Tonight my husband, who has PSP, told me off for being too cheerful. My heart is breaking seeing him deteriorating in front of me. I asked him, what he would rather have and he said for me to be in his shoes. If I was in his shoes and he was in mine, I have no doubt that his care of me would not, in anyway compare with the love and support I have given him. I cannot begin to explain how hurt this makes me feel and just now, right now, I could walk away. I won't. But this spoiled, selfish, unconcerned behavior is what I struggle with most. He  could not survive without me and his life would be awful in a care home. But just now, they can come and take him away. Tomorrow, it will be better, just need a rant

18 Replies

  • Oh dear we have all been through this, and yes it does hurt after looking after them so well, I am sure as well if the boot was on the other foot George would not look after me the way I look after him, it know how much it hurts when they say horrible things, but I am sure they don't mean it.  Sending you a massive hug and tomorrow will be better xxxxxx🌹🌹🌹🌹

  • Thank you. I am crying but knowing that you understand should help me forgive and sleep tonight.

  • Thank you for your kind words last night, today as the sun shines I am in  a better place and starting this new day afresh xxxx

  • Oh Dottielottie,  I want to come and give you a big hug.  I'm afraid this is one tee-shirt we all have.  Like you, I know for a fact, if it was me in S's shoes, he would be up some stupid mountain, while I lay in a nursing home, that he definitely would not have vetted!!! What can I say, nothing can take that hurt away, only the knowledge that you are doing the best that is humanly possible and although, we all say that our loved ones know exactly what is going on, so should be able to acknowledge and show some respect for us.  This blasted disease is causing brain damage, hence the lack of appreciation! When S goes over the top, I do let him have it, with both barrels,  I will not tolerate bad, unnecessary behaviour.  Sometimes I get a positive response. I let rip the other evening, when I went to bed, he was still awake and squeezed my hand before falling asleep. I took that as an apology!

    Lots of love


  • Heady, Thank you so much, the support from people who know what it is like, is so overwhelming. Friends and family just would not get it. Take good care

  • Oh dear dottielottie

    How hurtful?

    You must be quite distraught, I know because my dad often says stupid hurtful things, in fact only yesterday he did, I thought well that bloody charming! Here am I about to collapse from sheer exhaustion but it's ok for you to talk to me like s**t!

    Just try n erase it from your memory n carry on

    It's hard I know but what choice have we got none that what!!

    Huge huge hugs x

  • Hi Satt, Feeling better today and hope that you are too. Have a good day. Huge Hugs back at you xxxxx

  • Sorry I have just posted a rant on here as well it's so hurtful the things that they say and don't even remember why they've said it. I know like me you will keep on going and wait for the next snipe I can only take so much then have to bite back.  Have a lovely day just remember your doing a marvellous job and we all know it. Take care x

  • York - Thank you for your support. Lets all enjoy the sunshine today. Sending Hugs

  • Hi I say to my partner I know you are suffering at your end but you want to try to see what its like for me at my end and I often say if the boot was on the other foot and it was me he would not be able to cope.

    I have not had a break since last August as the funding we get wont cover the cost of respite in a suitable place Social Services sent round a guy from the Carers Breaks Team (never heard of that one) suppose to help me find respite with the funds and guess what never heard from him since lol.  I think its terrible . xx 

  • Dear Escada

    I get what you are saying. Their is supposed to be a carers charter but I don't get any support. We see the psychi Consultant today and I think it is the day for me to assert myself and let them know how awful it is for me and G. Take good care

  • Its comforting to hear someone say what most of us have to feel. My husband is so angry and resents me being able to do everything including doing all for him. Perhaps the saying You always hurt the one closest to you, but very hard for us carers to listen to. Have your rant and let off steam we have all been in your shoes.  Big hug and take care xxx

  • Putland

    Rant over and in so much awe of the support of such kind and knowing words has brought. Have a good day xxxx

  • Oh this is so hard isn't it! I know exactly how you're feeling and I can relate to all these posts, especially Escada29 as I say exactly the same words to Keith! This awful disease has robbed us all of a normal life, oh what I'd give to get normal back!

    I lost the plot recently and threw a small table across the lounge floor, no injuries fortunately but the table didn't look too well! It's just sheer frustration for this awful situation we're all in 😔

    I'm thinking of you, stay strong.....

    Love and big hugs.....Pat xx

  • Get in Pat!!!!  Well Done! I bet he was better behaved for at least two minutes!  Those wonderful two minutes of respite.  Shame about the table.  Perhaps that's something these charities could look into selling, to boost their funds.  A table, that can picked up and thrown that won't break!!!  Nice and light, so our loved ones could use it as well!  Think of all the frustration that could be got rid of, on both sides!!!

    Lots of love


  • Rant away - We all need to do that sometimes.

    Reading rants is actually supportive.  It reminds me that others struggle as do I.

  • When I first started going out on my own for a few hours I would feel quilty when o realise I hadn't thought about him or even laughed about something .

  • Glad you are feeling better! I totally understand. My husband (when he could still speak) told me point blank that if the situation were reversed he would,"Find a good place for me and carry on with another woman". Really.

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