I was shocked that there was no information or support in the hospital regarding end of life; what to expect, how to deal with it, someone to talk to about what was going on. Nothing.
The Nurses were very kind but incredibly busy. The Doctors conspicuous by their absence. You don’t feel like you can bother them as they are all rushed off their feet. So you stay with your loved one in a side room, watching and waiting for the inevitable. Nothing can prepare you for that.
If the passing is peaceful, it’s a blessing. If it isn’t, the images, sounds, smells stay in your head and play over and over like a stuck record.
When it’s over and you have to leave for the last time. A leaflet is shoved into your hand about what to do when someone dies, along with the bag of your loved one’s belongings and you are totally and utterly alone.
The hospital supposedly had a bereavement service, but it wasn’t advertised and I never saw anyone from it. If they can’t support relatives in the last hours of a loved one’s life, then what exactly are they there for?
Death is an everyday occurrence to the staff on the wards and business as usual. To me it was a traumatic event that will haunt me for the rest of my life.
I can definitely relate to that. I look back on my mums passing and there are so many things I would change. Stuff that I didn’t know at the time and I couldn’t think straight so made decisions that were maybe wrong. I suppose my mum died peacefully although still not pleasant it’s not like the films. I’ll never get over it or forget it. The whole thing was traumatic. And I get flashbacks every day. The nurses were lovely though. But I have no idea what meds they gave her towards the end. I think she was on a syringe driver with morphine. I remember reading mums medical notes just to try and figure out what was going on as were getting very limited information. No one really explaining anything in much details. Oh how I wish I had asked more questions. But at the time my world was imploding and I was all over the place mentally. My dad was the same.
Hi lost66,
I agree with you and it’s awful.
When we arrived at kings college hospital where my mum had been transferred from kent with a severe brain bleed we were told she would due imminently in a crowded room, with 5 members of the public including a blind man with his dog, a mum and her child who was suicidal and a man who was being sectioned under the mental health act.
Mum was moved to the critical care unit to die in a room with 6 other critically ill people receiving end of life care with numerous relatives sitting judge feet from my mum.
I couldn’t bear it. Then she passed and we were haven her overnight bag.we then went to the dark park where we were charged 25 pounds for overstating the maximum 8 hours even though we had been given permission to stay as long as we needed. It took me 4 months to fight with the hospital to get our car park charges refunded. Out of principle than financial need.
The whole experience was nothing less than horrendous.
Cheryl x
Sorry…loads of spelling mistakes.
Die not due
Just not judge
Ong…car park not dark park.
I’m not posting again today
Cheryl. Lol.
I totally agree. And prior to reading your post was a little nervous to express my feelings. My mum was fine and went in for a routine procedure. What happened happened. But because she was just on a “normal”. Ward we had to explain to people that. No she could not eat. She had a stroke in nhs care. No she could not drink. She had had a stroke. No she could not tell you she had soiled herself. She had had a stroke. We were not told that she was end of life. The death rattle scared us. We asked for palliative care but were told they would not be called out over the weekend. Luckily mum had us with her. We refused to leave. My heart breaks for anyone left there alone xx
Yes, one must fight a loved ones corner in hospital. This was something I regret not doing, but they were so busy and understaffed. I presumed all would work out well, but it turned into a horrifying nightmare. There was so much that went wrong that my brain can’t go there.
Hi
I am so very sorry to be reaching out to you over such a sad event
I am totally baffled as to what occurred in the hospital. I was told by staff. I was interfering ?? I was told by staff to leave mums side whilst they rolled her then paralysed body around to change her. I was told that inserting a catheter may give her an infection. She was dying an infection as the last of our worries. Her dignity meant everything. At one point they were asking us ( while they were moving her ) why she wasn’t listening to them ?? She had had a stroke during a routine procedure. I asked them for a pillow so my grown up son could sleep on the floor next to her bed. Their answer was no. Nothing was explained nothing. Different responses from different staff. And then after 48 hours a certain doctor realised mum had not had her meds for 48 hours. After we had fought for them. I am angry because I a grieving. I know that. But my anger boils within me
I asked the ward Sister,do you get used to losing a patient and she said never.Each patient is an individual and as they worked on a surgical assessment ward,a lot of patients are there for at least 2 weeks they build up a relationship with patients.They loved Rob.He was always making them laugh.They sat with me for an hour after he died,just talking about him and they more or less had our history.I was given a really good information pack,telling me everything I would need to know.They were brilliant.
