Rob5 ,
I totally get what you have written. I donāt know how you and other people on here have the strength to work I really admire you all so much.
Thinking of you
Deborah x
@Sal46 and @seychelles , thank you both , I feel a bit stronger today , but like yourselves when that gut feeling gets you it really does. I sometimes say to Mum āyou never told me or prepared me of pain like this like no other , yet you can never prepare even when I cared for dying patients , I thought 
knew what they were going through , but omg I didnāt have a clue ! But now I know and cannot put into words. And those that havenāt gone through this loss and empty achy heart donāt know the depths and hell like no other ā¦.
Wish you both a peaceful day x
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Morning Rob5,
Glad your feeling stronger today. i feel alot better managed to get 4 hours sleep it really does help.
nothing prepares you for heartache. Just know your not alone and we are all here to support each other. wishing you a peaceful day too
take care Chelle x
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my old boyfriend who had lost his dad used to tell me that, āNothing prepares you.ā
Now we have both lost both sets of parents.
He was right. I remember he was so wounded losing his father.
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Hi Rob
When I read your post it reminded me of when my mum was in hospital.There was a male nurse who was amazing.He told me the same.Thatvhe looked after dying patients but it want until his dad passed approx two months ago at the time that he honestly understood what families went through.I felt I received more empathy from him than the majority of the staff who looked after my mum. He was so caring and looked after me also by finding the time to chat and ask how I was,making me a cup of tea etc.I slept on the chair in the hosp next to my mum for 3 weeks and he went over and beyond in helping me cope .It was certainly because he could relate to the situation.
Thinking of you
Deborah x
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@seychelles
Hi Deborah.
It is music to my ears to hear about the care both you and your mum received 
. I feel so passionate about palliative care that is so important to get it right at such an awful time for the loved ones!
Thank you for sharing and warm thoughts to you
Rob x
Rob5ā¦. Same hereā¦ I am an only child and lost my wonderful Mum 2 years ago to Covidā¦ some days are beyond difficult 
and I miss her more then I could ever have imaginedā¦ my parents were married for over 50 years and were amazing to both myself and my sonā¦
Reading your message and other replies made me feel supportedā¦ 
at least we have the wonderful memories and hopefully life will get easier
Hi Rob,
I actually had a very bad experience with the palliative care team at the hosp. I was referred to them and on their first visit to my mumās room in hosp they communicated info in a terrible manner.First of all 4 of them came into a very small room without any notice to myself. Two doctors and a nurse and the sister on the ward. One doc sat whilst the rest stood around her bed.The doc who sat asked my mum did she understand what was making her ill. She replied yes stating she had a bowel obstruction and they couldnāt operate bec of her age. Next question she was asked was did she know why they were fast tracking her to go home so she said no. The doc told her it was bec she was dying but she didnāt know how long she had left and no one did At that point the three others said they all didnāt know. Then they said they would leave us in peace and left. Talk about being flabbergasted. I was crying so much my mum was actually comforting me saying Deb donāt cry maybe I will have a miracle.I still feel so angry about the way in which they did this .If only they had asked me to have a quiet word with them before entering I could have explained that all her life she had told me she never wanted to know she was dying if ever the time came. I still beat myself up for not stopping the conversation .I should have. When they left the room I concentrated on telling mum she had to keep strong to get herself out of hosp and we would do everything we could possibly do to make sure she built her strength up when she got home. Bless her that was enough to help her at the time but after that I had no time for palliative care doctors. Even when mum came home and a lovely palliative care nurse came out to see me and when told the story told me I should put a complaint in. I havenāt put one in except she reported back that I felt the communication was absolute shit and disrespectful to an 89 yr old who deserved so much better. Whilst I totally understand that the truth needs to be told when necessary there should be consultation prior to find out or discuss how the patient feels or the family as they are the people who are left picking up the pieces.
We are under the Hywel Dda hospital and their last inspection report highlighted that 70% of complaints were on connection with poor communication so it beggers belief that lessons havenāt yet been learnt
I apologise for my rant because I know I am probably and hopefully in the minority that have gone through this and I am sure your team of palliative care are not like this. I just felt so let down from the team we had after expecting nothing but total empathy and understanding.
Deborah x TV
Deborah Iām so sorry about your experience and you have every right to rant !!!
There is poor care out there from doctors / nurses and it is shocking when I hear your experience . Heartless !
