1. alex

    alex Registered User

    Apr 10, 2006
    My partner took ill 5 months ago and was on a life support machine for 12 weeks, it was very traumatic as every day they told us he was not going to make it.
    I spent 6 weeks staying night and day in the waiting room of icu, as i was frightened to leave incase he died when i was not there.
    He made it through all sorts of problems including multiple organ failure only to have two strokes, he is now brain damaged from being on life support for so long and has vascular dementia.
    He is still in hospital and i'm told he will need 24 hour nursing care and its unlikely that he will come home.
    I'm so devestated!!!!!
    People think i am so strong and that i handle it so well, the truth is that i cry myself to sleep every night.
    95% of the time he does not know who i am. I don't know what to do, i feel so guilty.

  2. Michael E

    Michael E Registered User

    Apr 14, 2005
    Ronda Spain
    Alex hi,

    welcome to the forum - guilt is a wonderful thing -- for some reason almost all of us are wracked with it from time to time. I feel so guilty I do not do enough. guilty that people think I do more than I do. guilty that..... goes on and on...

    Don't know why it happens because all of us who have 'sick' loved ones - partners must be caring a bit simply because we bother to post on this forum... Cannot help you Alex except to say 'Guilt' seems to go with the territory..

    I was awake all last night because my wife did not know who I was - she had decided I was an impersonator in the house to steal her money - When I told her my name she just got angry and said I was a liar - cheat - Tried stark reasoning - to no avail - Actually in the end I didn't mind - just wanted to get a bit of sleep ---- All this business of your partner/lover whatever not knowing who you are goes with the territory and is the way it is... It does not worry me now too much - I know it is her poor mind in a dreadful and frightening muddle...

    Good luck with it - Lot of nice people here who are going through or have been through all this and can empathise if nothing else

  3. jarnee

    jarnee Registered User

    Mar 18, 2006
    Oh Alex, what a sad story. I am so sorry to hear it, but I'm glad you've found TP. I find that not only does it help me tremendously, but when I can post something for someone else, that helps me feel useful too.

    Begone, you guilt monster !!!!....we all have one. But like all bullies, we try to ignore them because if he can see he's getting to you he will just get worse. We can't ignore him altogether, which is why he never goes away, but we learn to handle him......MOST of the time !!!

    I can say little to help you through this except you are not alone and you are stronger than you think. Giving yourself time to bawl your eyes out is no bad thing !! (We've all done that too ;) )

    Anyway, just wanted you to know that you are now amongst people who will be there for you during you low and your highs ( yes there will be some). Take every scrap of hope and drop of happiness or good thing that happens and treasure it.

    Post again soon

  4. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    Hello Alex

    As with the previous answers, I have guilt lurking all the time.

    My Mum at 74 is 6 years into AD with an element of vascular dementia, she is in an EMI home and although I know she is in the best possible place, for her, I feel guilty she is not with me, but for all sorts of reasons, it is not possible.

    Mum, like your partner only knows me a fraction of the time, but she is still my Mum and I am still her daughter, nothing will ever change that, nor will I ever stop loving her or looking out for her.

    I suppose the difference is that it has taken a few years to come to the place Mum and I are now, but you have been thrown in the deep end, it must be a very frightening situation for both of you.

    You will always have your partners best interests at heart, it is sad that he won't be able to come home, but he needs to be wherever he is safe and his needs are met.

    You can still be a big part of his life by making sure he is well looked after and as comfortable as possible. Hang on to that 5% of the time that he knows you and be thankful that he will, for the most part, be unaware of the nightmare world you and he are in.

    AD is sometimes harder for the loved ones of the sufferer to cope with than the sufferer themselves.

    Let us know what happens, all good wishes to you.

