1. cris

    cris Registered User

    Aug 23, 2006
    326
    Chelmsford
    Heartbreaking. I prefer it when Susan is angry and abusive. Not physically abusive. When she is angry I can turn-off. Swears at me, tells me how useless I am, tells me she is not doing that, does not want me looking at her,
    It goes over my head. It is the disease not Susan.
    When she sobs to me "help me please", when she sobs and has tears
    streaming down her lovely face, sobbing "please help me" I can't take it.
    cris
     
  2. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    I'm sorry Cris. You're so right - the anger is much easier to ignore.

    I had a similar moment with mum last week - I had her cradled in my arms like a baby and she cried as if her heart was breaking.

    I think it hurts so much because the anger isn't them it's the disease but the tears is a chink of the person behind the diease. I don't know if that makes sense.

    Keep your chin up honey - I'm thinking of you.
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,731
    Kent
    Dear cris, it`s the asking for help that`s so heartbreaking, with or without tears. There is no help we can give, being loving and caring is just not enough. I`m not surprised you can`t take it.

    Love xx
     
  4. cris

    cris Registered User

    Aug 23, 2006
    326
    Chelmsford
    It is perfect sense Kate. When Susan is begging me, sobbing, I can only cuddle her and say I'll do my best. It is unbearable
    cris
     
  5. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear cris, think this a morning for a group hug.
    Your post was so moving, but so spot on.
    Thinking of you,
     

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  6. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    15,990
    Toronto, Canada
    Cris,
    I feel exactly the same way as you. When my mother was angry, swearing, punching etc I could very easily handle it as it was obviously the disease. When she would smile & say "I love you" it would devastate me.
     
  7. alex

    alex Registered User

    Apr 10, 2006
    1,665
    Hi Cris

    Yes it is heartbreaking honey, because our normal reaction to someone we love who is distressed is to give them a big hug and tell them everything is going to be ok...........but we can't say that because we know its not ok....... not for them or for us.

    We want to reassure them, protect them, stop the pain and suffering..........and we can't do that either............we know what lies ahead, we can only hope they don't.

    Because we love them, we have a job to do, we have to put our pain to one side and get them through this with as little pain as possible, we sometimes feel we are failing and that hurts, and yes it is heartbreaking, but your doing your best Cris and you can't do anymore than that.

    Sending you a {{{{{{HUG}}}}}}
    Love Alex x
     
  8. Petrus

    Petrus Registered User

    Aug 7, 2007
    61
    Northumberland
    Dealing with the Future

    J. has worked as a volunteer overseas as an office administrator and Samaritan-like 24/7 telephone support with mentally ill people, including some with Alzheimer's. She has known what she faces since the first, tentative diagnosis.

    I am learning to let the verbal anger pass me by (not easy since I have a short, reactive fuse). As for many, the pleas on - Why has this happened to me/us? How can you care for me much longer at home? You won't put me into a home, will you? I am nothing now I can no longer write, read, paint or embroider; Why can I walk miles in the hills and swim for an hour and look in rude good health but I cannot dress or shower or do anything in the house or garden? etc. etc. etc. - are much, much harder to bear.

    We have our stock phrases for dealing with the frustrations and concerns - "It's not you, its that wretched Dr. Alzheimer messing up the little grey cells" is a favourite; we let the tears flow - often together; we are touching on the great taboo of a Care Home but that is like dynamite; we have long since known and written down what each of us wants (Living Will; Funeral Service directions) and talked with the appropriate people.

    These things all help; they provide a basement floor. The hell is we do not know the route we will take to the end nor the timing; we only know it will be hellish.

    The challenge is to ensure this does not stop us finding the fun in each day, each hour. Today's fun was lunch at a new (for us) restaurant. What J. did not see was the look of shock on the waitresses' face when I had to answer a simple question for her about a sauce. I must have a reputation in that restaurant as a real male chauvinist ... J. had no idea what the question meant. All part of the "richness" that is life with Alzheimer's for sufferer and carer.
     