I hope you can take comfort from the empathy of that male nurse and community care and Iām sorry again for what you had to endure . You said you wish you stopped the conversation , but you were in shock to be able to do anything. And ranting about it is good as it doesnāt stay in our heads , I still rant a lot about a lot of things .
Thinking of you
Rob x
Aww thank you Rob.
I just had a bad experience thatās all. Not all nurses and doctors are like that . I had many operations and the care and treatments I have had have been exemplary in many different hospitals.
I will be forever trying to get over the way my mum was treated. She left school at 14yrs and worked so hard full time all her life so I just felt she deserved better at the end of her life.
Even the chaplain at the hospital told me that he had been asked to put on courses for communication for doctors which sums it up really. When i heard him saying that I think I was speechless.
Nothing will bring my lovely mum back so everything is pointless.
How are you getting on ?
I am googling everything at the mo and realise my mum was never going to survive a closed loop small intestine blockage. Never in a million years.
I realise I had to phone 999 that morning as she was so so sick. I had felt so guilty about phoning but realise I couldnāt have saved her staying at home.
Thinking of you
Deborah x
Hi Deborah. Apologies for late response. I understand how you feel as I also had guilty feelings with āonly if s and buts ā. I think this is normal response of grief. We however must not give ourselves a hard time. Our mums wouldnāt want that or think we did bad. We did the best we could have done under dreadful circumstances. Above all our mums loved us and we do too! I can hear my mum now ā donāt worry son itās the way it was meant to beā.
Yes I miss her so so much.
I wish you a very good and bright day Deborah !
Rob x
Thanks Rob,
I keep going through all the things she said to me . it was so painful at the time.
One morning she said Thank you for everything you have done for me . i sobbed telling her it was a privilige and a pleasure and not to thank me because I loved her so much. I am going over and over those words. I think it was her way of saying goodbye to me because i was on my own at the time and had just come downstairs. She knew everytime we spoke about anything to do with dying over the years i would break down and say I will deal with that when the time comes as could never talk about it. I think she knew that and just wanted to say thank you to me .
God this is so awful. It has certainly got worse for me not better and its been 2 mths.
Everyone else seems to have moved on but i cant
Hope you are feeling a bit better
Deborah x
Deborah that is so lovely 
thank you very much.
Warm thoughts to you. Our mums are still with us you know just different. A robin in the garden , her wind chime sheās always there and so is yours 
Rob x
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Hi Rob
Yes I hope my mum is still with me but on a different form.I try to imagine she can see me and is looking down on me and my family.
I believe in feathers being a sign so that helps me when I find one.
This is so tough going
How are you?
Deborah x
Hi Sal46
How are you? As you can see I canāt sleep so on here again. Still exhausted from crying and crying There is no end to it and no light at the end of the dark tunnel yet.
Reality has kicked in that I will not see my mum again and it is so raw .
I donāt know how I am going to ever get through this.
My husband of 35 yrs doesnāt know what to do to help me and my mood swings are dreadful at times.Some days I am a crying mess or angry about whatās happened or mega depressed or fed up and donāt communicate much.I switch off with conversations as quite simply I canāt be bothered to reply.This way of life is awful and I know my mum wouldnāt want this for me but I still am like this.Everythingvjustvhurts so much without her.I just want her back.
In your post you said it changed how you felt after you put your mumās ashes down Do you mind telling me more about that feeling as I am not sure what to do.
Mum always frowned about ashes being kept a long time and I think I was the same whenever we heard of people doing that However itās a different story when it happens to you and I have gone completely the opposite way with my feelings now.
Will pm you for chats about our mums
Deborah x
Thinking of you Deborah. It is the hardest journey ever - grief is a lonely place despite being around so many people. Our mums are unreplaceable.
Pain like no other - itās so early for you and raw.
Iām hoping that you have a peaceful night - I know the gasping feeling - be kind to yourself , thinking f you Rob x
Hi Rob,
Thanks for your reply.Cant sleep again and have failed agai to do all the things I said I would do so tom I am setting a big target to get them done.Had some good news though I rang the water board to tell them of mumās bereavement and I donāt have to pay any bills for six months Thank goodness I didnāt pay the bill
Am having really bad days at the moment.Cant see anything improving Just such sadness and pain like you describe it really is like no otherDeborahx
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hang on. I lost my mother five years ago and only this year, do I feel better. so hang on because it will be a long ride but the thing about time is that is does pass ā¦ that is all it does.
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