My head hurts

Feel like my head is going to explode it's not a headache, my head feels funny. Had the district nurse around today another form, the on the 7th September we all meet up the district nurse, social worker, and us the family, So much paper work, but the district nurse was very good. I broke down and cried, when she asked about night time, I just so hate night time, to me this is the most stressful time of the day for me. Yvonne xxxx.

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  • Oh Yvonne my heart goes out to you, we are all suffering unimaginable stress and worry without having to deal with home visits, paperwork etc etc! It's all too much for anyone to bear and the fact that we're so tired doesn't help at all!

    Keith is going through a very argumentative stage at the moment, he questions everything I do especially if it concerns money, he's said some horrible things to me and I feel he doesn't trust me any more. Even after being together for 48 years I'm now thinking that he doesn't really know me any more and I'm at my wits end!

    Trouble is I'm not the sort of person who can let this all wash over me, I react and get stroppy and annoyed then I feel guilty because I know it's not him it's PSP and I don't know what to do!

    He's just fallen again in the loo and I was thinking to myself "Sort yourself out I've had enough of all this!" That sort of reaction isn't going to help at all is but I get so cross and frustrated with it all I can't help it!

    This is all so unfair, our retirement plans have disappeared and I feel we have nothing to look forward to any more 😔

    There, that's my ranting done for today, not sure whether I feel better or worse for it!

    I'm thinking of you Yvonne and send you lots of love and hugs....Pat xx

  • Pat it is unfair. All our retirement plans came to nothing as well as we both left work early due to this awful PSP. At first I kept thinking about the things we had put off until retirement but could no longer do but now I don't look to the distant future but concentrate on now. Looking at my calendar I have things to look forward to in September. U3A meeting tomorrow, meeting up with 5 different friends on separate occasions, some just me, others with C, the PSP support group, uke session and darts at the pub, 2 practises here, 2 art classes, as well as visits to Nat trust houses and local parks on other fine days, we did Sissinghurst and Scotney on Sunday. We also have two family birthdays to celebrate. Thinking too much about what should have been just makes me sad so I try not to. I feel a pang sometimes when others talk about their retirement activities but it doesn't last as we have things to look forward to as well. Not big exotic holidays but short visits and more important, lots of fun and laughter with friends.

    Sending you a great big hug.

    X

  • Thank you NannaB, as always your kind words make a lot of sense!

    Love and hugs....Pat xx

  • Sorry for you, Pat, but *I* feel better for your rant. That's me all over, stroppy and guilty. Thanks for reminding me I'm not alone. Hugs, ec

  • I'm afraid patience has never been my strong point although I think I'm improving with this situation, as to guilt, well that has always been my weakness!

    Love to you....Pat xx

  • Pat, please, please remember, this is your husband. Not your patient! So since when was it NOT Ok to tell your husband EXACTLY what to do, if he upsets you!!!!!! That's what is SO hard about this caring lark. We all still react as you would have, a few years ago. I am constantly telling S to sit up, take small sips, bites, will he listen to me? No chance. I often end up screaming, "choke, see if I care!" Same with falling, tell him how not to fall, so he does the opposite. Yes, I am crying with you "get yourself up!"

    Of course, we ALL feel guilty afterwards. But it's totally normal. We all have shouted, screamed at our husbands at times. PSP is not going to change this. We all have said things we don't mean. That's life, PSP is not responsible for our married life and the rows that causes. What PSP is responsible for, is taking this away from us. None of us are "married" anymore, that's why we feel the guilt. That's why every so often, we MUST give our lovely husbands a real mouth full, vent every feeling, good and bad, just to that normality back in our lives!

    Well, that's my excuse and I'm sticking to it!!!!!!!!!!!

    Lots of love

    Heady

  • Heady what you say is very true, is there ever a perfect marriage? No I don't think so, we can't change because of our circumstances!

    Thank you, I don't feel quite so guilty now!

    Love and hugs....Pat xx

  • As Pat said Heady, what you have said is so true. I don't really have cause to shout at C now as he can't do all the dangerous and annoying things he used to but I did feel so guilty when I did shout, as in 43 years of marriage, he never once shouted at me. Of course we had disagreements occasionally but if I raised my voice he would calmly say, there is no need to shout, I'm not deaf. When PSP arrived and I shouted, he said the same but then one day I shouted and he didn't tell me to stop but a tear trickled down his face. I felt dreadful and we both ended up crying and hugging with me saying I'm sorry and I wouldn't shout at him again. I didn't..........until the next time, not long after!

    x

  • Pat, Heady is right! I have not been on here in a very long time. Breaking down a huge house alone and moving with a PSP person was a daunting and exhausting task. I have lost it on more times than I care to admit. I have even threatened to put him in a facility. How awful is that? We don't have husbands or wives in the traditional sense. The move really made me aware of how much I have lost. But we still love them and are doing all we can. Stop beating yourself up and give yourself credit for all the things you do on a daily basis. Know you are understood and not alone. Big hugs.

