Grief compounded by obsessive guilt

Discussion in 'After dementia — dealing with loss' started by SiobhanM, Feb 10, 2015.

  1. SiobhanM

    SiobhanM Registered User

    Feb 10, 2015
    2
    #1 SiobhanM, Feb 10, 2015
    Last edited: Feb 10, 2015
    Hi all. I hope i can share my story here. My mother had Alzheimers, she passed away last year. My father was unable to cope with caring for her anymore and he placed her in a care home. Overall the home wasnt bad although we had nothing to compare it with in terms of their experience with people with Alzheimers. Well not only did she not settle but within 3 months she was dead. She walked into the home albeit it with help. its such a long story to go into. she basically stopped eating. me and my dad never let a day pass without one of us being there with her. i had done my best to help my dad with her when i could but found it hard at times juggling that and 4 young kids. she was hospitalised because they wanted to rule out anything physical. personally i had learned a lot in caring for her and i think they were very inexperienced with people like her. the 'behaviour' as they called it really bothered them. again its so long to go into. the hospital were great and i really thought i could 'save' her. i spent every moment there which some would say is wonderful but all of you know how someone with alzheimers would be, she was like a scared child. at one stage they had to put a catheter in and she screamed and clung to me begging me to make them stop - i cried and cried after that episode.
    i just feel so guilty now. i helped my dad with all the paperwork for the home, i even brought her there because i was good at keeping her calm and explaining things to her, reassuring her. i feel guilty i didnt take her to my home (i did consider it and my husband would have been fine about it), i feel guilty i didnt tell my dad to take her out of the home, i feel guilty that i didnt spend more time with her when she wasnt very advanced. i feel so guilty for going on holidays when she went into the home, it was our first in over 3 years. you name it i feel guilty. i know on one hand that i did a lot, there wasnt one appointment i didnt take her to, i stayed weekends (not a lot) to let my dad go away but he eventually didnt want to bother, every weekend we would bring them to my house for lunch or take her out. i dealt with all her medical stuff and applications for support etc, i ran out of the house anytime there was a crisis and went to my parents home to help .but i will admit there were times i would avoid going to see her. i argued with my dad about stuff and i found it very depressing to be there and resentful of other siblings doing very little if anything and the stress of juggling the kids and my parents used to be too much sometimes. i used to feel very old. sorry if that is self pitying. my mum was 'dying' for nearly 2 weeks and i barely left her side. i stroked her hair and talked and talked to her and when she would struggle for breath near the end i would tell her how well she was doing. maybe it hurts more , the more you are involved. it was hard but there were nice times and i suppose why i feel so awful is that toward the end she was quite calm but my dad was burnt out. him and my mum had a great marriage and never ran out of things to say to each other. he was so good to her and it was awful that in the end (and dont judge him) i think he would have sent her anywhere that would have taken her, there was a lot of verbal abuse and agression from her at times and he , despite me constantly saying it wasnt her, would always take it so personally. me and the kids had lovely times with her, she adored them and my husband, he was the most unbelieveable son in law.
    i know it makes no sense on one hand, there are people i know who's parents have dementia and they leave everything up to others and i wonder how they can remove themselves from it. one person told me that when she visits her parent she doesnt stay long even though she wouldnt have seen them for over a month because she cant cope with the behaviour and yet i am tortured with guilt and can only look at what i didnt do rather than what i did.
    im sorry for such a long post but i feel i cant talk to anyone about this. my siblings dont talk about her really. and i suppose i feel if they had have mucked in we would have been able to keep her at home for longer.
    thanks for reading - if you are all not asleep :) i just dont know what to do.
    i bring her flowers because most weeks i used to buy her flowers , a nice bouquet if i was flush and a simple inexpensive bunch of carnations if i wasnt. when i walk into the supermarkets now and see the flower stalls i have to turn away. sorry again for going on and on.
     
  2. canary

    canary Registered User

    Feb 25, 2014
    10,803
    Female
    South coast
    (((((hugs)))))) Siobhan
    Someone on here said that often its the people who do the most who feel the most guilt :rolleyes:
    You have absolutely nothing to reproach yourself over. You did everything you could for your mum and have been a wonderful daughter. It sounds like your mum was coming near to the end of her dementia journey when she went into the CH and would have needed all the support there. I know we like to think that we could have coped at home, but mostly its not true and your dad was almost burnt out from looking after her.
    So what you did was what was best for her - and dont forget that. You spent time with her over and above what most people would do. I cannot think of any way you could have done more.
    Please be gentle with yourself.
     
  3. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    526
    British Isles
    Siobhan - please don't feel guilty because you could not "save" your dear Mum from what dementia did to her. Sadly, we all know this is impossible - she would have continued to deteriorate with or without the care home. You were a wonderful support to your parents, and I hope you and your Dad are able to comfort each other in your grief.

    You gave her the great gift of four lovely grandchildren - please try to focus on the joy this gave her.

    I'm sure there will be some other posts soon with suggestions on how you can try to stamp on your unfounded guilt. I do hope that sharing your story here will help you to see that you were a wonderful daughter and that your Mum would be very proud of the way you helped your parents. Please be kinder to yourself.
     
