A heartbreaking moment

Just had the barber in to cut dad's hair, I watched whilst dad actually sat up well in bed and his hair slowly disappeared, my heart broke and the tears flowed as I looked and thought my dear dad is literally disappearing before my eyes! He suddenly looked so little and so so frail, I had to walked away and cried like a baby! I'm still crying, dinner in the bin (although I'm bloody hungry, missed lunch too) Our beautiful carers noticed my tears and told me I gotta be strong, well why have I? What have I or mum or you gotta to be strong when we don't feel like it? Fxxx all positive comes from Psp just upset, tears and pure hell! I want this to all end, I want to run away (and take mum with me) but I can't! I want us ALL to be free of this bloody evil Illness and for us ALL to live a happy and fun filled life! Whom I'm kidding, this is gonna just drag on and on and on?! X

52 Replies

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  • Oh Satt

    Hugs to you.

    Big hugs.

    This PSP is repeated loss... loss on loss on loss.

    Hugs and warm smiles

    Kevin

    XXX

  • And more.....xx

  • and more\!

    ;ol jill

    xxxxx

  • I know what you mean. Chris' treat is when I take him to our local Turkish barber who gives him a wet shave.

    His hair grows big and wild and his eye brows sprout. When he is done he looks like a tiny head. I like a bit of hair really. He is still a handsome man though.

    Its really hard when we suddenly see clearly. Our memories protect us a lot of the time, don't they ?

    love, Jean x

  • Oh Jean

    More tears, yes, absolutely, handsome darlings being slowly taken away! My dads always been proper handsome, the ladies love him, but this afternoon oh my, that disappeared from me! I'm just looking at a lil frail old person that I swear can't be my dad.....but of course he is! Where's he gone? Where have they all gone? Stupid stupid hateful Psp, your evil and we simply HATE you! X

  • Massive hugs to you. It is so hard when it hits you like that.

    I've had tears flowing today too as Mum is so distressed and looks so vulnerable with all this carer crap.

    Hugs

  • Aww spiral so vulnerable, so hard, such a killer! I'll be thinking of you and mum tomorrow with the new carers 🙏 X

  • Thanks. She just said to me I don't want to see carer tonight ever again, she is from office & a moo bag. I'm going to cancel it I think as she has been in tears again. We can manage for one night (I hope)

    Have your tears dried for now?

  • Awe bless your mum!! I hope you will be able to cope!!

    the tears have stopped, I feel drained, completely!!

    Awaiting DN now, pad change and a suppostrie required.......and so it go on and on x

  • Still no joy on the western front?

  • It comes and it goes spiral, mostly goes, so again intervention is needed, that's after 3 x double laxido, loads of senekot, lactose and brown sugar and baked beans! Dear god my bowels would collapse!!!!! X

  • Ha ha yes mine would be certainly exploding. Did massage help at all?

  • No!!!! 😓 I swear it's like giving birth?! X

  • zmad more

    loljilll]

    zzzzzz

  • Big warm hugs to you. You don't always have to be strong. We all have our weak days.

  • Yeah thanks Psp wife agree we don't always have to be strong, and why should we? Would everyone else be (in our situation) I think not!! X

  • Big hugs Amanda xxxx

  • Likewise Yvonne x

  • nme 2

    lil jill

    #xxxxx

  • Hi Amanda, that's why we all feel soooooo alone. We are the ones that CAN cope. The rest, have long since taken to the hills.

    Of course you don't have to be strong all the time. If fact it's illegal! You must try and find a place and a time to let yourself cry. I often spend an hour, when walking the dog, tears rolling down my face, desperately trying not to lose total control. I need to realise that valve, or else I will explode.

    Your Carer was wrong, instead of telling you to be strong, she should have been force feeding you. Come on Satt, you can't afford to miss meals. If you collapse, who is going to look after your Dad??????

    We all hate PSP with a vengeance, all want it over, but never end. Giving up and not eating is NOT going to speed things up!!!!!!!!

    If you are reading this tonight, go and get yourself something to eat, wash it down with a glass of something nice. Give your Dad a big hug goodnight and take a big box of tissues to bed.