  • Gold cap, Hi, where have you been?????? Well, I can read from your post that you have moved. That must have been really tough! But you have survived, so WELL DONE!!! Of course, you threatened to put your husband into care, I don't think there is one person on this site that wouldn't have. My only surprise, is that you didn't carry it through, on a couple of occasions! I know I would have!!!

    Glad to have you back!

    Lots of love

    Heady

  • Hi Patriciapmr, Yvonne

    Its good to rant and take that anger/frustration out of our system - I too went through this and especially the guilt of having him placed in a care

    facility - I visit him almost every day and also have private nursing on days

    I am not able to make it. My husband rarely shows me any emotions

    but does smile when the nurse comes - he does have long sleeps and

    now has to be lifted by the machine and again it was difficult for me to

    see this - I know we are not alone - PSP does take away all our energy

    but the counsellor says we are only human. Wishing you all strength

    and courage - have had days of crying etc and now trying to understand

    its not their fault and we do have to journey on.

    Good luck and keep on smiling

    1009luck

  • Thank you, your words make a lot of sense and have helped me, I will try my best to be strong and positive for Keith's sake!

    It does help to know I am not alone in this journey with PSP!

    With love....Pat xx

  • Thank you for your reply, I will try to keep on smiling!

    Love and hugs....Pat xx

  • Know the feeling, Yvonne! I am back at work at work during the day so nights are doubly stressful for me now. Of course I worry about him during the day. But I also know what awaits me at home. Catch up on the cleaning. Walking into a smelly house. Mopping. Hopefully no laundry. I've been doing pretty well with getting it all done on weekends and stocking enough items to last the week. Of course, I realize all that will change as soon as he progresses a little further. Right now he is making it with his walker to the bathroom in the middle of the night. I can hear him rattling along. And he doesn't sleep all night. He gets up and watches TV part of the time.

    My hope is to make it through May, the end of the school year, so I can retire and be there for him full time.

  • Pat George went through the money thing, I am like you I can't ignore it, so ended up so stressed, and upset with him, I also felt bad after, but you can only take so much. He is better now does not mention money, saying that he will more than likely say something. Pat don't take it to heart, it is the PSP, try to ignore it, the councillor I am seeing said this big Guilt that we feel so something that most people go through, how would they deal with it if it was the other way around?

    Jmhk glad all is going ok with you, I hope you can get through until May and it won't be to stressful for you. Sending you both a big hug. Yvonne xxxxxxx

  • Thank you Yvonne, we have been to a group meeting in Sheffield today and for the first time Keith has met other people with the same disease, not sure if it has helped or not because all he wanted to do was go to the toilet (for a change!) beginning to think it was just a waste of time, although I got a lot of support from other carers.

    Yvonne I just don't want this, I am slowly losing it, I so want it all to go away but I know it won't, if I could make him better I would but I know I can't, so the tears are flooding again!

    Feeling down again....Love and hugs....Pat xx

  • Pat we all understand how you feel, if possible would all get rid of this horrible illness, at least you met some careers, you are not alone Pat, it feels like it sometimes, when you are in the dark tunnel, and you feel that there is not way out, but we ALL will get through all this, maybe make us stronger people, no one knows . Then we feel bad when we get upset, but we are tired, hard working people, trying to do our best. Sending you a big hug. Yvonne xxxxxxx

  • Sending you a big hug as well Yvonne!

    Love....Pat xx

  • Unfortunately having this condition is as bad for the sufferer as it is hard for the person caring for us. We just pray for a swift end to it all. Where's that miracle got to?

  • Yvonne, your head has had enough. My head feels funny too. Headache or just exhausted, I don't know. I stayed in bed almost all day, my throat hurts and the idiot PT who came today told Don he is so much weaker than he was when he first started with him. Big complaint from me tomorrow to the company, unfortunately they are closed now. i thought I could rest a little since he has worked with us so many times. Guess you can't trust anyone, I take care of all of the bills and have for a while. D ate more today than he has since he came home but he is very upset about what the pt told him. I am so happy he ate more. Still no ot has turned up, I am furious. speech therapist left a message that she wasn't coming since the Dtrs orders are not in the system yet. I am so frustrated, he is still so weak. Called the Dtr and left a message, no answer. I do't know who to call first tomorrow. You are strong sweetie. I have papers all over the place that have to be taken care of. They will wait. HUGS AND LOVE FROM ME TO YOU, AUDREY xoxo

  • YOUR HEAD IS FEELING, YIKES ENOUGH ALREADY. I FEEL IT EVERY DAY XOXOXO

  • Oh Yvonne, I think we can all relate to what you have said. It may not have been a bad thing you breaking down. I know you feel awful about it but at least the proffesionals can see what this is doing to you and hopefully try to improve the situation for you.