  9. cris

    cris Registered User

    Aug 23, 2006
    326
    Chelmsford
    thanks to everyone that added their views and support. It is appreciated.
    cris
     
  10. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    that really hit it home for me , when that started to happen to my mother .
     
  11. janices666

    janices666 Registered User

    Jun 23, 2006
    19
    Kent
    Dear Cris
    I do understand, Colin went threw the same think, asking for help and saying he was scared, sobbing his heart out, and really clinging on to me and not letting me go.
    It is very heart-breaking,i know, but Colin as never been aggressive, thank goodness.
    Take care, thinking of you.
    love Janice xxx
     
  12. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Restaurants and cafes became real problems for us in Jan's later days when she was still with me.

    It started on a holiday in Crete. One evening she sat there looking at her dinner plate.

    I said "is it okay?" when she didn't start on it.

    She looked at me bleakly and said "I don't know which cutlery to use"

    These days I spoon her soft food diet into her mouth, but that first time was horrifying, because even at a late stage, one somehow doesn't realise truly how dementia afflicts all brain activities.

    Cafes were a different problem. By nature they are noisy, but normally we can focus on what someone at our table is saying, above the general babble.

    Latterly, Jan could not discriminate between noises. She would sit there, isolated from the world around her, because she could not pick out what I was saying. That is when we stopped going to cafes.

    I understand that this may be a little like the experience some people have with hearing aids. The aid magnifies ALL sound, not just that which the person wants to hear, so everything becomes a louder cacophony, and the aid actually cannot help.
     
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,731
    Kent
    This is precisely my experience with hearing aids, even digital ones, and my in life.

    Any background noise is intrusive, I don`t go to the cinema or the theatre, as I don`t hear a word, but one to one is fine.

    And this is how I understand my husband`s blank expression in even a group of three. And this is why our social life has come to an end.
     
  14. Petrus

    Petrus Registered User

    Aug 7, 2007
    61
    Northumberland
    Blankness

    The blankness that I see with J. is just about the most frightening symptom she has currently - I think the worst is when I approach and she puts up her hands as though either defending herself or pushing me away.

    There are times during each day when her face goes almost frozen and the gaze is to the horizon. This happens whenever she drops out of what is going on. It is as though the brain has reached over-load and the defence mechanism is for the brain to shut down - for a few minutes or even up to an hour or more. The longer times tend to be after 16.00 - sun-downing, I presume.

    On one occasion (we were just finishing lunch with a friend at our local pub) her whole body shut down and she collapsed (repeatedly) like a rag doll. She remained concious throughout; after the fifth collapse within less than 10 minutes her whole body went into spasm. Once we got her home she slept for 17 hours, waking just once for less than an hour

    I presume that this frozen blankness is a stage on the pathway to loss of awareness (permanent, frozen blankness) and the self-defence or pushing away is a stage on the pathway to not knowing who I am - certainly the actions and, often, the fear in the eyes, speaks of a lack of certainty about who I am.
     
  15. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    this sounds a little like my Jan's episodes when she would just collapse. Sometimes that would happen as she was sleeping - her body would just sort of slump in the bed; it was most strange. One night it happened half a dozen times.

    Doctors have reckoned since that the episodes were fits or TIAs, while I always called them faints, as that is exactly how they presented, and there was no unconsciousness except for two occasions when I thought Jan was dead.

    Blankness is difficult to figure. My Jan is now registered blind, although her eyes are organically fine. The neural connections are simply blown away and she can't focus on things, or interpret what her eyes see. I don't know whether she sees just blackness, or whiteness, or things massively out of focus.

    We can only do our best to understand what is going on; it is heartbreaking, I know.
     
  16. cris

    cris Registered User

    Aug 23, 2006
    326
    Chelmsford
    Your point raised about conversation with 3 or more, reminds me that the other week Susan went out with the Respite helper, and they walked to the local pub, but it was full of ederly people, and susan didn't want to go in. The respite help said this to me, but we could not pin-point why, and I think it was not because they were ederly but because it was full and noisey.
    cris

    apoligise to the ederly, it is not aimed at them but on the crowd and noise
     

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