    Lots of love

    Heady

  • I'm reading heady and crying

    Thank you for your wise words

    Just having a debate now with night nurses with "should " they administer suppostries? Ffs it's it's in their file"said ongoing " what more bloody info do they need? Honest to god? I'm sick and tired of this!!! I'll need to call the GP tomorrow and get the file updated even though it's unnecessary!!

    I had 1/2 a pizza with 🍷In the end and still drinking 🍷

    Thx again darling, big hugs to you and S x

  • Well Done. Good night!

    Lots of love

    Heady

  • Hi Satt, sending you the biggest hug of hugs, just wish I could be there to give it to you in person. I agree with Heady, you must take care of yourself so you can be there for your mum and look after your dad. Please find some way or place where you can have 'some me time' and definitely shout, scream, let it all out don't hold back. You know we are all love you and are here for you. Is that bottle of wine finished yet 😘😘😘 I'm having a hot port as I am dosed with the cold. That's my excuse and I'm sticking to it. 😄😄

    Love, Nanny857 xx

  • Aww bless you nanny thank you!!!!!!

    Mim has just turned over to I'm a celebrity get me outta here, one of em said they need a challenge, mumsais to the tv, come on over I'll give you a challenge!

    Hope you feel better soon ❤️

  • Love your mum's response, made me laugh. xx

  • Amanda you look after yourself, and your mum, get out and have some fun days, you are too young to be stuck at home day after day, go have some fun xxxxxx

  • Sending hugs & love to you. X

  • Thx suze x

  • Hoping that you get some rest tonight & that tomorrow is s brighter day for you X

  • Amanda I know exactly how you're feeling, we all do, I look at Keith when his carers are getting him ready for bed and I'm filled with despair and sadness, this bloody illness is destroying him and there's nothing I can do, he looks so frail and completely fed up. To top it off he keeps telling me he's coming home tomorrow, I'm thinking now that maybe I should try to have him home each weekend but I'm not sure that's the right thing to do or even if the care home would agree to that?

    I've never, ever experienced anything so horrible as this or even come close, it's heartbreaking....

    Sending you a big hug and lots of love....Pat xx

  • Aww Pat darling you've so so done the right thing, Kevin is safer now and you must put your faith in the home! However I do understand you must be feeling truly awful !! You wouldn't be able to cope even for a weekend, trust me on that! Me n mum are here together and I'm coping badly today! The night nurses cane an hour ago did the suppostries and we've just done another pad change, awaiting a massive pooh! God help us! I'm gonna try and get some sleep, am drained, as I'm sure you are! You try too 💋

  • Ooh meant Keith sorry!!!! X

  • My children, or adults should I say, have offered to help me at the weekends but I'm not sure it would work that easily, my daughter has three children, my youngest son works in retail so it would be impossible for him to get every weekend off, all I know is that I don't want to witness Keith looking so sad and lost any more, I cry buckets of tears and burst into a complete mess any time anyone asks me "and how are you Pat? ". How do they think I am, happy? Are they completely mad or is it just me feeling sorry for myself, I really don't know any more, I feel like I'm losing the plot! xx

  • Aww Pat it's normal to feel like we are going insane! Who wouldn't? So yes they ARE mad asking how you are! Other people don't get it! Please darling don't put yourself through additional hell by having Keith home at the weekends, the dangers involved don't make it viable x

  • Know what you mean. People just don't know what to say but I just want to scream at them.

    Its a nightmare but I don't think having Keith home for weekends would be in his best interests. He looks lost because he is feeling lost. Trust your own feelings. Your children are trying to " normalise" it.

    You know the reality of caring at home.

    BIG HUG,

    Love, Jean xx

  • Dear Pat

    I know how you feel. My husband was meant to be in the Care Home for a week! That is over 2 months ago as he ended up in hospital with pneumonia. He has only really recovered from that niw. It took a lot out of him and physically he is much worse now. I can't even lift his head to put a pillow under it!

