The feeling of guilt

Discussion in 'ARCHIVE FORUM: Support discussions' started by LizC, Mar 6, 2008.

  1. LizC

    LizC Registered User

    Jul 31, 2006
    1
    Oldham
    My husband, Bernard was diagnosed with familial Alzheimer's in August 1999 at the age of 54. In Nov 2003 he was admitted to a young dementia unit at a local care home. I coped reasonably well whilst he lived at home considering the numerous brick walls, post code lottery re Aricept, constant changes of CPN's and social workers delays left right and centre. Virtually no support from the local PCT re respite care. It seems everything was thrown at us. I survived by working a couple of hours a week and auto pilot.

    Last June my husband was moved upstairs to the EMI unit owing to a variety of circumstances. It was (and still is)awful. He is obviously the youngest, stimulation was (and still is) in short supply, shortage of regular staff who do not know him and to put it bluntly the standard of care very much lower than that of the previous unit. In the space of six months there has been a marked deterioration.

    The result of all this has greatly increased my feelings of guilt. Before I blamed the PCT and social services because if he had had good day respite I would have been able to cope much better with his aggression etc. I had no feelings of guilt on putting him in hospital and subsequently the home four years ago, he was doubly incontinent, extremely aggressive(his nickname was the smiling assasin),strong, very mobile and he was losing his ability to converse. Now he has reverted to his old self and I just wish it was possible to move him out of there and back home I leave the home often in tears, knowing that despite whatever I do or say it won't change his circumstances. I feel I have let him (and myself) down despite all that I have done these past 9 years.

    I am now very wary in getting involved with any carers issues whether at Azheimer's meetings or the local council run resource centre as it makes me feel even more inadequate. Even reading the AS magazine and how others cope for longer makes me feel bad.

    I am told that I am being very hard on myself and that I did everything possible for him. 'Everything possible' would have been to keep him at home with more support for longer rather than locking him away among people almost old enough to be his parents.

    Life goes on and I am working on it. A new job has helped but that guilt won't go away.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,561
    Kent
    Hello Liz.

    Regrets, most of us have them, but in hindsight, what do they achieve? I`m sure you did your best at the time and under the circumstances and have probably forgotten just how worn down you were.

    If you are unhappy with the EMI unit, perhaps you would consider looking for somewhere better. It can do no harm. And if you can`t find anywhere better, then your guilt might be eased.

    Take care xx
     
  3. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Oh Liz,

    Hello!
    I have no experience of familial Alzheimers..but plenty of guilt!!!

    Most of us here wrestle with the guilt monster...

    I can say I admire you ..for staying strong and working at your life..that must have been hard under the circumstances..

    There'll be lots of support here for you...you're in the right place..:)

    Love Gigi x
     
  4. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Liz, an welcome to TP.

    Believe me, that guilt feeling is something many of us feel when our loved one has to go into care. But for most of us it has to hapen at some stage.

    My husband John went into care last October, and I still feel bad about it. But I know there is no possibilty that I could have managed him at home on my own.

    And realistically, you know that too, don't you?

    I don't have the problem of John being in an unsuitable home, and age isn't much of an issue, though he is the youngest in his unit. That must make it so much harder for you.

    Is there no possibility of moving your husband? I don't know if it would be feasible, but in your position I'd be looking at other possibilities. You may have already done that, of course.

    But please try to get rid of the guilt feeling. You have done your best, and no-one can do more.

    Love,
     
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #5 Margarita, Mar 6, 2008
    Last edited: Mar 6, 2008
    I found this in an Old sent e- mail in yahoo that save old sent e- mail for years . I sent it to someone in 03 . for the life of me can,t thing where I read it from , but I know it help me

    May sound like rubbish to to you , but shall post it anyway .



    inner peace can be reached only when we practice forgiveness is the vehicle for changing our perceptions and letting go of our fears condemning judgments and grievances

    We need to remind ourselves constantly that love is the only reality there is.anything we perceive that dose not mirror love is a misperception . forgiveness, then becomes the means for correcting our misperceptions it allows us to see only the love in other and ourselves and nothing else.

    though selective forgetting through taking off the tinted glasses that superimpose the fearful past upon the present, we can begin to know that the truth of love forever present and that by perceiving only love we can experience happiness. Forgiveness then becomes a process of letting go and overlooking whatever we thought other may
    have done to us, or whatever we may thing we have done to them.

    When we cherish grievances we allow our mind to be fed by fear and we become imprisoned by there distortions. when we see our only function as forgiveness and are willing to practice it consistently our minds to be forgiving we will find ourselves released and set free. Forgiveness corrects the misperception that we are separate for each other and allows us to experience a sense of unity and at-one-met with each other

    Forgiveness as defined hear, is different from the way most of us have been trained to understand it. forgiveness dose not mean assuming a position of superiority and putting up with or tolerating behavior in another person that we do not like.

