Such negative thoughts.

Discussion in 'I have a partner with dementia' started by Eleonora, Dec 7, 2014.

  1. Eleonora

    Eleonora Registered User

    Dec 21, 2012
    171
    Abingdon Oxfordshire
    I’m having such negative thoughts,:( and I’m pretty certain that I can’t be the only one who has found themselves,( to their horror) wondering if it would be better if their partner died, no matter how much he/she is loved.

    My dear OH had a massive epileptic seizure last night, and has been sleeping most of the day. His only words have been such a pitiful, ‘Oh darling’ endlessly repeated, when he was awake for a short while.
    He is eight-nine and, apart from the regular epilepsy seizures, he has had mixed VD, and Alzheimer’s for nearly eight years. He is unable to walk, and is almost blind. Recently he has been doubly incontinent, and I am doing my very best to care for him at home, with no help from our family.
    If he pulls through yet again, his life is mostly composed of frustration and misery, although he is still very loving towards me, and I love him as much as ever.
    I wonder if I am being unfair to fight to keep him going – or am I just upset, and scared by the manifestations of his various illnesses. Am I frightened to face the future without him – fifty odd years together is one hell of a long time, and I am terrified of losing him.:confused:

    If anyone out there has had similar negative thoughts, I’d be grateful to hear how they resolved their doubts.
     
  2. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Eleanora my heart goes out to you l have been with my hubby for 54yrs he has had AD for 7yrs but because our love is so strong he has alwYs adored me that keeps him going. You must be the same as us, our love keeps us going, you are doing a wonderful job caring for your hubby, l will do the same, l do have two good sons, both on broken marriages so help me alot, as they are on their own. I do hope you get some help as it is very hard on your own, l admire you, take care ♥♥♥
     
  3. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    5,737
    North East Lincs
    My thoughts are with you at this dreadful time. I am not sure they are negative thoughts it must be a very difficult time for you and all I can offer is a big cyber hug.

    Grey Lad
     
  4. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,042
    Eleanora, I don't have a husband of fifty years but am so moved by your post. I don't think yours are negative thoughts but human thoughts, when those we love are suffering so it is love that thinks it may be better for them to go, to be free of it, that is loving, because of course you don't want to lose him. It must be so painful for you and so difficult caring alone, you are a star, I so wish you had some help and support as those 'negative thoughts' wouldn't raise their heads so readily and if they did would be gone sooner.
    Love to you
    Suexx
     
  5. garnuft

    garnuft Registered User

    Sep 7, 2012
    6,589
    Sorry to have to tell a long tale before I get to the point Eleanor.

    My first daughter was born profoundly disabled and died when she was 18 months old after a series of failures on the part of the NHS and purely being observed to see how her illness would progress (she had a unique syndrome that hadn't been observed before) a traumatic operation, then her death followed.

    Then I had my oldest son, he was healthy and strong.

    Then I had my youngest, he was disabled too and shared the same, still unnamed, still unique syndrome with his sister. (a few of the syndromes he has have been named but not all).

    I worried, worried, worried that he would die.
    I never could imagine him hitting 5 years old, then 10, then 20...he's now 27 and plagued by skin cancers and cysts in his jaw and kidneys that have a potential to be aggressively cancerous in the blink of an eye, dreadful seizures that suppress his breathing.

    I am 54 and I worry about what will happen to him if he doesn't die...and I do.

    So I am trying...very much against his will, to untie the apron strings and the heart strings in an attempt to prepare him. So he's solid and set fair in case a double decker bus squashes me.

    He has a life to live, he is happy, he is young, he struggles.

    My Mam.

    I longed every night for her to drift away, quietly, peacefully, trauma free.
    She was 86, she'd lived a full life and a pain free, peaceful death was the best I could hope for her.
    And I wanted it to happen before she lost her dignity as I knew her faculties were not going to descend as quickly.

    She was granted that peace.

    I don't think you're wrong to hope for that for your darling husband, it is the best most practical wish you can have for him as your other wishes...for him to be well and not afflicted by such a dreadful illness...is a empty dream.

    So sorry he is so unwell, it must be very scary and hard for you...I still find seizures to be terrifying...

    Sometimes the only thing we can do is to ensure we make the end as peaceful, pain and anxiety free as we can for the people we love the most.

    It's the ultimate way of proving it.

    You are so brave, so strong, so loving. x
     
  6. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,433
    Female
    Dundee
    Thinking of you Eleonora and understanding your thinking. Wishing you strength and your husband peace. x
     
  7. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,535
    North East England
    So moved by your post, Eleonora. I don't know what to say or do to help, but had to say something. Your love for each other shines through. xxx
     
  8. truth24

    truth24 Registered User

    Oct 13, 2013
    5,726
    North Somerset
    So sorry Eleanora. You have so much strength that you make me feel ashamed that I could not continue to look after my husband at home. He is 85 and in a similar position to your man but without the epilepsy. We too have married for 50 years. You are so brave and I do understand how you feel. Wanting your husband to be free of his suffering but dreading letting him go is a natural reaction and there is nothing at all to feel guilty about. Thinking of you.

    Sent from my GT-N5110
     
  9. truth24

    truth24 Registered User

    Oct 13, 2013
    5,726
    North Somerset
    Oh Garnuft. You have experienced so much tragedy and suffering and yet you can always put in a word to cheer us up. God bless you.

    Sent from my GT-N5110
     
  10. Eleonora

    Eleonora Registered User

    Dec 21, 2012
    171
    Abingdon Oxfordshire
    What a lovely lot T.P. members are! I humbly thank you for all you comments; and for sharing your thoughts and experiences. I know that many of you are/have been in the same position as myself, wanting, even needing an end, yet dreading separation from someone who is more dear to you than life itself.
    May we all find the strength to spit in the eye of this loathsome disease, and find something to love and cling to, right to the end.
    Hugs all round.
     

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