  5. sophia

    sophia Registered User

    Apr 20, 2006
    Hi and welcome Alex

    Well done for posting and getting into this! I am new too. My mum has AD, diagnosed a year ago, quite suddenly. I know i was in shock for some time. I wanted to say that if you want to have your partner home , and of course it may not be practical , you may be able to. I have a social work background and have done a lot of hospital and hospice social work and counselling ( for my sins!) . Has there been a Continuing Care assessment? That looks at the needs of the person and what care is needed, and whether health or Social Services are responsible. If health the care is all free, if Social Services it is means tested. It's a very complex system ( and in my opinion one that isn't working very well practically) and about which a lot of professionals let alone patients and carers/ family , are confused!) but knowing your rights is useful. The Dept of Health website details the main policy. Basically though, whether your partner's care is a health or Social Services responsibility if you would like to have the person at home, it is rare that this is not possible. It may cost the relevant authority more than a care home and that is often why it is put to family that there is no choice. Often the people saying this are not entirely sure of the legislation supporting you. Reasons why it could be impossible are things like if the person is prone to stopping breathing and needs constant monitoring by a qualified nurse , but there aren't many reasons. Of course there may other barriers and you may not feel that in your own situation , given all your circumstances that it is the right decision for your partner to be at home. Or you may want to try it and see how it goes. There's a great deal to consider. I'd suggest you see the social worker to talk about any assessment , funding and choices of all care places. I know other Talking Point (TP)members will be able to talk from their own experience too of placing people they care about in Homes versus their being at home. There is a lot of experience here to draw on. I hope this is useful Alex and I'm sure that TP will be a great support for you too x
  6. Margarita

    Margarita Registered User

    Feb 17, 2006
    #6 Margarita, Apr 30, 2006
    Last edited: Apr 30, 2006
    The guilt that monster tell it to go away it’s a waste of energy , a good cry is a relief of tension & sadness & is good for you

    Yes I can
    with you like Michael said & give you a ((((Big hug)))).
  7. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    HI hello: I feel for you so much. 'I cry myself to sleep' registers with me! I still do even though my husband is by my side. It is very tough and there are so many people here on TP who feel and experience the same as you. Please try to get some comfort from it - you are not alone. It is hard to know what else to say but try try and try again to take time for yourself - you are special because you are part of this group (TP) My thoughts are with you. Best wishes BeckyJan
  8. DickG

    DickG Registered User

    Feb 26, 2006
    Hi Alex

    Not much to add to what has already been said except to say that my thoughts are with you.


  9. alex

    alex Registered User

    Apr 10, 2006
    Thank you, i thought i was on my own as most of our friends seem to be in short supply once they knew he could not remember who they are, they seemed to stop visiting, and don't even ask how he is now, its as if he has died and they don't like to ask! Its a hard place to be.
  10. alex

    alex Registered User

    Apr 10, 2006
    Thank you for your kind message, i do treasure every moment, good or bad, as i don't know if he will still be there when i go in to visit every day, as he still has problems from being so ill.

    Doctors say that if he has Heart Attack/Stroke etc, they will not try to resuscitate, that brings it home as to how important time is!

    When friends come to visit i can see the look of horror on their faces, yet when i look at him i feel nothing but pride and admiration for him, that he made it through so much.

    Kind regards
  11. alex

    alex Registered User

    Apr 10, 2006
    In at the deep end is my middle name

    Thanks for your message kathleen

    The guilt is because i would not let them switch the life support off.

    I was so sure he would make it through. Look what i've done to him! He knew what was going to happen (He is a doctor!) and he asked me to turn it off, but stupid, selfish cow that i am, i could not face switching off and watching him suffocate, i just could'nt do it!!!
    No doubt i'm being made to pay! thats life!

    Sorry to hear about your mum, i suppose i'm lucky that i have not have so long to suffer, i could not imagine what state i would be in if this went on for 6 years.

    Kind regards
  12. alex

    alex Registered User

    Apr 10, 2006
    Thanks for the information, i'm looking into things at the moment.
    I have my own business so i'm lucky in the sense that i can take time off or work around things. I'm looking at providing a qualified nurse, the hospital have said i will need to finance that, but i feel its important to make what time he has left as comfortable as possible and i know he would rather be at home.

