I will never forgive them!

Hey. 
I don't know how or why I have ended up on this page, writing to myself but here I am!

My mother’s treatment in hospital opened my eyes to a policy of shameful neglect.

The first shock came when I found out my mother was dying. Understandably the NHS were under pressure due to the pandemic. This neglect wasn’t due to staff shortage, it was due to inadequate staff members, consultants that I pleaded  with to look at my mum again!

To then be accused of  being an incompetent daughter that shocked the nurses as to why I admitted my mum in hospital during a pendemic. 

The reason I reached out to the hospital was due to my mum struggling to breathe.  By this point I was ignored by the gp, COPD team and district nurses. After caring for mum for many years, I no longer had equipment at home to support her differing needs. I new something was wrong, I new it was cancer. I new it was inoperable, Incurable but Mum was discharged. I was dismissed by various sectors “reasuring me” there was no active cancer; 6 weeks later we had a stage 3/4 diagnosis and fluid on the heart.  I say "WE" as that wasn't mum's diagnosis, it was ours!

I stayed by her bedside for 6 days and held her hand, she died in my arms. They took my mum, my best friend, our children's Grandma, a sister, a friend! 

Covid didn’t do this…. 

 Incompetence did , staff shortages were not evident, the hospital was no where near capacity. The nurses chose to have wheel chair races in the corridor whilst I was pressing emergency call buttons to bring  fluid to support mum's breathing apparatus.  I watched and fought for food for my mum which didn't arrive yet the staff in their tea room were making tea and toast. 

Visitors were not allowed, my sister had to throw a pot noodle through the window to feed my mum.  3 hours I waited for boiling water to add, resulting in me walking into the staff room and “taking” their boiled water. 

 

I witnessed staff “calling” my family. 

Suddenly then offering food, asking me to sit my mum up in her final hours on the “driver” which I refused. Then asking what I would like to order for breakfast for her " Incase she's still here."

I listened to them lie to my mum.  Would you like a procedure that you problably won’t come through or I can give you a needle to help you breath? They told me not to tell her, she didn't need to know, i saw the delight in mum's eyes that the "needle will help" mum stated that's all she wanted and thanked them, I refused, she was my mum, she had a right to know!! They looked at me in disgust. 

 

My mum died, in my arms, I said I wanted to keep her dignity and change her, I was not prepared to see them pin a number on her - why would this be done infront of me?

 

I am so so angry. I feel so guilty that this happened, that she suffered, that I couldn’t do anything but watch.   It hurts, it hurts so much. 

 

Nothing hurts more than living without her each day. 

 

Since the day I left that hospital - no one has reached out to us.  
 

She may have been any number to them but she's OUR NUMBER 1  

  • Dear Lewis2

    This is my first time looking at this site, as I am trying to gather info regarding my future treatment for cancer.  But reading your post has been heart breaking.

    I lost my mum 11 years ago - it was very sudden and unexpected, and I struggled greatly.  Your mum can never be replaced,  I have since gone over the many possible 'signs' that my mum was so ill (th PM showed she had a large tumour on her liver that caused a blood vessel to burst and this is what ultimately killed her)  I had been at the hospital and the dr with her only a few days previously, as her legs and stomach were swollen, she had all manner of tummy issues.  The dr said she had 'fat leg syndrome' and should wear support tights and raise her legs..... the hospital examined her back passage which was agonising for her and caused pain in er stomach and I wonder whether this caused the burst vessel.  I will never know.  But I was extremely angry then, and often am now, and also felt guilty that I should have been more forceful with the dr we saw as he wasnt one in the practice that inspired confidence to start with.

    Having now told you my 'background; I need to tell you that once you have talked and talked and cried and shared and been angry, I hope you will focus on the facts that your mother was so loved, such a wonderful mother/grandmother/friend etc and she KNEW that.  You being with her was the most loving thing you  could do, and the rason it hurts so badly is because you loved so greatly. She will remain your no 1 and like myself and my family you will talk about her very often, think about her daily, and be yjankful for such a wonderful person.  YOU are a wonderful person, as she was, and she lives on through you, your siblings and grandchildren.  

    None of this probably brings you comfort, there are no words that can take your pain, although no doubt an apology and explanation may help just a little. So,  I just send you a big hug and wish I could be there to listen to all your memories and what you went through again until you realise that the strongest and most important thing is LOVE more even than the terrible hurt and anger you are experiencing..  

    Sent with love and tears on your behalf. 

