No-one told me my mum was dying!

Discussion in 'ARCHIVE FORUM: Support discussions' started by HelenB, Jul 15, 2005.

  1. HelenB

    HelenB Registered User

    May 29, 2004
    Sorry, but just want to get this off my chest and try to reconcile my guilt.

    My mum has been in an EMI home for nearly 7 years and was in the final stages of Alzheimer's. Since the home changed managers a few years ago, the organisation and efficiency of the care provision has reduced and I have, at times, had cause to complain. Everytime my complaints have been dealt with, the manager has just blamed one of the members of staff and threatened not to employ them again.

    This week my mum died. She had taken a turn for the worse on Friday afternoon and the GP was called. The home did not inform me. The GP said that her chest infection (which was being treated with antibiotics) had worsened seriously and that the next of kin should be informed. The home did not inform me. Her condition gradually deteriorated over the course of the weekend. The home did not inform me. When she was checked on Monday morning, she was near to death. The home called out an ambulance. The home did not inform me. My mum died at 6.15am on Monday morning. The home did not inform me.

    I was finally contacted at 8.15am just as I was leaving for work - by the nurse in charge - not the manager. All I can remember is him telling me repeatedly to 'compose myself' as I broke down on the phone.

    Since Monday, the manager has telephoned me to say that she had asked the nurse in charge to contact me on Friday just as she was leaving the home. When asked why she did not call me, she said that she expected her staff to follow her instructions. She is now planning to investigate the matter further and discipline the staff member. She refused to accept responsiblity for the course of events.

    I am so angry about this. I was at home for most of the weekend. Our telephone has an answerphone. If they had been unable to contact me, they could have contacted my brother, who also has an answerphone.

    I am pleased my mother is finally at peace - free from the grips of this most terrible disease. But I did so want to be there to hold her hand as she slipped away - or at least a day or so before.

    Should I pursue this? Any advice appreciated.
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hello Helen

    I'm so sorry both that you have lost your Mum, and that it has happened under such dire circumstances.

    I really can't understand the way the home has treated you. My wife's home phones me - day or night - if Jan even gets a scratch.

    First of all, you should feel no guilt - how could you?

    Regarding taking things further with the home, well, I'd not want them to do this to anyone else, so it would be good to have it highlighted.

    Just how is the issue.

    Main thing is that you have nothing to lose in doing something. Usually we may be less likely to make a complaint if our loved one is still resident, because we fear that they might suffer as a result. No longer the case for you.

    I'd contact the Alzheimer's Society Help Line and seek their advice.

    If really mad about it I'd also contact the press and my MP and bring it all to light.

    Oh yes, by the way, the reason a manager is a manager, of course, and is paid as such - is that they ARE responsible for the actions of whatever they are managing.

    Best wishes, and please let us know how you get on.

    Meanwhile, look after yourself!
  3. HelenB

    HelenB Registered User

    May 29, 2004
    Thank you so much for your thoughts and kind words. Your advice is greatly appreciated. I shall definitely contact the helpline and pursue it from there. It's nice to know there's someone who understands.

  4. JustMandy

    JustMandy Registered User

    Jun 28, 2003
    South coast, UK
    Dear Helen,

    I'm so sorry that you've lost your mum. :(

    You have no reason to feel guilty! You know you'd have been there for your mum if only you'd been given the chance. You had the "choice" taken away from you so that was completely out of your control.

    If I were you I'd concentrate on the (fully justified) anger and frustration that you're feeling - sometimes I think anger is a far more constructive emotion than guilt or sorrow.

    Good luck with the AS helpline - I'm sure they'll be able to offer you useful advice. If all else fails you could contact the local Social Services for the area your mum's home is in and ask for the contact details for the local regulatory/inspection office for care homes and contact them.

    If you have any religious leanings, or I think it applies equally if you don't, there's a wonderful prayer that's actually a pretty good summary of how to deal with life and all it throws at us:

    God, Grant me the serenity to accept the things I cannot change,
    the courage to change the things I can,
    and the wisdom to know the difference.

    You're in my thoughts,

  5. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    Dear Helen

    Yes please do pursue it. My Mum died recently and although I was always pleased with the home felt they were less than open with me about her deteriorating condition. They always informed me if they had to call the doctor and when they moved her downstairs for better observation but they never actually told me they thought she was near the end. I had to ask all the questions myself and tell them what kind of end of life care I wanted for Mum and agreed this myself with the GP. In the end I decided the time was right to spend as much time as I could with her and 'phone relatives, they did not suggest this to me, It was almost as thought they were frightened of bringing the issue of death up. She was also transfered to hospital in the middle of the night against my wishes I wanted her to pass away in the home undisturbed. I have since found out that this was because of communication problems between nurse with a very distinct South African accent and NHS Direct. I have sent all my correspondance to the home suggesting that they use it for training puposes!

    best wishes Geraldine
  6. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    Dear Helen

    My sympathies, my mum also died recently, I know how hard it is.

    I think you have every right to pursue this, they have taken a precious moment in your life away from you that can never be replaced.

    Take Brucie's advice and if I were you I would contact the press it's the only way you will be taken seriously and warn others and also stop this home doing this again. No one can hurt your mum now, you don't have to worry about the home any longer,they have wounded you deeply and you should make them aware of their cruel and unprofessional handling of your situation. They will have to answer to someone if you highlight this, they are banking on your grief making you not take action.

    Thinking of you.
  7. Jude

    Jude Registered User

    Dear Helen,

    I was totally horrified to read your post. Do get some help immediately. I'm so sorry for you and your family.

