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  • denise
    replied
    Thanks Tess for your quick reply. I am feeling very stressed lately. You know that feeling when you wish you could have a good cry but it doesn't happen. Thanks for being there.
    xxx

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  • Tess
    replied
    Sorry to hear this Denise, nothing worse than feeling alone when this is the time support is needed the most for everyone and sounds like your network out there isn't really the best. Horrible as it is, it often takes something big or horrific to occur that people show their true colours.
    Sounds like an open discussion is needed to see whats best for the family. Not an easy decision, but I hope you come to a conclusion soon to put your mind as ease.

    Tess x

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  • denise
    replied
    oh my. what we are all going through. i think i have said before that i thought there was something wrong with my husband. i told our kids that something wasnt right. dementia perhaps i wasnt sure. after looking up his symptons on the internet i began to get a horrible feeling that it was mnd. i didnt tell my family or even him what i thought. it was still a shock to find out the truth and we decided to tell the family straight away simply because i had already mentioned to them that something was wrong. they handled it really well though i am not sure how they did in private. my husband has been quite open about and tells everyone he meets.
    we had our long awaited hospital appointment. the odd thing was the doctor told us that he had tried to cancel because there had been a situation at the hospital. i have no idea what the problem was but after waiting so long to see him it would have been a real blow to us if we hadn't seen him. he is our only contact with the medical profession. it would seem that you guys get a whole more support than we do here in portugal. anyway i told him about my worry about dementia and that i was worried that there was more to his diagnosis that was first thought so he organised blood tests and this will also show if it is genetic - something else to worry about. i dont know how stephen will feel if it is and we have to tell our kids. the doctor has also organised a another appointment with regard to the feeding tube and now he has a breathing mask and every month someone from the hospital will come to check on stephen to see how he is getting on. thank goodness for this because at least we will have contact from someone. i am starting to feel that we really do need to go back to the UK. i feel we will need support from family and whatever else is available. our home is not suitable for whatever this disease throws at us and having my daughter just go back to the UK makes me feel even more alone. i haven't pointed out to my husband the fact that we are going to need more support and i need to bring this up with him. i dont know if he is avoiding the situation or just not giving it any real thought. i dont even know what we will do when we go back. i thought we would be living happy healthy lives in the sun but apparently we wont be. its funny but when you think you have friends and you are in a siutation like this you believe or hope in your heart that they will all be there for you and then you find out that they couldn't get away from you quick enough. love to everyone and sorry to be so miserable but i feel better sharing than keeping it to myself.
    xxxxxxx

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  • matthew55
    replied
    Every day my friend, living life how I choose till the end. x

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  • Ellie
    replied
    You on the Wacky Baccy mate?? 🤣🤪

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  • matthew55
    replied
    Drama queens are us 😂 x

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  • petermessi
    replied
    Hi Tess,

    I am so sorry you are in this situation but well done for respecting your partner's wishes.You are a loving and devoted partner. It is very tough situation for you as you're not getting the support you need.

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  • Tess
    replied
    Yes a relief indeed all round! Yet many hurdles still ahead....mind you having not seen faces up till now with Covid, the family visits have been exhausting!!

    A very personal decision but anyone who is battling this and in a relationship or even with family looking after you, will know already the strain this disease can have on the relationship. From decision making, being respectful of one another, listening to one another and let one another grieve in their own way...it has certainly come with its challenges.

    Given that I'm the 'carer', often I do have to think of, if it were me in the other seat and the frustration involved....It's tough going, especially as no two humans may go about things the same way.

    Tess x

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  • Humaira
    replied
    Hi Tess,
    it's a really scary thing to have to tell people. Almost as if saying it makes it even more real and unbearable. Having to see the way people react each time is tough too. This may sound silly, but if he is reluctant to tell family, would writing a letter be easier? That way he doesn't have to see them and it's a bit more detached. Writing just 1 letter and giving it to the whole family to read, or sending 1 email to everyone. And then you can add that you don't want sympathy or pity (if that's something he's worried about), but it's just so they are aware. Good luck!
    Humaira x

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  • Delta
    replied
    Hi Tess

    Just read your last post. I’m SO glad your partner has had the strength to share his diagnosis with his close family and is feeling relieved that he has.
    Keeping it a secret just leads to one lie after another and it’s additional stress you could do without.
    Wishing you both much love xxx

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  • Shaun
    replied
    Hello Tess I’ve been keeping an eye on this post and am pleased the family now know. We all react differently to the news and as Doug says it is a personal choice and you have to accept it yourself first, but it will get easier for him, still difficult but easier. My wife tells Anyone and everyone now, and I’m not bothered and in someways takes away the pressure of pretending it’s something else. When he’s ready he can join the forum for himself, best wishes S

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  • Barry52
    replied
    Thanks Ellie,

    I was having a Luddite moment.

    love Barry x

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  • Ellie
    replied
    Originally posted by Barry52 View Post
    Again reverse order so I have to scroll through all posts to arrive at the most recent.

    barry
    If you click the Latest Activity tab at the top of the page, posts are displayed latest first.

    Posts displayed latest first (2).png

    Love Ellie.
    Last edited by Ellie; 12 July 2020, 16:51.

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  • Barry52
    replied
    Again reverse order so I have to scroll through all posts to arrive at the most recent.

    barry

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  • Doug Carpenter
    replied
    Phew!

    Well done you two.

    I haven't commented up to now because it was such a personal decision. But I am so pleased and relieved you've told your family.

    Good luck for the future.

    Doug

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