    He keeps telling me to get the bed! The reason he went in there. So we could empty a room and get a hospital bed. I have been torturing myself over it feeling I have let him down but I know in my heart I wouldn't be able to cope alone. Like you I have two adult children. My daughter never has time for anything. So there is no way she would be able to help. My son would but he certainly wouldn't stay with me to help. He would just dip in and out. There is nobody else I could ask or who would be willing to help. We really are alone aren't we? Before I found this site I used to just cry alone. Now at least I can cry with you all. It broke my heart to read your post because you think you are letting him down? That is exactly how I feel. However the reality is we just couldn't cope no matter how much we might want to. I know I want to be Superwoman with all the physical strength to cope. Bet you do too? The truth is we are only human. We have done and are still doing our best.

    Pat you are a lovely lady. Your husband is lucky to have you as you love him so much and watch over him. Someone said you can now be a wife to him and that's true. Not how it was meant to be Pat is it? A huge hug to you from one who is feeling exactly the same!

    Marie_14. X

  • Dear Marie, thank you so much for your lovely post, it helps so much to know to know I have so many lovely people who understand my feelings exactly....

    Take care....love and hugs.... Pat xx

  • Think I have fermented grapes for dinner most days!!!

    And people who say'stay strong' P**S me off! What the **** do they mean???? I'm not strong never have been never will be

    Love Debbie xx

  • Exactly Debbie ❤️ X

  • I feel the same. It feels they are saying " you hold the fort. Good. Now I can go !"

    I have no choice. He has no choice. We just do our best.

    I'm certainly taking too much alcohol but it keeps me here.

    I don't think I will ever stop crying. It feels like an ocean behind my eyes. As soon as I think of the situation it seeps. When I'm enjoying the Autumn colours I miss Chris as he was. And so it goes on - - -

    Love and hugs all round.

    We seem to all really need hugs at present !

    love, Jean x

  • Jean, I too am taking too much alcohol, it gets me through each day and night, but I inevitably end up in a crying mess so it probably isn't the best thing to do but I can't help it, it's so awful isn't it, I'm so glad that we have each other to lean on through this nightmare!

    Sending you hugs....Pat xx

  • Yes, there's no way I'd cope without all of you!! X

  • Well here's a big fat cuddle for you Jean! Sending you lots of love too x

  • Me too Debbie, fermented grapes on toast! xx

  • Do fermented grapes count as one of your five? Or 2 or 3 even!!!

    Debbie xxxx

  • some days 3 !!!!

    xx

  • I love it, fermented grapes on toast! What an ideal diet. I know a few years ago, I suggested to a newbie, to buy shares in their favourite tipple, wish I had followed my own advice. I do try hard to limit my intake to certain days, mostly those that end in a "Y"!

    Pat, I have followed your posts about having Keith home at the weekends. I know how hard all this is for you, but you have remember that Keith, is where he is, because his symptoms need more care than can be given at home. He needs two people 24/7 now, permanently on duty. You would need all your children, plus half of the neighbourhood to fill the rota and that's just for the weekend. Imagine how awful Monday's would permanently be, for both of you. Keith is safe, well looked after. You are finally doing the job you are MEANT to be doing, that's being a loving wife. That's what he needs most now, to know you are there, still loving him. Not the exhausted, worn out, screaming mess that I am and you were just a few weeks ago. That's great that you are feeling stronger now, but put the new found strength into being a wife, not a Carer.

    Lots of love

    Heady

  • Hi

    It. Sounds odd but now way down this road I view the whole journey as a bereavement but physically the shell of the person is there. So you go through all the stages denial, anger( a lot off that) disbelief, despair and the list goes on, but we do not have the luxury of knowing when the end will be. Rog has nearly died twice now but the b****r keeps coming back! And that is without any active treatment which he has declined , I think you kids have probably more to deal with as you have to watch one parent die and the other suffer as well as your own grief. our girl said to me last week ' mum I don't think I have any worry left in me' again and again I say we can do it but it is the system that lets us down! The tears are dripping on the I pad as I write !

    You will get there

    Juliex Rog who is snoring x

  • A very true post! Thx you Julie! Hope those tears have dried up?! ❤️

  • Yes. I feel the same.

    xxx

  • Sending you strength to carry on. It is such a cruel disease. My Mum has had it for years now and it is so unforgiving, I really understand how you feel. I have been racked with guilt for wanting it to be over. Be kind to yourself, it's ok to be angry. Best wishes.

  • Thx you rufflehead x

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