough to cope. So naturally are very grumpy, thats you and George at the moment. Once you recover fully, things won't seem half as dire. At the moment, George can see your weak spot and is probably very frightened, but can't/won't express that. What you need is a lot more rest. Get on to CHC, now he is better, get him into respite for a week. Then get some sleeping pills and sleep. If he sleeps well at night, take a mild sedative now.

    I don't know if you remember me saying about the 4R's and 3R's. 4R's is what we all do, React! retreat! reflect! regret! We should do the 3R's Retreat! Reflect! React! Even if that retreat, is turning your back and taking a deep breath. It does work, when I remember to do it, which I have to admit is not often.

    Sending big hug and lots of love

    Heady

  • Sending you a big hug and hoping things are a little better today.

    Sophie xxx

  • Thank you everyone, things are just as bad today. He is trying to walk, wants to go to bed, doesn't want any dinner, wants to go to the toilet all the time, opened his leg bag, telling me that it opened by itself, I don't care about him, he keeps giving me daggers.

    I think Heady if the boot was on the other foot, my daughters would be looking after me. George has never been a career when I have been unwell, he would phone up the children and tell them, come and look after mum. He has had these patches behind his ears, reading the leaflet it says side effects are, agitation, etc , so have taken them of, can't stand going back to a few years ago when he was horrible, shouting and just being unpleasant. My son said when we went out together for lunch, mum it's the PSP, I broke down and said I can't go through this again, it nearly broke the family, I just could not cope with it . Thank you all for your hugs, I can feel them around me. Yvonne xxxxx

  • So sorry, Yvonne. It must be so hard. I realise how lucky I am that Chris has never been like that, although he did accuse me of being over protective towards him. I think the nastiness would be really hard for me to stomach.

    Another hug !!!

    love, Jean x

  • Very sorry to hear that you had to be on the other end of your hubby's outburst. I'm pretty sure that's the PSP talking... not him. I know only too well how quickly and how hurtful such words can be. I do my best to always put myself in my wife's/others shoes afterwards when I've had an anal episode... still not totally excusable. I'm still "early" into this disease, so I can't speak for others and only pray that I never get to that point. You definitely could use some respite... if only for a few hours, that can make a difference. Our youngest son is autistic and I know how much a break is badly needed and appreciated. Is there someone that can fill in, even if just a few hours?

  • Went out today with our son, he took me out to lunch, lovely to get away from it all xxxxxx

  • Dear Yvonne careing for your loved one with PSP is so trying at times there personality is greatly effected some happy some mean at times just remember it is not them it's the dam PSP doing it so frustration sets in, we work so hard caring for them 24/7 in a way it's such a thankless job, so don't feel bad the way you feel at times we have all been there some more than others at this point, there minds are in tack and they know their bodies are not so it has to be very frustrating to them to, we are the only ones they have to get mad at to ease their fushstrations. Sending you a big hug. Nettie

  • Oh dear Yvonne - I know exactly what you mean. I researched about Parkinson's and did find the lack of empathy and not caring one little bit is part of it. Parkinson's hits the brain in the area which governs our feelings. I live with this day in and day out. Besides being the caretaker, I make my husband homemade soup or cookies which he loves and do not even get a thank you. I'll ask him a question nicely and he will yell his reply at me. The only way I find I can deal with not walking out the door is to constantly remind myself about the sweet guy I married 59 years ago and wonderful life we had before Parkinson's arrived on the scene. I wish I could be wiser and help you more but, honestly, I don't think there is a pill for this.

  • Thank you for your replies, I hate PSP so much, it is very hard doing everything, with no thanks, I just feeling sorry for myself, tomorrow he is at the centre, so will have a break. Thank you all once again xxxxx

  • No one should judge you if you just had to resort to a nursing facility. As women we tend to be selfless, which should not be the case. I couldn't do it myself. I don't live with my Dad, and even then I feel like it has taken over my life.

  • Yvonne, feeling sorry for yourself is fine, but letting it take you down is NOT! I know things are tough and George is on a downward turn, but YOU can't give in. For George's sake you have to be strong. For your own sake, you have to be at the top of your game. We all know PSP is going to win with our loved ones, but please, please don't let it claim two people in your household. Tomorrow, as soon as he is leaves for the centre, or you get home from taking him. Go back to bed, pull the curtains, set the alarm and rest. I know you have said you can't sleep during the day, but perhaps as you can't sleep at night, things might change. Whatever, just lie there, close your eyes and try to switch off. I promise, things will feel differently, if you manage to get some decent uninterrupted rest.

    Lots of love

    Heady

  • Thank you Heady, you have always got good advice, going to have a me day tomorrow, just going to relax and go out to lunch with my daughter, organised from weeks ago, looking forward to it, my grandsons are off school, so we should have a lovely afternoon, not going to let PSP get the better of me, tomorrow is another day, hopefully a better day. Heady you have a lovely break, be thinking about you X.

  • Yvonne,

    I am so sorry to hear you are having such an awful time with George. It is truly terrible when you are doing your best for someone and they don`t appreciate it or try to make life even more difficult for you both, but as others have said it is PSP (as if we didn`t know already) that makes them so awkward. Still doesn`t make it easier to know that they can`t help it, but deep down I`m sure George would not want to make you so miserable.

    Enjoy your day out with your daughter - you deserve it. Big hugs.

    xx

  • I know, I know, I know. I've been there so many times and then out of the blue he is so sweet it makes me cry.

    It's few and far between. I agree with the part about would they have done the same, probably not but it's fear on their part and fear on ours as well.

    I'm crying today. Lots of things coming my way and sleep is always a tornado.

    Wish I was there to help but know I'm keeping you in thoughts and prayers.

    Cuttercat

  • For me the trouble is that, whilst I know its PSP, when I'm tired and he is awkward I can't hold on to that. It feels personal. And Chris is no-where near as difficult as you describe.

    Forgive yourself, Yvonne.

    big hug from Jean x

  • Thank you all feel the big hug, he has been to the centre today, so had a lovely quite day with my daughter xxxx

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