MOVING ON ! SLIDING BACK

Hi Mel. It really would help if doctors not only practised medicine but a bit of humility as well. Yes, the NHS is under pressure but if doctors admitted more that they are human and possibly fallible it would save unnecessary complications, suffering and even deaths. Sorry for the soapbox moment. Hope you are well and today is good - a bit wet and chilly here for a long walk, will see. Alan

Hi Alan , yes today is a relaxed day , I used to go to church regualary but have not been in a while , glad you went and it was ok , I think having a few words with Helen is just fine and if it helps then so be it . Just catching up on some tv …have a good week Dx

Hi Mel , a friend of mine went through the same , went to dr with back pain sent away with pain killers one day it was so bad got taken to a an e and it was cancer and to late to do anything at her age …very unjust indeed . I’m sorry for your loss and hope we all find some peace Dee

It was a locum doctor my Mum saw the first time, didn’t even record her visit on her file. When she saw her own doctor a few months later the system moved very quickly for her and her doctor was very annoyed by the way she had been treated.

In all fairness to them the practice were good and very compassionate last year.

Wish I could say my day had gone well but hasn’t. Finding I am doing what others have mentioned and not wanting to go upstairs to bed. Lying on the sofa watching rubbish TV and only just got to bed now at 1.50am. And I have to get up for work in 5 hours.

Just catching up on this conversation, and I identify with so much that has been said. I lost my husband after a short but very traumatic illness during which mistakes were made that probably didn’t affect the ultimate outcome (in hindsight it seems like the cards were stacked against him and the stroke that ultimately killed him would have happened anyway). Nevertheless, in my thoughts I focus a lot on those mistakes and on everything that happened during that terrible time, replaying them in my head and thinking things like “If only I had made more of a fuss, advocated for him better, he would still be here.” In the weeks immediately after his death, I kept blaming myself for what happened to him, and every once in a while that thought still rises from the depths to haunt me. I’m now writing a letter to the hospital that initially admitted him to complain about the execrable nursing care he received there, as well as other inexcusable aspects of his treatment. It won’t bring him back, but it will help to get things off my mind (even though those thoughts will never leave me).

Hi, if it is traumatic at the end it stays with you, and I know I should have handled it better for Helen, my wife, at the end - denial does not help. Nor did it help that the afternoon before Helen died the GP failed to turn up - it was his afternoon off ! Have now (too late) changed GPs.
I hope you get a proper investigation and apology from the hospital that is the least you deserve.
I keep getting flashbacks and they are still very painful but I am feeling less at their mercy - not because I care less but perhaps because I can see them more in some sort of context. If your recurring memories get to interfere with your daily life then perhaps some counselling might help (Priscilla will have details) or perhaps some medication from your GP. Luckily I haven’t needed to see my GP and I ended my counselling after 2 sessions as it was making me too introspective, but whatever helps you, go for it.
Take care
Alan

Hi Ewm9,

Totally get that ‘haunted’ feeling by reliving events. I did try to make a fuss but to be honest I thought I was in a suspense movie. I told A&E doctor, A&E nurse, some guy with scrubs at X-ray, the radiologist. So so frightening, here we were in a busy hospital and I simply couldn’t get help.

Like your husband though by then it was probably too late. Mum drifted into a comatose state as a result of a very severe brain stem stroke. I was asked 3 days later to let staff withdraw all sustenance as Mum would never recover and her organs were starting to fail. 2 days after that I had gone home for a shower and change leaving my sister-in-law to sit with Mum. Upon my return Mum had a drip in. My sister in law stated that Mum had moved her arm and the consultant believed this was sign of life. I was so frustrated, I barely left Mums side, she had been having little involuntary movements/jerks from time to time since she was admitted. Had I just let them starve my Mum these past few days and what about her existing conditions with no med controls?? Several hours after, the consultant came to me to ask if he could again withdraw all sustenance as he was now convinced there was no sign of life. I kinda lost it with him. I told him about the little movements that had been happening all along, told him I thought it was unfair and cruel to delay what was happening to my Mum by injecting more life into her and to come to me for the second time to make the same huge decision that had been made days earlier.

Mum lasted for 8 days, she had had no meds, food or water since the night before she had fallen and I just don’t know how she lasted so long. It was horrifying to watch what this did to her body and I was so wishing her to go in the end because I was so worried that despite what we were being told that she was in fact aware and that she was suffering.

I haven’t complained, my brothers, our spouses and our children went through all this with me and we just wanted to get Mum home and do best we could then by her. I just hope the consultant takes heed from the wonderful junior doctors and nursing staff on his ward and stops to think if he is ever in a similar situation with a patient and their family again. Clinical decision should not be taken so ‘clinically’.

