Coping with pessimistic Consultants

This topic contains 9 replies, has 7 voices, and was last updated by  Dizzyliz 6 years, 3 months ago.

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  • #124071

    jes1965
    Participant

    Just how are you supposed to cope when a consultant tells you that there is little hope of the treatment your partner is receiving working and that there is no other treatment?!?!?!?!

    I’m petrified but am trying my best to stay positive – only it feels as if someone is squeezing my heart!

    Any tips?

     

    #124081

    cupcake
    Participant

    I guess I should have replied to you on this thread.  My heart goes out to you, and I know where you are coming from.  To cut a long story short, my hubby was diagnosed with Huntingtons Disease 4 years ago, there was life changing for us.  He was medically retired at the age of 49, as cognitively he struggled with thought processing.  He suffered major depression, after the diagnosis and the thought of not providing for his family.  With medication it was all finally brought under control last year, and for the first time in Nov, I thought we had started to get our lives back, and looking forward to some positives, with HD I have known he would probably not live past the age of 65 maybe.

    In April we went on holiday to Tenerife, he had a couple of falls, and when we got home seemed unsteady on his feet, and had shakes in his arms unable to feed himself, 3 trips to the doctors, and oh nothing wrong it’s the HD. I argued saying it does not come on this fast, took him to A&E they did basic blood tests and came to same conclusion. This happened twice, finally I took him again on 12 June, practically fell out with them, and insisted they did something, at first they said he was dehydrated, and put him in a drip, I refused to take him home, and after admitting him to hospital, they discovered MM, he was very poorly and confused and eventually they stabilised him and started the treatment, which was stopped in phase 2 as I mentioned.

    the roller coaster of emotions I can’t describe, how my darling husband can be so poorly and have this dreadful card dealt to him in life.  All hope was taken away 2 weeks ago and all, I can do is cry, I try and be brave with him, but it is a heavy weight to bear.  The last couple of days the pain in my heart has got worse, all I can say to you is share you fears with your family, friends let the tears and frustrations out, it is the only release.  No one can really understand how you feel, I have felt it all, sadness, anger, frustration to name a few, oh and jealousy of people getting on with their lives, not their fault, but I feel so cheated with life for me and my husband.  This does not really help you cope, but I wanted you to know you are not alone.

    sadly with MM it is out of the hands of the consultants, and I think they are preparing you, I case it fails, they do t want to build your hopes up too much as you will have further to fall.  I am thinking they are doing their best, it is a terrible illness and if not caught early, is very hard to treat from what I can see.  I have found it very hard to understand how it can go undetected so long.

     

    take care xxxx

     

    #124082

    jes1965
    Participant

    Oh bless your heart. My prayers and thoughts are with you and your husband. X

    #124449

    elizabethmoore
    Participant

    What a rotten hand to be dealt. Each a horrible illness on its own.All your emotions are perfectly understandable and justified .Feeling cheated of years of “normal”life with your husband and family is so very hard to bear.You are not old which is yet another insult to you.

    Doctors are not always good when faced with such bad news and struggle to be sufficiently kind and comforting to you. What about a Maggies centre? Do you have one of those? they are excellent at providing support for the carer. You must look after yourself as you must be strong to help your dear husband to pass through this dark period. Music can help people and take up offers of help  with visiting.shopping and transport.I shall be thinking of you both Liz

    #124451

    cupcake
    Participant

    Thankyou for your kind words, sadly my husband died on Sept 13th, totally lost and saddened.  He is now at peace , bless him. Xx

    #124452

    annlynn
    Participant

    so. sad for you this morning reading yoour news nothing prepares us for the end even though we know the disease is a dreadfull one. my prayers are with you. ann

    #124470

    cygnet
    Participant

    Cupcake

    I am so sorry to hear your news. My thoughts are with you at this difficult time.

    Sending love & hugs

    C xx

    #124473

    jes1965
    Participant

    Dear cupcake I was saddened to hear your news regarding your husband. My prayers and healing thoughts go out to you xxxxx

    #124531

    bandityoga
    Participant

    So sorry to hear your husband passed away. You are in my thoughts and prayers.

    Maureen x

    #124558

    Dizzyliz
    Participant

    Please except my sincere condolences cupcake after reading you’re husband passed away,
    Thinking of you.

    Love Liz & kev xx

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