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13 posts since

2 Apr 2021

I have so many regrets about my mu last few weeks. 
when mum came out of hospital 5 weeks ago she was put on 4mg of dextamethazone for 2 weeks. She was great, although she was bedbound ahe was of life, enjoying her food and got her sense of humour back. 
The Macmillan nurse told us to reduce to 2mg after the 2 weeks. When I googled what the steroids did I questioned this as I just wondered we couldn’t keep her quality of life for a bit longer, I knew that if my mu appetite and energy levels dropped she would go down hill. I sled 2 other nurses and they both said we could keep her on them a while longer or even just reduce dosage to 3mg. Unfortunately the original nurse convinced both my siblings that reducing and weeding off was the right thing to do. Her energy levels and appetite slowly reduced and then 1 week after coming off the steroids completely my mum was so weak and passed away.

im completely wracked with guilt that I should have put my foot down and kept my mum on the steroids. I’m convinced she would still be with us. 
has anyone got any similar experiences of this please? My mu only been gone 5 days and I’m really struggling. 

26 posts since

6 Jan 2021

My mum was in a hospice for three weeks before she passed on the 14 March.  She went in there for symptom control and we did not expect her to die so soon.  She was only stage 3 but had heart proble.  The first week in the hospice she did really well and she was meant to be coming home, then she deteriorated rapidly.  Apparently the hospice were giving her sedatives because she was anxious about coming home.  While on the sedatives she slept all day and did not eat or drink, after a week like this she started dying and died over a week.  I took her to the hospice in the first place to get her help, and feel like it is my fault she died.  If I had not taken her there, she would not have got sedatives and would have remembered to eat and drink and might still be with us.  I never knew they gave sedation in ho – more fool me.

 

13 posts since

2 Apr 2021

Hi

So sorry to hear about your mum.

If it gives you any comfort – my mum was cared for at home and we were advised to give sedatives in the last few days too.  My mum didn’t eat or drink then either.  She was so anxious we thought it was the right thing to do.  Do you think this guilt we are carrying is part of the grieving process?  How are you feeling? I always knew losing a parent would be hard but this pain is unbearable. x

26 posts since

6 Jan 2021

Hi

Yes guilt is part of grieving, although knowing that, does not make it any easier to feel.  I guess my mum was too weak to eat and eventually drink, if she had been strong enough then even sedatives would have not ped her eating and drinking.  I just thought right up to the end that she would bounce back as she had done previously when she was ill.  Maybe it was just her time.

It is three weeks since my mum passed, and I still feel just as sad.  I hope it does get easier.  I just keep remembering her in the last few weeks, where she was so different to how she had been all her life.  It made me sad so see her so weak and confused.   I guess time will heal and these memories will fade and I hope to just remember the good times.  
I hope you will feel better soon as well.

Liz

13 posts since

2 Apr 2021

Its so hard isnt it? 

All we can do is trust the professionals in this instance, but i now wish i had challenged it more. 

What really upsets me is that we trusted our Macmillan nurse, so when we were near the end we begged her to come out to review my mum and look at her as we knew she was changing and needed more pain relief and we couldnt get ayone to come.  It haunts me that she was in so much pain at the end when it maybe could have been prevented.  It will always live with me. 

Its only 1 week since my mum passed so i know its early days but im just lost without her.  

Thanks for reaching out.  I really hope you feel better soon xxxxx

9 posts since

6 Apr 2021

Hi Kath

i was reading through the foru as a guest and have joined so I can share my story and hopey ease your guilt. 
 

my father was also on Dex and we were told by the doctors 4mg for 2 weeks then 2mg for another 2 then nothing. When the day came to reduce his dosage my dad had walked into the garden on a sunny day a few weeks ago and sat with a cup of tea. The nurse decided to continue the 4mg of steroids. This was continued up until 2 days before his death (5 weeks in total). His appetite waned fairly quickly after that first additional prescription we saw a jump for 2 days then a steady decline until he ped eating completely 2 weeks later and died a week after that. The dex while it kept him alive longer prolonged something that his body had given up on. With it without the dex he would not have lived longer just been less able to fight it. Please don’t feel guilty, the cancer killed your mum and not the lack of dex, I promise. 
 

I had the same fight as you but my nurse had my interests at heart and not just dads which made a difference but she agreed for me so I could feel I did everything I could for him. Looking back though I don’t believe it made a positive difference for him.

 

hopey my story helps you through this awful period. I know I’m at a horrible point where the funeral is over and my grief is worse and I feel so truly terrible and guilty for wishing he was still with me in any f. This is natural to feel this way but please know you shouldn’t feel bad about this.

 

c x

26 posts since

6 Jan 2021

Hi Kath

We had a week of going backwards and forwards at the hospice, at one point my mum was coming home because they said she was stable.  I look back now and realise she was far from stable and her dying process had started.  Everyday the doctors and nurses at the hospice changed, so there was no continuity and every doctor said something different every day.For this reason we did not realise my mum was dying until quite late.  I too am haunted by thoughts that she might have suffered unnecesarily.  I guess dying like the rest of life does not always go as planned.  We must be kinder to ourselves.  The fact that we are questioning everything is a sign of how much we loved our mu.

13 posts since

2 Apr 2021

So so sorry to hear about your dad, its such a horrific time and nothing can ever prepare us for this can it?

Thanks for replying to me i really appreciate it.  Your story really does make me feel better.  I also spoke to the nurse today and she explained all of her decisions to me and i now do belive that we did everything we could for mum.  My anger has now turned towards this terrifying disease. 

I know all our feelings of grief are nal but it doesnt make it any better does it?  I’m sending you loads of love on this awful journey and thanks again xxxxx

 

13 posts since

2 Apr 2021

You’re right, all of this is because we loved our mu so much and thats it hurts so much. 

I know they say every person is different but like you, we didnt know my mum was dying either and i wish it could have been more peaceful if we had known.  

xxxx

26 posts since

6 Jan 2021

Well I am very sure that your mum would have been incredibly proud of you and the care you gave her.  You did your very best – remember you are not an expert in palliative care, so don’t beat yourself up.  It was not your fault that you were let down by macmillan and the others.  Maybe you are taking the blame for their failings.  
It is the same for me, I have never had this experience before, so I did not know what was going on.  I trusted the palliative doctors but they just confused the situation more.  Maybe if we had got the care we wanted from them we would not be feeling guilty.

It makes me sad that for the last four months of my mum’s life, she was not the mum I used to know.  Ever since she got her diagnosis she gave up hope and got withdrawn, she did not open up about how she was feeling.  She lost interest in the family and everything around her.  So I feel I lost my mum when she got her diagnosis four months ago – there were so many questions I wanted to ask her before she passed but she was so withdrawn she was no longer able to communicate.  I will never work out if it was the cancer that caused her behaviour or .

Regrets


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