    The unforgiving mind contrasted with the forgiving minds confused afraid and full of fear it is certain of the interpretation it places on its perceptions of others. it is certain of the justification of its anger and the correctness of its condemning judgment. The unforgiving mind rigidly sees THE PAST AND THE FUTIRE AS THE SAME and is resistant to change. it dose not want the future to be different from the past the unforgiving mind sees itself as innocent and other as guilty it thrives on conflict and on being right, and it sees inner peace as its enemy it perceives everything as separate.
     
  6. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    GUILT?i have an acronym of my own:
    GUIDE
    US
    INTO
    LIGHTER
    TERRITORY

    Theres a way we deal with it and a way we don't.don't ever feel guilty for the way you feel about dementia/az.theres always someone to talk to here.love elainex
     
  7. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    I think it is a natural feeling to question ourselves -

    'Could I have done it better or differently if I knew then what I know now?'

    'Is it my selfishness that has led us to this?'

    'Other people seem to have coped. Why didn't I?'

    As has been said before, we do what we do at the time we do it because we are not, if we are honest, faced with much of a choice.

    We reach the point where we know we desperately need help with our loved one's condition and allow the 'professionals' (social workers, consultant's etc) to step into the picture. In my case, I have to say that initially it was a great relief that the burden of 24/7 intensive, emotionally draining and physically demanding care of my husband had been lifted from my shoulders. I was grateful that the Consultant and Ward Staff also experienced his difficult and challenging behaviour. I was grateful that they shouldered the burden of keeping him there by telling me that it was impossible for me to cope with him by myself!

    This feeling doesn't last long, does it? Months and years of mental torture follow. We have many, many days when we come away from being with them feeling even more wracked with guilt. And still the doubts wrack us with pain: he shouldn't be here, he should be at home. I should be able to look after him and cope with all of this....... Why, oh why did this terrible thing happen to us?

    The guilt is compounded when we know that the place our loved one is now in is far from excellent and we worry so much about his care. We feel he/she is not being cared for properly and as we would want. He/she is now treated as just another dementia patient, notas an individual person to his carers, but someone whose needs must be met as part of their job. He is getting no stimulous. We worry, complain, cajole and do anything in our power to make things better for our husbands.

    The only peace I get is when I make myself realise that I did not cause any of this. The illness did! I have no right to be so hard on myself. My husband's illness causes the heartache, not my actions. I haven't stopped loving him, or wanting to care for him but this illness has forced our present situation on us both.

    You are continuing to love and care for him. You are still there, fighting his corner in the best way you can. You care about him more than anyone else in the world. What more can you ask of yourself?

    xxTinaT
     
  8. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    G GIVING
    U UNCONDITIONAL
    I INDEFFINATE
    L LOVE
    T THROUGHOUT

    C COMPASSION
    A ACKNOWLEDGE
    R RESPECT
    E EVERTHING
    R REGARDLESS



    Christine
     
  9. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Tina, thank you once again for a wonderful post. You have put into words exactly my fluctuating emotions.

    I haven't had to deal with challenging behaviour, in John's case it was total loss of balance and mobility, but I relate to everything else.

    It's so important that hospital staff tell you that you won't be able to cope. It takes the agonising decision away from you at the time, though as you say the guilt soon returns.

    We can all only do our best, and if the professionals can do it better, we have made the right decision for our loved ones.

    Love,
     
  10. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    And then...

    I'm not sure how it works where you live, but if you do want him home not because of the guilt but because you miss him...it may be possible to bring him back home...depending on if that is a real choice...
    Reason I say so, is because my Dad..(who may have been the smiling ninja in his day) spent the last 3yrs in a home because when he went in he was agressive and very hard for my mother to cope with...but now....like it sounds with your husband...he has changed back to more like his old self...and late last year she took him back out of the home and he's been living with her ever since.
    It all depends of course on what your situation is. My mum was lucky because she had a fair bit of money from Dad's super payout and the cost of the home was rather expensive anyway. She rented all the equipment needed first, like the electric hospital bed, the wheelchair, the hoist etc and initially took him out of the home for a three week trial. She didn't know if she would be able to cope again, so she only told the home she was taking him back to give him a holiday at home again, so he wouldn't lose his place (here in Australia or maybe just that particular home, they can be taken out for a maximum of 3 weeks). She found though, because he had changed she was able to cope again (mind you she also used the money she wasn't spending for his care at the home to hire some assistant carers, that come to the house and help her out every other day.
    Obviously this is not something everyone can afford and depending on the sufferer, they may be too hard to care for...
    Reason mum took him out was mainly because like you, she often left the home in tears and she missed being able to sleep beside him (these days she has her single bed up against his hospital bed so she still gets that feeling of waking up next to him. But also she took him out because the care at the home was getting worse and worse like your situation.
    So anyways, just posting this in case you didn't realise it might be possible to take him back if that is what would make you happier. In no way however should you feel guilty if your mind balks at the idea, because I am certain we all do as much as we are able to, and deep down under that guilt, our mind knows when the caring role is just too much for us to handle.

    Best of luck,
     

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