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Telling Family

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    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.


      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


        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.