I have said it before on other threads, why don’t staff speak and more importantly listen to their patients nearest, for 48 hours I asked as per the posters could it be sepsis, no I was told just a bad infection, I had to ask them to insert a catheter as he wasn’t passing urine only dribbles, which they eventually did he went into septic shock and died of kidney failure. It took me 10 months to complain about his care, as a retired nurse I never thought I would complain about the NHS and I am finding the whole process distressing but I owe it to my husband and myself, I saw the sepsis markers why didn’t they, yes he was on IV antibiotics but after 12 hours of not responding to them, and detiorating they still didn’t take him to ICU even though I begged them to, this didn’t happen till he went into septic shock. It will be 12 months on the 18th and I am constantly reliving those last days take care
Jan x
They asked if I wanted a post Mortem, but I said no as it would not bring her back. I will be asking to see her Medical notes at one point.
Thank you.
You have brought back some horrific memories for me also. In my case though, I was a lucky one as I didn’t lose Brian at the time but the experience of his illness was awful and did cause me to have a sort of breakdown I’m sure.
Brian had seen a GP but was still very ill with stomach pains so I took it on myself to rush him into A&E. He was taken away and I was told to go home although I had no idea what was wrong. I stupidly thought he would be coming home the next day however when I rang the hospital I was told that he was going into surgery as an emergency. I rushed to the hospital but he had gone to theatre. I waited around for hours and wasn’t even informed when he had returned to the ward. I asked the sister what was wrong with him and she told me that she couldn’t tell me anything as she had no proof I was his wife, she then went to Brian who was still pretty groggy, leaned over him and shouted. “Do you know this woman and do you want her to know what’s wrong” I was so embarrassed as everyone could hear her. Brian of course confirmed I was his wife and I asked to see the surgeon so that I could find out what was going on as this sister had no idea. Three years later I again had to rush Brian to A&E but this time I didn’t leave his side and when they decided to rush him to theatre at 7.30p.m. I was told I couldn’t stay at the hospital as visiting time was over. I refused to leave and hid myself in a store room and confided my whereabouts to one nurse and hoped she wouldn’t tell anyone. I was told four hours later that Brian was in ITU on a life support but I had to wait two hours before I could see him and still no idea what exactly was wrong. It was awful seeing him like this, with all those machines keeping him alive. I had to fight for every bit of information on both occasions. When Brian came out of ICU he was in a room of his own but when moved onto a ward he had a dementia patient next to him who screamed and shouted all day and night. And although he wasn’t well enough he decided he was coming home and I got a call to tell me to come and fetch him. I took over his care from then. When his final days came there was no way he was going into hospital or the hospice he was staying at home with me.
There should be admin staff trained to help relatives who are going through this trauma. I am a strong person but knew that once I demanded to know things I was not liked and a friend of mine who was a nurse told me that they made relatives life a misery as they didn’t like them interfering… I thought things had improved over the years, obviously not. I wrote all my experiences down and can hardly believe it happened when I read it back. I intended to make a complaint but didn’t have the strength at that time. My heart goes out to you all.
Pat xxx
Your experience sounds so familiar, it took me 36 hours to talk to a doctor, I kept asking nurses to see a doctor band they said we can let you know anything you need about his care, when I started asking for the results of his blood test and if his urea was normal amongst other things, a doctor suddenly appeared, but the first thing he said to me was IV not met your husband before, but things did start happening then he ordered a catheter inserted and asked someone from renal to come to him, but shortly after that he was in septic shock. As an ex nurse I was shocked by the lack of basic care I saw, nurse comes from the Latin to nurture and I saw very little of that, while I was there I asked to see his fluid chart and with a tut the nurse said I will get someone to find it for you, I never did see it, so unfortunately these things are constantly on my mind. A month before this my son was in the same hospital for 2 weeks having a gall bladder operation and his care couldn’t have been more different it was exemplary, it makes me wonder if it is an age thing even though my husband was only 69
Take care Jan
I was called in to the hospital at 10pm on a Sunday night and I was terrified that something had happened to my husband.His Doctor just wanted a chat with me about his diagnosis and treatment.Why couldn’t they have said that on the phone instead of frightening me?They don’t seem to understand the effect all this has on family
Oh daffy
Such conditions are simply atrocious and should not be allowed. Unfortunately at the moment the flash backs are all too often…I know nothing will change the outcome.
I just hope that in time the night horrors will diminish.
Love Justine
Hi LynT
You words are so touching.
I was wondering if anyone at all would know where to reach out for grief counselling. I feel like I am going mad.
With Love Justine
Justine
Sue ryder do online counselling. There is a link on this site.
Cheryl x
Justine, Grief is enough sometimes to drive one mad. It is totally over-whelming and desperately sad.
I’m only 9 weeks into the loss of my Mum. I going to wait for any counselling.