1. Community
  2. Chest and lungs
  3. Chronic Obstructive Pulmonary Disease

Why was I not told my mum only had hours to live?

Posted , 7 users are following.

nipper22
nipper22

Hi , my mum was diagnosed at 28 with COPD after being given penicilin for a chest infection that she reacted badly to. She lived until she was 61. She sadly passed away only a few weeks ago. I want to know why that as family was not kept informed as much as I could have been about the end stages of COPD. Christmas 2014 mum was diagnosed with puenmonia and had 15 admissions into hospital up until she passed in March of this year.....each time I was told that she was getting better and each time they sent her home I was told that she was being admitted into 'vertual hospital !'....On her last trip into hospital it was a Friday night and I left her still speaking and acting like she would be home the next day. Only to find her in ICU on my visit the Saturday wearing CPAP machine.....I asked if she was receiving pallative care and got the answer 'no'. She was then transfered to a full face mask (a bit like a fire man) again I asked if she was getting worse...again 'No'. She spoke no words for the next 3 days as the 02 was drying her so badly that she couldnt speak,eat and barely swallow.  In the early hours of the Tuesday morning she sat up and told me to get my brothers as she was dying.40 minutes later she was unresponsive. They took me to another room and explained that my mum was infact dying and they were going to remove her medication and machines. They did this and let her fight for her life. Something I would not wish on my worst enemy to have watch....4 and a half hours later she passed away in my arms. Throught out the ordeal they leave it upto the relatives to decide when modizilam is needed for agitation.....I am so cross that they didnt tell me how low her blood gases were and that she was infact hours from death. I also dont understand why it was my decision as to when to give morphine etc ...mum was unresponsive ...how was i to know?

2 likes, 12 replies

12 Replies

  • stew....art
    stew....art nipper22

    Posted

    Sorry to hear your bad news, be strong and

    Focus on the good times although that's no

    Easy when you have lost a huge love of ur

    Life. Get that happy music pumping that u

    both loved, so sorry my friend!!

  • brenda27185
    brenda27185 nipper22

    Posted

    Sorry for your loss. You did all you could do for your mom. Dealing with hospitals here in U.S. is like dealing with the govt...impossible. my mother died of congestive heart failure at 71. She also was on life support with no real prognosis. we had no control over her medications. the doctors handled that. We had to decide when to take her off life support which was impossible because they did not communicate clearly what her condition was. finally after 3 days we were told she had no activity in the brain. so we made the difficult choice to unplug her. please know that your mother knows how much you love her and that you did everything possible to help her
  • lozy22056
    lozy22056 nipper22

    Posted

    I am so sorry to hear your sad news. I have copd and only found out by accident only for me coughing blood it came back copd but 18 months before that i got told all clear so i didnt go near drs hospitals or anything if i could help it dont trust them one bit. 14 years im still fighting but now on oxygen and tell me the only pain relief is paracetomol. I have done research and everything to try and understand now i am doing rehab and i have learnt more in the past 3 weeks doing this than i have in 14 years. I know when my dad died from copd he was suduced into a coma and they told me he had an hour to live i also had no clue. I am really sorry and i think more people should speak out cause these drs just expect us to understand what there on about and really they should explain themselves. again i am sorry for your loss and im sure your mum knows youlove her and done everything you could for her.
    • nipper22
      nipper22 lozy22056

      Posted

      I saw hope she does...Ive lost my best friend xx Thankyou xx
  • archemedes
    archemedes nipper22

    Posted

    My heart goes out to you because I do really understand (from personal experience) the torment that you have gone through.

    I am not making excuses for the medical staff involved in your late mum's case, but I think that hospitals and medical care homes hope that a patient will pull through at the last minute, and they fear having to give bad news prematurely to anyone.

    As I say it is not an excuse for them, and I understand only too well what you have been put through as my late mother in law (an amazing woman) passed away in similar circumstances.

    What really confused us was the evening before she died she called all the family around her and asked us to bring her in a chinese take away.

    We laughed and joked that night, but no single member of the staff mentioned to us just how serious her condition was.

    The following day when we went to see her she was sleeping, so we all went into the corridoor for a coffe and a chat.

    My wife popped her head round the door of mum's room and I don't know why she said that mum was not moving.

    The strangest thing was that my mother in law had been soundly sleeping all the time so had therefore not moved, so how my wife could tell the difference, as I say was a mystery.

    Afterwards I asked the sister in charge why we had not been told that mum had been so very ill, and she said that it looked as though she would pull herself round.

    3 years down the line I still find it all too difficult to believe, but what can we do when we are told what we are told which in this case was nothing at all?

    So yes, it must really hurt you, and I do sincerely hope that you can one day find it in your heart to move on, however difficult it might be.

    God bless.........

    Rod

    • nipper22
      nipper22 archemedes

      Posted

      Thankyou so very much..hearing other peoples stories of the same things really does help in knowing that mum is not alone and did receive the care similar to others and not just left to fight and die.

      Take care and God bless to you too xx

      Tracie x

  • jude65855
    jude65855 nipper22

    Posted

    That is absolutely terrible, I'm so sorry your mother had to go through that and that you had to witness it.  You did all you could and the hospital staff let you down with their lack of communication.

    Personally, I hope that when I get to the stage of so many hospital admissions in such a short space of time I can find some way of dying peacefully.

     

    • nipper22
      nipper22 jude65855

      Posted

      If only I knew what I know now....I would have asked for her to be in a private room instead a room of 3 others too...all of whom made a recovery!....Mum was not bothered she had just had enough and let them do what they wanted...I hope and pray that anyone else who has this cruel and wicked disease is able to make there wishes known well before it gets too late for them...Its a tuff ordeal for the ones left behind and to witness. 

      Will keep you in my thoughts and prayers x x x x 

    • archemedes
      archemedes nipper22

      Posted

      Hello again Nipper, not that it will make any difference at this point in time, but I would just like to say that my late mother in law was in her own private room, but that in no way made any difference to the sad outcome.

      Please, whatever you do, do not start recriminating yourself for anything.

      From what I know of your heart wrenching story, your behaviour was exemplary throughout this sad episode in your life, 

    • nipper22
      nipper22 archemedes

      Posted

      Thankyou Rod....its hard not to tho. Everyone is telling me the same thing and that I should be proud of what I have had to do since...alone...

      My mum and dad were my world....now that im alone, I guess im just over analyzing things. I know my mum would be proud of what I've done....and in time I know things will become easier to accept, maybe not understand tho. Thankyou for taking the time to read my plight and be so generous and kind with your words.

      Tracie x

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.