Guilt all these years on.

Discussion in 'After dementia — dealing with loss' started by Wops, Dec 2, 2018.

  1. Wops

    Wops New member

    Dec 2, 2018
    2
    Hi, I don't really know what I expect from this post but here goes. My lovely dad passed away 10 years ago after we could no longer manage at home with his deteriorating mental health and the effect this had on his behaviours. He was only in the nursing home for a few months when he fell and fractured his femur following which his physical health rapidly declined. I have lived with this guilt for 10 years and today I have been an emotional wreck after my friend has announced that her dad who is in physical ill health will be cared for at home as they couldn't put him in a home. The guilt has become unbearable. If I could turn back time I would give up my own job as a nurse to care for him full time at home. I feel as though I must be a terrible person and I let my lovely dad down when he needed me most. I'm interested to know if others feel this way too. Thanks for listening/reading.
     
  2. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    7,889
    leicester
    Hello @Wops welcome to tp I hope the forum can help you ground ‘the guilt’ monster, who haunts almost all carers..
    With regards to your friend, just because they say their relative will be cared for at home doesn’t unfortunately mean that they will be able to fulfill that promise.
    Circumstances overtake most of us when it is impossible for one person to care full time for another person.
    I hope others will post to help reassure you that you shouldn’t beat yourself up over the past.
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    67,264
    Kent
    Time can`t be turned back @Wops.

    It's so easy to say what we wish we`d done, but at the time residential care was possibly the only alternative to either a crisis or carer breakdown.

    There are people on Talking Point who have managed to care at home till the end of the life of their person with dementia and others who have had to give in and make the most painful decision for residential care.

    Even though this is only your first post and I do not know you, I`ll bet you were a devoted daughter who just couldn`t manage full time care indefinitely, nurse or not. I have read of nurses here on Talking Point who were so good at managing care for others but found caring for someone they really loved a totally different ball game.

    Please don`t waste the rest of your life with regrets. I`m sure it is the last thing your dad would have wanted.
     
  4. Rob_E

    Rob_E Registered User

    Feb 1, 2015
    118
    Male
    Liverpool
    From what you say, the decision that you made 10 years ago was absolutely the right one and would not have been taken easily. The situation would have been so difficult and demanding that something had to change.

    I've been through some difficult times myself and sometimes there will seem to be people in a similar position who can make you feel, intentionally or not, that they are doing better than you. The fact is that their circumstances will almost certainly be different from yours in some way, no two situations are the same.

    I hope you feel better about things soon, we can't control everything that happens.
     
  5. marionq

    marionq Registered User

    Apr 24, 2013
    4,964
    Female
    Scotland
    My husband attends two separate daycare centres and the staff in each are first class. Several of them have told me they have a parent with dementia and how although they deal with it daily in their job they find it stressful and heartbreaking in their own family.

    Absolutely no one deserves criticism for finding it too much to handle within their own home. I have come through what I hope is the worst of it and my husband is a calmer shadow of his former self. It has taken all of my life for the past six years and now entering the seventh I know that I have to stay in good health to be able to continue,
     
  6. canary

    canary Registered User

    Feb 25, 2014
    7,577
    Female
    South coast
    My mum went into a care home and it was absolutely the right decision. She wanted me to give up my job, leave my husband and go and look after her, but I could not do that. Her care home was wonderful with her and looked after her in a way that I could not have done. She too fell and fractured her femur which progressed her dementia to final stages and she passed away - it is all too common.

    Many people say that they will look after their relative at home till the end and that they will never "put them in a home", but very few manage it. Dementia will take everything that you have and then some more and often people reach breaking point and their relative has to move into a care home anyway.

    My OH is now in cognitive decline. My heart is saying that I will look after him come what may, but my head knows that there may well come a time when I cant.
     
  7. B72

    B72 Registered User

    Jul 21, 2018
    107
    A clergyman said to me, when my father was very ill; “Don’t take him into your home. You will end up praying for him to die. You won’t make him happy by making your family unhappy. “ He was so right.