    Very best wishes,

  8. daughter

    daughter Registered User

    Mar 16, 2005
    Hello Helen,

    I just wanted to add my condolences. Your experiences with the home made me so angry.

    Thinking of you,
  9. HelenB

    HelenB Registered User

    May 29, 2004
    Many thanks to Mandy, Geraldine, Magic, Jude and Hazel for all your kind words of support and the lovely prayer. You've all made me feel so much better.

    I will try to focus on my anger rather than my guilt at this point and will let you know the outcome of any action I take.

    It's wonderful not to feel so alone at a time like this.

    Thank you all again
  10. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    Nr Mold
    I too am very sorry to hear of the loss of your mother. The other members have given you good advice.

    I just wanted to say others do care and are thinking of you and your family at this sad time.

  11. ElaineMaul

    ElaineMaul Registered User

    Jan 29, 2005
    Dear Helen,
    I am so very sorry to hear of the loss of your mother and in such circumstances. I certainly can't add to the advice that the others have given but I wanted to add to the comments that the others have said that you have no reason to feel guilty.

    If you have the strength to pursue this, at least you might ensure that this doesn't happen to someone else ....... but do please take care of yourself; allow yourself time to grieve.

    Thinking of you and your family,
  12. Shakey1961a

    Shakey1961a Registered User

    Nov 7, 2004
    So sorry to hear of your mother's death Helen. I urge you to pursue it most vigourously. This is just incompetence!

    First of all kick up a stink with the Care standards commission
    Put in a formal complaint against the home. Go and see you MP as well. Anyone you can think of. For far too long home get away with bad management.

    This is a totally unacceptable situation you found yourself in. Make merry hell for the home. I would and I am going to after my problems.
  13. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    Helen you've absolutely nothing to feel guilty about. Please let that notion get right out of your head, the only people at fault here is the home, they are the ONLY people who should be feeling guilt, and plenty of it.

    You take care of yourself, you will be feeling a wealth of emotions now (my main one straight after mum's death was terrible anger) everyone is different but be prepared from swinging through all kinds of emotions at once. And remember it's perfectly normal to feel like this.

    A big Hug to you.
  14. Jude

    Jude Registered User

    Dear Shakey,

    Many thanks for the tip about the Care Standards Commission. Helen won't be the only one contacting them...

  15. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Hi Helen, so sorry to hear about the death of your Mum and the way the home handled things. It is not good enough. I would put my concerns in writing to the senior management and also to the GP who was called. My own Mum died this time last year, I wrote a complaint to PALS and they took it up with the hospital. I also sent a copy of all that happened to the Alzheimers society in case they wanted to include any of it in a list of the problems we carers face. Thinking of you. Love She. XX
  16. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    Do it!!

    Dear Helen,
    What a dreadful time you've had: bereavement AND complete lack of care and compassion from the very people who were employed to look after your Mum. Words fail me, and I can't imagine what I would want to do in your situation, other than to definitely, definitely take action. I can't believe that anyone should feel that this attitude and behaviour is remotely acceptable. For your own sake, and your Mum's you must demand answers - nobody will be able to turn the clock back for you, and your Mum is at peace now, but for the sake of eventually being able to work through this you must get it out of your system and confront the Manager (obviously in writing and not in person, as I am sure you are far too vulnerable at the moment for that). Make your anger work for you.

    My sympathies, my thoughts and my prayers are with you!
    Very best wishes.
  17. Kriss

    Kriss Registered User

    May 20, 2004
    Hello Helen

    your post made me very angry and very sad and also very frightened. Mum and I were very "lucky" to have been with Dad when he passed and I guess I have been taking it for granted that when the time comes I will have sufficient warning to be able to travel up to see my Aunt so I can be with her. I suppose none of us can be sure of this but in your case it seems downright criminal that you were not informed.

    I hope you can find the strength to fight - it may help you focus in some way - but see how things go and how you feel. Do not risk destroying yourself if it all becomes too much. You'll have lots of support and encouragement from everyone here but sometimes you need someone at your side as well. You have so much to deal with at this sad time.

    Take care
  18. HelenB

    HelenB Registered User

    May 29, 2004
    THANK YOU ALL SO MUCH. I've been overwhelmed by all your responses and words of encouragement. I would definitely not want anyone else to experience this total lack of support from their parent's/spouse's home at a time of bereavement and will do my best to pursue this.

    Kind regards to you all
  19. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Dear Helen, please make sure that you also think of yourself a bit here. To complain and kick up does cause a lot of stress, I know because I have been there. Give yourself time to grieve as well as to right the wrongs. How you do it is down to you, but you have friends here willing to listen, support and understand your loss and the anger you feel. What ever you do, don't go blaming yourself, we all tend to beat ourselves with the guilt stick, but it really does no good. Lets face it, if we didn't give a toss, why would we be posting on here? It's because we do care, thats why that guilt stick can hurt so much. Thinking of you, love and hugs, She. XX
  20. brambled

    brambled Registered User

    me too

    Dad was moved to a new nursing home in 2001. His old care home couldnt manage his increasing immobility.

    The complaints authority has been revamped since then, hasnt it?

    But the procedure was horrible. You complained to the nursing home. they lied . you complained to the local authority who went to the nursing submitted proof that it couldnt have happened that way because you were demonstrably 200 miles away at the time in question.nursing changed their signed statement and so on. nobody ever compared stories. .

    very very distressing. All the best with your complaint


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