  • Hello Lewis2

    I'm so very sorry to hear about the loss of your beloved Mum. I can hear in your post how much she meant to you and how very raw and hard things are for you at the moment. Grief is a natural process but it can be devastating and it's understandable that you're feeling very angry right now. 

    I don't know if at some point it may help you to give some feedback to the hospital about the experiences that your Mum and yourself had. If this is something you want to do then get in touch with the hospital PALS team. 

    Sometimes it can help to talk things through with someone. Having the support to do that in a safe space can be incredibly valuable so I just wanted to give you the link to an organisation called Cruse. They're a charity that is able to offer bereavement support and it may be that talking things through helps you to process all the thoughts and feelings that you've shared with us in your post. 

    Sending my best wishes, 
    Jenn
    Cancer Chat moderator 

  • Im trully sorry for your loss. My friend had similar experience with her GP and 2 different hospital. Her skin and eyes were literally yellow (secondary liver cancer) and she was caughing bad (secondary lung cancer); GP dismissed her and the hospital discharged her as nothing is wrong. This was 1 year after her double masectomy from tripple negative breast cancer and family history of secondaries resulting in death. Even tough she had tripple negative breast cancer (non hormonal) they shut down her ovaries. It didnt make much sense. Why if the cancer is non hormonal? Because thats the protocol... No check ups were done after her masectomy for a year no matter how many times she asked. After her few attempts to try to get a scan or MRI or just someone to listen to her she was sceduled for a scan. She waited in the hospital for hours just to be told it was a mistake and to go home. She ended up in the hospital a few weeks later as she was getting worse. By this time she had secondaries in 3 different places (lung, liver, pancreas I think) so they sceduled another round of chemos. By the time they started the chemo she also had bone and several brain mastitis. She couldnt see in one eye as the tumor were pushing something behind her eye. They couldnt finish the chemo as they had to start radio for the brain toumors. It was a mess. She was on a waiting list for a trial drug but she has passed away the day before the trial would have had started.

    She was 36

    Her parents are still fighting with the hospital for her papers, as apparently they are not allowed to disclose sensitive personal information to the parents even if the person has passed away. They had to hire a lawyer and planning to take it further.

    Sorry for hijacking your post, I know its not about me, just wanted to say that unfortunately you are not alone with the NHS care experience. 

    I hope you find peace

  • I am so sorry. This is such a heartbreaking situation and I can understand your devastation and raw anger. I can't offer more advice than that given by Jenn. I agree about contacting PALS, if only to try to ensure that no one else goes through this. xxx

  • My mother died in hospital of ovarian cancer, 4 weeks after her diagnosis. I then went into early labor with my twins. Suffice to say, it was not an easy time for me or my husband.

     

    My mother had been going downhill for months, but was fobbed off and even offered physio for what was obviously something dire.  In her own words she "felt she was dying" but she was ignored.

     

    When she was eventually admitted it was abundantly clear that there was no hope. The nurses were vile, they really could not have been more callous. Even 13 years later I hate those women with a ferocity that surprises me.  I'm usually pretty good at seeing others points of view but the way these ladies treated my dying mother led me to believe that some nurses are attracted to the profession for power over the helpless, and not for the noble calling we always assume.

    The MacMillan nurse liaison was by far the worst.  Bearing in mind I was 7 months pregnant, at 41, with a very risky monochorionic twin pregnancy, I asked the MacMillan nurse, in what I thought was strictly between us, what to expect if I took my mother home.  Eg, would she become incontinent before she passed? I had obvious, practical reasons for asking. I wanted to be prepared and I wanted to make things as comfortable for my mother as I could.  I asked what would happen if I went into early labor, and she laughably suggested I "pop mum in a taxi to us".  This was a patient with terminal cancer, who was unable to walk, had a catheter and was occasionally delirious. 

    To my total horror, the MacMillan nurse told my mother the entire content of our discussion, leading my mother to decline to come home to me. She was upset and hurt that I would be worried about her weeing the bed etc, which was in no way at all what I had meant!

     

    My mother died a few days later. She died thinking I didn't want her. It has taken me 13 years to accept that there is nothing I can do and as I raise my own daughters all I can do is advocate for them and for myself should the worst ever happen.  People are not saints and sometimes they're in the wrong job and they should be ashamed. 

  • That's an awful thing to happen and really unfair of the nurse to do that, especially noting the long-term repercussions. I'm so sorry for you and your family. x

  • My experience of the pals team wasn't that great, read my post and it has a very similar title to yours,  and I and other members of the family did liaise with the pals team and they were very nice but very little help 

    I would describe the pals team as a road block to make sure all t Ts are crossed and Is are dotted but you concerns die with them