Many tears this morning

After reading all your posts this morning, so far from Heady Yvonne Georgepa and Kate, my mum and I have cried buckets!

We totally get all of you and everyone on this site! I just wish for all of us that our family friends and health professionals did too!!

Much love to you all x

42 Replies

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  • Am crying with you!

    Another round the world virtual HUG rolling out for all, starting now!

    HUG!

    Jen xxx

  • Bless you Jen! Here's a hug x

  • I agree Satt. This morning's posts ought to be compulsory reading for all professionals, especially the DN's and the people in the CHC funding offices.

    Lots of love

    Anne

  • Here here Heady! X

  • Hi everyone, I am also crying while I write this. The love and care for our dear ones whether it's for a our parents, siblings or spouse is the most priceless gift we can give to them. What a hard road we have to travel daily, but by God's grace we find the strength to carry on. I have learned so much from those who have travelled this road and those who are travelling it like me. My husband A was diagnosed with PSP in August of last year and daily I see the changes in his speech, his inability to walk, problems with his eyesight and some of these are subtle and some more obvious. I wonder what next and when. I try to prepare myself for the unknown and must admit that I am overwhelmed. Sorry, will continue later. Esther(Teeker)xxx

  • Bless you both Esther x

  • Just read your post, my husband was diagnosed last July, and I can see the deteoration very stiff, was getting physio after a cardiac arrest he had the wed before Xmas, but that seems to have ceased. You say your husbands eyes, are they sore and gritty feel, that's what my husband says his is like. No amount of gels and drops seem any good. This psp is a very cruel condition. God bless us all.x

  • Yes tears here, it really seems to have been a tough few months of late for so many here.

    🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗

  • Indeed 😓

  • It certainly has Spiralsparkle. Sending a big hug to everyone. Nanny857 xx ❤️

  • Just got back to bed for morning tea at 7.30, having cleaned and showered Chris after early diarrhoea, washing machine on, then non-stop tears as I read posts !!!

    It does help to know others understand this life.

    love, Jean xx

  • It does help, but how bloody sad we are all in the same situation x

  • I understand the whole diarrhoea thing, we have had several bouts of that. Good luck all.

  • Yes. It happens regularly. Hate it. So much work and I go round sniffing like a bloodhound !

    x

  • Oh God , I know, as u said so much work, it's when he doesn't make it to the bathroom that's the worst, I keep heaving. I've been used to his bad smells all my life, but recently , it's just been so so bad , I've had to mention to the doctor as it just goes through the whole house, surely this isn't normal, or is this another part of this horrible illness.x.

  • Most with PSP seem to suffer constipation but when I have mentioned it to all professionals no-one seems concerned or interested.

    On this site it is a shared symptom. No-one else seems to understand how awful it is.

    x

  • So very true. This is a great site, we could probably tell the professionals a few things.

  • I think it's part of Psp!! Bloody awful stench!! X

  • Its a bit of an emotional day of posts, folk pouring their hearts out and I am sitting here with tears in my eyes. I don't often cry as don't think I would stop and often feel too numb to cry. But today is different and a good cry does give you a sense of release of the overwhelming emotions that this disease brings about. Ben is sitting in his chair trying to watch the football but mostly with his eyes closed, they are very sore at the moment and make him very uncomfortable

    Love to al, you lovely people on this site

    Kate xx

  • So bloody unfair

    Big hugs x

  • Hi all, part 2 of my update. My husband, when he was diagnosed with PSP in August, he took it badly and said that he wanted to spend some time in Mauritius, where he was born because he thinks this might be his last visit. In December, we booked to fly on 26th January. On the 5th of January, he fell down the stairs and broke 4 ribs so holiday had to be cancelled. We are waiting to hear from the consultant whether he is able to go on holiday. His ribs have healed and he is not having pains. His speech is difficult, his walking is painfully difficult and he is depressed and sad looking. My heart goes out to him because he is aware that his condition is deteriorating and it seems to be his last wish (his words) to travel to Mauritius. I am praying that we could go sometime soon. The doctor has prescribed anti depressant for him and I am hoping that this will keep him on an even keel until we know for sure that he can fly. I am coping at the moment but help and support has been offered if and when I need it. I dread to think of losing him. We have known each other for nearly 50years and have been married nearly 47 years. We met when we were both training to be nurses.

    We both also love travelling and have been on quite a few cruises so we have wonderful memories and hope God willing that we may be able to have a cruise this year. I am an optimist and refuse to let this horrible disease defeat us. We have 2 wonderful daughters and 5 grandchildren who think the world of their Dad and granddad. Well that's enough of me twittering. Thanks to you and your support. I feel like I know you all personally. Hugs and kisses. Esther(Teeker) xxx

  • Wow Esther! Ooh the thought of Mauritius sounds beautiful!

    Such a shame about the fall and ribs!! Do everything you can whilst you can, time passes by sooo quick x

  • Thank you satt2015. We will keep you updated. Hugsxx

  • If its at all possible, go !!!

    Finally we are all left with our memories. If anything will help his mood it will be visiting his homeland. And you !!!

    Esther we all have to be optimistic that we can cope and survive

    A supportive family is a real bonus.

    love, Jean xx

  • Hi Jean, yes our daughters are very supportive and hope that Dad and I will be able to make that trip. Hugs to you Esther xx

  • Esther I do hope that you manage to get to Mauritius in the not to distant future, he so deserves to see his homeland and meet up with friends and relatives.

    Love to both of you

    Love Kate xx

  • Hi Kate, I am hoping for that too very much. Love, Esther xx

  • I hope your husband gets his wish and will be able to go on holiday, we are going on a cruise (medditeranian) all been wel 2nd april

  • Can I join the world hug for us all please? xxx

  • Indeed you can!!! Hugs!!! X

  • Oh Martina of course. Sending masses of hugs to everyone. And I am sure that we call feel the love that accompanies the hugs. Love you all. Esther xxx

  • Lots of love and hugs to all you so brave, courageous, selfless, loving friends who don't deserve this very wretched, horrendous psp/cbd. Life just isn't fair. Love jinglesxx

  • Well said Jingles, thank you ❤ x

  • Sorry not been able to comment much with George in hospital, just really hate this PSP. Chin up everyone Yvonne xxxxx

  • No apologies required!! How are you and George, Yvonne? X

  • Still in the horrible hospital, came up to sit with George every day from 9.30 they have just asked me to wait outside for a while, when I came in George was shouting for me, they put thicker in his drink, after I told them not to. Doctors are doing the rounds I told her I wanted to see him she said I could, just waiting for them to clean the ward and then I am going to blow up xxxxx

  • Sorry I am feeling extremely stressed why can't I be there when they give medication? So sick of fighting George's corner, I feel exhausted why do they make things more difficult? Going to let fly today I can feel it. Thank you all for your prayers and wishes and hugs much needed xxxxx

  • Hi Yvonne, as per my other reply to your post, get the hospital management involved and give it to them with both barrels. Take all your stress and anger out on them. Then go back with George all calm and collected.

    Lots of love

    Anne

  • Darling Yvonne can you get the palliative care team at the hospital involved? Equally can you get your hospice involved? I would imagine George would be more comfortable at the hospice? Don't take anymore shit from the hospital!! There is no reason why you can't be with George whenever you want too! Don't be bullied! Hugs x

  • Did that Ann feel better now xxxxx

  • Went into one this afternoon when George was so agitated all sorted out, hopefully he is coming home tomorrow xxxxx

  • 🙏 x

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