    We have told our children that if the time comes when we need that level of care, they must put us in a Care Home.

    My OH and I have discussed this with regards to each of us, and we are both agreed, at the point when it becomes really, really hard, we both want the other to take the Care Home option. (And we love each other very much.)

    Stop feeling guilty, you did the right thing.
     
  8. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    3,695
    Kent
    I know I made the right decision at the right time for my dad for NH care and in consideration of my family circumstances but 18 months after dad's death and having had a few admissions to hospital during his last year caused by falls which may well have happened due to illness decline had I still been looking after him in his home.... I sometimes have the same guilt monster thoughts as you and probably others on TP. I too in the earlier days said the same as your friend to my friends but nothing prepared me for how challenging dad's care became...good for your friend if they manage that BUT take it with a pinch of salt...her parent may not present the same challenges as your dad etc. I think too it is a post caring mindset that creeps in where we may look through rose tinted glasses as time passes that we question or illogically try to justify further our decision made with kindness and care and for totally the right reasons. Other than mum and dad saying neither wanted a care home...neither could have anticipated mum's sudden death or dad's subsequent rapid decline in the following year...and I regret not having been able to discuss the probability that with alzheimers they would need 24/7 expert care eventually more than I, one daughter however willing and loving, could sustain long term. I and my OH have already had this conversation with each other and importantly from my experience our children. Let us all kick that guilt monster off our shoulders...we did our very best and what was needed at the time.
     
  9. Beate

    Beate Registered User

    May 21, 2014
    10,682
    Female
    London
    Every situation is different. You didn't put him in a home, dementia did. What someone else says they will do isn't your concern. There might come a time when it's too much for your friend too. Everyone has good intentions, and no one is keen on a care home, but often it's the best decision. My OH had to go into a nursing home when he lost his mobility and couldn't do anything for himself anymore. He died less than two weeks later. It wasn't my fault, and he is free of any pain now. Your Dad is too. :)

    Just as an aside, if you haven't moved on from this after ten years, you might benefit from some counselling or CBT?
     
  10. Wops

    Wops New member

    Dec 2, 2018
    2
    Thank you for your replies, they have been reassuring and helped me to rationalise my irrational and unhelpful thoughts. I think I will always carry some guilt with me which in some ways is reassuring as it means I care. Please keep up your fantastic support .
     
  11. hilaryd

    hilaryd Registered User

    May 28, 2017
    51
    Please don't feel guilty. Everyone is different, and every situation is different. You do what YOU can do - no matter what anyone else can do or thinks they can do - and whatever seems best at the time. Everyone is learning on their feet, and everyone has different needs and responsibilities to juggle. When you can't do any more yourself, you find the best alternative at the time. With hindsight you might make a different decision, but at the time you don't have that hindsight. And whatever the choice they make, everyone probably feels some guilt somewhere along the way. In any case, 'putting someone in a home' is a term loaded with emotional baggage - it doesn't mean locking them away in a Dickensian institution, it (hopefully) means finding them a place - a HOME - where they're safe and comfortable, and where someone else with the appropriate skills sorts out their practical needs so that you have the time and strength to care for their emotional ones. You didn't let him down - you did fine.
     
  12. 100 miles

    100 miles Registered User

    Apr 16, 2015
    109
    Kick the guilt monster into the gutter where it belongs.

    You did the best you could. It isn't helpful to compare your situation (from a long time ago so the true horrors of 24 hr care have hopefully faded from your mind) with your friend's. Sometimes I think people with physical problems must be easier to care for than our poor old dementia sufferers. It is so hard to care for someone who can't follow instructions, who may be relatively physically fit or might not be physically strong but they have forgotten they can't walk easily so try to carry on as normal.

    I don't think my mother would have been too impressed if I had given up work to look after her. She would expect me to be at work earning a living and not cluttering up her place drinking all her coffee and bossing her around.

    Best wishes

    100 miles
     

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