    Sending you a big hug and praying you get some sleep tonight.

    X

  • Thank you all, still awake and it is nearly 1 o'clock don't feel like sleeping xxxxx

  • It's pure stress, never a moment 'off'. I'm not the best one to advise but if you get a little moment 'off' you need to take it. My mum and I went to visit a nursing/retirement home and they have the best idea: they accept one-day and short stay visitors so that the carer gets a day off and the patient can stay at home longer (because the carer doesn't reach breaking point!!!) and when time is there for a long stay, they already know him/her. My dad didn't want to go but he now realizes that if he wants to stay home longer, he needs to do it for my mum, so he will try it. I feel bad because I had to say 'no' to him yesterday. I came downstairs to see if he needed anything before I went to sleep by 10.30pm or so and he wanted me to help him on a file he's working on. I said, no, I'm going to sleep now, I have to go to work in the morning, why didn't you ask me before - I was here all afternoon! So we'll do it today. It must be horrible to be so dependent, needing help for just about everything, but at the same time, we also have a life.

    Good luck everyone with surviving yet another day!

    Lieve x

  • Thinking of you, Yvonne,

    It feels as if the whole world is on our shoulders, doesn't it ? So far I get sleep most nights but , when I don't, the stress is incredible. I mostly feel I am drowning in things to do which I haven't done. Do you know that poem " not waving but drowning " by Stevie Smith ?

    Its the constant having to check whether things are happening. I just feel on the edge of overwhelmed all the time.

    Let them see how stressed you are. You need a break.

    Love and hugs, Jean xxx

  • Yvonne I told our neurologist from day one that she had to prescribe adequate sleep meds for C so that I could sleep, as I cannot cope without my eight hours. C has always been a bad sleeper, getting up in the night to make coffee and food then coming back just before dawn and napping for a couplemore hours. It took a while to find the right meds but he now takes three 25mg Seroquel half an hour before going to bed and this is topped off with two 10mg Laroxyl once he's in bed. The former is actually a sedative, Laroxyl an anti depressant but both are also used as sleep meds. I have permission from the neuro to increase dosages when I feel necessary. In fact I have just upped from 2 - 3 Seroquel and 1-2 Laroxyl. We will see out neuro next week and I will report the increases. Prior to increases meds had worked well for eight months. He does not seem to have any drowsiness from the meds when he gets up in the morning and sleeps around 12 hours each night. I have been woken by him getting out of bed three times this year, two of those in the week before I increased the dosage. I simply do not understand why all/more doctors cannot do this. He is double incontinent so wears diapers and is changed before bed and first thing in the morning. Try talking to his neurologist and see if effective sleep meds can be prescribed.

  • Yvonne hope you had a nights sleep and the head has cleared, I have a muzzy cotton wool in the head feeling at present but that is due to no sleep for 4 nights, hopefully her constipation has shifted this morning so I may get a nights (4 hr) sleep tonight. The fact of having to make all the decisions without the usual input from M is the stress for me, she is no longer interested in issues such as clothes, food or finances which she always had a say in. This seems to be an issue that as a carer I was not prepared for.

    I agree with pattz that sleep meds should be prescribed from beginning for PSP patients, I think it is too late now as if M is knocked out by Lorazepam she wets the bed, yes I get sleep but the morning after is a pain. So I only use it sparingly. Anyway time for me now as M in local hospice for day well until 3.

    Best wishes Tim

  • Yvonne, I am so sorry for you. PSP is such a cruel disease, not only for the patient but also for the carer.

    Everything gets on top of us all at some point, so we can all empathise with you at this moment, however that doesn`t bring any relief for you.

    I am certain you need to have a respite break before it all becomes too much. Please talk to your family, the nurse, the social worker, anyone who will listen , that THEY need to organise a rest for you as soon as possible.

    x

  • Thank you everyone for your lovely helpful comments , still got a funny head, we are going away in a couple of weeks, then going away with my sister in law just the two of us in November xxxxxx

  • Hi Yvonne, know what you mean, darkness is a real downer! Dreading the nights drawing in. At least at the height of summer, sleepless nights don't go on forever, like they do in December! Still got to survive September, October and November,before I worry about that!!!

    Lots of love

    Heady

  • Hear hear Heady xxxxx

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