    Kind regards
  13. alex

    alex Registered User

    Apr 10, 2006
    Thank you for your kind message,
    I think my eyes are attached to my bladder at the moment!!!

    The days are not so bad, as i keep very busy with my business and visit the hospital twice a day (Traffic & parking is a nightmare!) but the nights are frightening, they seem to last forever!

    Kind regards
  14. dmc

    dmc Registered User

    Mar 13, 2006
    hello alex,

    nearly two years ago my mum had a heart attack she was "gone" for around 15 mins and as a result suffered brain damage, she hung by a thread for a few days in ITU but miraculously pulled through she was home after two weeks, she did suffer short term memory loss but hey, we could cope with that, last september we could see she was going downhill, and to cut a long story short was diagnosed with a very progresive form of dementia in feb, they gave her 12 months but it could be as soon as september!
    it sounds terrible but i wish they hadnt brought her back to suffer as she is now and she had gone then! they have asked us, that if she suffers another heart attack do we want her resuscitated my view and my brother is just let her go, but my dad who has the ultimate choice finds he cannot make that descision, his feeling is that he would be killing her himself,
    try not and feel guilty(easier said than done i know) you made the choice you thought was best out of love.
    my thoughts are with you
    take care
  15. alex

    alex Registered User

    Apr 10, 2006
    Thank you BeckyJan

    It's so good to know there are people out there who are kind enough and care enough to reply! I really felt so alone.

    Many thanks
  16. alex

    alex Registered User

    Apr 10, 2006
    Hi Dick

    Thanks for your message, its nice to know. I was choked when i realised that there are such nice people out there, i thought they were a rare breed! obviously i was very wrong!!

    Many thanks
  17. connie

    connie Registered User

    Mar 7, 2004
    Alex, only just picked up your original message...........

    Rare breed indeed, TP people are among the salt of the earth. We are all in this together. Thinking of you, love
  18. sophia

    sophia Registered User

    Apr 20, 2006
    challenge that!

    I'm looking at providing a qualified nurse, the hospital have said i will need to finance that

    Hi Alex, if your partner's needs are assessed and a qualified nurse is needed,and he meets the criteria for Continuing Care, you would not need to pay as health care has to be free at the point of delivery. I would urge you to summon some energy to get that clarified first. If it's a Social Services and not a health responsibility, it is means teased, but you only finance the lot if you have significant savings generally. Usually people pay a contribution and the care package is provided to meet the need. It is your partner's financial situation that gets taken into account rather than yours. It sounds as if this may possibly have changed regarding income if not savings. Also you can claim Attendance Allowance on behalf of your partner, is anyone advising you or helping you with that? Sorry. that's lots of blurb, but I'm keen you get what services you are entitled to! I hope you are kind of OK. I can only imagine what a shock all this is for you, and what a maze it must all seem. I think you are doing brilliantly x
  19. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
  20. alex

    alex Registered User

    Apr 10, 2006
    #20 alex, May 2, 2006
    Last edited: May 2, 2006
    Thanks for your message, i'm looking into things at the moment but its not easy.
    As things stand at the moment, he can't do anything for himself, he has to be fed, washed etc, he can't walk and its unlikely that he ever will again. He can't move his arms, head and although he can talk, most of the time he won't!
    The hospital are saying that the NHS are unlikely to provide the kind of care he will need at home as any movement (in or out of bed ) needs to have at least two people and a hoist, he needs injections administered every few hours etc, etc..,
    Kind regards

    P.S. I also forgot to mention that one of the strokes affected his eyesight leaving him blind in one eye and partially sighted in the other, its difficult to tell how much he can see, as to assess this, it needs his participation and thats not easy as sometimes he does not know the difference between yes and no.

    As you can see, the level of care that he will need will be quite extensive, vascular dementia is only one of the many problems, yet it seems to be the hardest to deal with!

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