  4. chezzie

    chezzie Registered User

    Jul 25, 2012
    12
    Siobhan the love you have your mother shines out; please don't doubt the depth of the care you gave her in such difficult times. Guilt is such a negative force but sadly one that all of us who care for our loved ones feel so very much. I wish you well and hope that you find solace to heal your pain.
     
  5. loza

    loza Registered User

    Jul 4, 2013
    22
    Because you cared

    It always seems to be those of us that have put in the most to help our parents through the trauma of Dementia and the coping of dad left at home who bear the most guilt, I think its because we gave them so much time and support when they needed it and did not have the heart or the strength to keep the situation at arms length like the rest of the siblings, dont look on it as guilt you were a massive part of their lives at a time when they needed it, I feel guilty at mum going into care....was there a safe solution for her to stay at home, no, at the time she realised this and put herself into care, was it easier for me that she made that decision on her own..no, I still look at what else could have been done. You have to like the rest try and pick up life and start living without all the stress, its not easy i know and by positive talking I am hoping to see a way thro, good luck hun xx
     
  6. Dragonfly10

    Dragonfly10 Registered User

    Jan 27, 2015
    24
    I am going through feelings much the same as you . My Dad died on the 25th January this year. He went into a care home for respite care the week before as he got a UTI and stopped being able to walk. He had even forgot how to get out of bed and it just got too much for my Mum, who wasn't in the best of health. He was getting very aggressive and she cried most days, when he used to swear at her. I can honestly say until then I had never heard my Dad swear once. He underwent a complete personality change.
    The home was meant to specialise in Dementia, but I don't think they could cope with the last stages. We could see he was getting worse but they just said he had given up. They said he had got a upset stomach and didn't tell us to stay away. Everybody who visited him went down with Norovirus at varying times that week. I went down with it on the very day he died.
    He got admitted to hospital after exactly 1 week in the home. The Doctors there more or less said he had been neglected and said he should have been brought in much sooner. One also said if he got better we should move him to a different care home.
    He died on the Sunday morning.
    I just feel we took him there to be cared for and they let him die.
    Looking back I feel like we should have noticed more, but whenever we raised concerns they always had an answer for it and they gave the impression they genuinely cared about the residents.
    The SW is looking into it and has referred it to the CQC, if we can stop it happening to somebody else it will make me feel a bit better.
    I think it is probably normal to feel like that and from what you say you did all you could for her and more . Take care x
     
  7. dotty12

    dotty12 Registered User

    Jan 23, 2013
    19
    I think you do feel emotions of guilt if you were the carer. I guess it is the fact that we cared so much and were giving of ourselves that makes us always strive to do the utmost best for our own standards... Resulting in guilt! What a useless emotion though. It is now 6 months since mum died and although I'm beginning to accept she's gone, the feelings of guilt are with me 24/7. On waking, in dreams there is always this 'you could have done more' I know that in reality this is ridiculous:confused: Someone posted here recently about imagining your best friend was going through all this right now, what would you say to her? This does help keep things in perspective. I'm sending you a big hug, I think when its all over and our loved one has gone we forget how exhausted we were, but we still gave. Look after yourself. X
     
  8. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,499
    Female
    Near Southampton
    Just like grief, I don't think guilt ever really goes away.
    Mine hasn't but I'm hoping you get used to living with it and it recedes so that it is not always in the forefront of your mind and heart.
    Give yourself time and things will seem more positive as the months move on.
    I think it's natural to feel we could have done more, said more and understood more but in rational moments we probably know that we did the best we could at the time.
    Hindsight may very well be a wonderful thing but it can also be unkind and undermining too. x
     
  9. WIFE

    WIFE Registered User

    May 23, 2014
    856
    WEST SUSSEX
    I totally agree with Saffie - it is so easy to give into guilt - my dear Mother always said she thought it was wasted emotion - instead of grief be practical. If you cannot change what has been try not to dwell too deeply. I expect we all have moments or things from the past we would like to change if we possibly could but I am sure we all tried our hardest to make things as right as possible for our loved and departed ones.

    I wish you love and strength to come through this saddest of times WIFE
     
  10. sunray

    sunray Registered User

    Sep 21, 2008
    1,429
    Female
    East Coast of Australia
    I think the more you do the more you think there was extra you could have done. None of us are able to "save" our loved ones. I put my husband into care because he couldn't stand up and I didn't have room for a lifter and every day when I saw him neat and tidy in a wheelchair, even though I knew it took three aides to get him that way I felt I should have been able to manage at home.

    When guilt arises look at what it is saying then say: "No, I did the best I knew how at the time". I think that is the only answer. If you had been at the care home 24 hours a day you could not have stopped what happened from happening. It is the dementia, it is the illness, none of it rests on what we did or did not do.

    This too will pass.
     
  11. SiobhanM

    SiobhanM Registered User

    Feb 10, 2015
    2
    thank you all for kind responses
     
  12. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,953
    Because most of us lead relatively fortunate lives I think we know very little about grief and how all encompassing it is when it hits.

    One of the many pressures causing you suffering at present is perhaps an instinctive awareness of how powerless you actually were to change anything the way you wanted it to change.

    I think our culture makes us expect to have some control and some ability to help - it comes as an overwhelming shock when all we can do is to endure and to try to support others as they endure too.
     
  13. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    You more than gave support when it was needed. You went more than the extra mile. Be kind to yourself in your time of grief.

    xxTinaT
     

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