Sorry, for blurting all this detail out, just felt the need tonight

Pepper, your experience is harrowing. Such a level of distress for your Mum, you and your family is beyond comprehension. Times were when Hospitals were safe havens and you could be sure consultants were doing the right thing at the right time. I don’t think that way since the NHS also failed my Husband, I wished I had questioned every single move that was made. The more we become aware of each others stories the more it seems these aren’t isolated incidences. This can’t be right can it. What strikes me is what a kind and selfless individual you must be to have gone through this level of emotional pain and be ready to help others on here with your words of kindness, encouragement and support. I benefitted from your advice through a private message recently.
Take care Pepper.

Hi Pepper

You have shown such kindness to others seeing what you went through yourself. I am so sorry that you had such a terrible time. You feel so helpless when this sort of thing happens i think.

We had to make a decision about not to resuscitate Mum when she was ill and should she have a heart attack. Of course Mum had to give her consent as well and I was warned that this had been badly handled in another case so requested her own doctor came to deal with the paperwork. What did the practice do but send a completely unknown doctor to us and it really upset Mum badly. What do you say to someone who asks you are they going to die after the visit?

Mel

Hi Tina19, thank you so much for your input.

I was a bit ashamed of myself after I hit the button on this last night. I have always been a very resilient person. Sucked it up, licked my wounds and moved on but this knocked the stuffing out of me.

I don’t actually blame anyone regardless of their actions or lack of action. The stroke was the most severe and few ever recovered from this type of stroke. I was and still do feel very embittered however and I suppose last night I had a moment.

Hope life is being good for you today…x

Hi Mel,

Thank you too for your input.

I don’t fully understand all aspects with this Do Not Resuscitate policy. Mum and I discussed this briefly when the news broke and I know she was frightened about certain aspects of that.

I was sorry to read of what happened with your Mum and how she had been let down by in diagnosis. It just doesn’t help the situation at all and I suppose like me you too must have those negative feeling resurface.

I just want to say to you and to all participating in this thread and beyond that I read all of your posts. I might not contribute but I do empathise and I do so feel encouraged when I see how people overcome or are having a good ‘normal’ experience or day.

Take care Mel and keep posting.

Alan/Dee, all the best for you too…x

Hi to everyone that’s posted under MOVING ON SLIDING BACK! I am so sorry we are all here because of grief and loss issues BUT I’m also pleased and thankfull we all have a place where we can support one another. My dad went to a rehabilitation home at one point and two of the nurses treated him very Nablus and to cut a long storey short ended up sacked, I was so cross and could of sued but I spent a few months helping the home put things in place for clients and relatives so that it doesn’t happen to someone else…trouble is glad I did BUT I’m still mad and can’t let go …my dad was a lovely kind gentleman and deserved so much better.today is a middling day for me …how are you all today? Much love Dx

That’s a kind gesture, kinder than I would be I must say. I can see why you are still mad however. I suffer immensely from the If only/what if syndrome. Like you, my husband too was a gentleman who deserved better. A chance of a different outcome from a different course of action taken haunts me daily. It’s said we need to accept things but if acceptance was that simple psychiatrists would be unnecessary. Tears today I have to admit. Regards to all.

Hi

I think we all have moments and days when we feel embittered with what has happened. I certainly was last night and still am tonight. I think for me it is because I am going to the hospice tomorrow evening who provided the at home care Mum received. They are having a small service and I will have the chance to see Mum’s name in their book of rememberance. It feels like yet another very final thing for me which I feel I have to attend. Part of the process of trying to accept how my life has changed.

Please everyone think of me tomorrow evening and will me on. I dread going and know I will break down and cry terribly.

Mel
Xx

Good luck tomorrow Mel. You have to do this, I was invited to a memorial service in the local church to put a Star with Mum’s name on the Christmas tree. I didn’t go, felt it was such a sentimental time as Mum’s birthday was on Christmas day and I found December was when I really felt Mum’s absence. I do regret this but it is what it is. The old saying “best to regret the things you do than those you don’t do” comes to mind.

You will be relieved to do this, be strong, it’s one of the last things you can do for your Mum, we’ll all be thinking of you…xx

Hello Mel, a big hug from me for tomorrow. Your Mum would appreciate you being there and I bet you won’t be the only one in floods of tears, you may even be able to share them together. Will be thinking of you.
Alan

Hi Pepper and Alan

Thank you for your good wishes. Not the most successful evening. Public transport let me down badly and i was 15 minutes late so missed hearing my Mum’s name read out and having the chance to light a candle for her. I was and am so upset and sat and cried. Only person there who did and felt an idiot for doing so as the others there sat and stared at me. Just wanted to come straight home but felt it would be too rude to walk out. A volunteer sat with me though and was kind.

Having an early night and hope will sleep.
Mel.

Hi Mel
Sorry it didn’t go well for you but you know that your mum would have been really glad that you went - you did your bit even though “life” intervened.

And those people staring at you might not have been being censorious. They might have felt they should be doing something but not knowing how - something I’m prone too. I went to an alternative Christmas church service (called Blue Christmas for all those who had the blues and were not up to the jollity) and just myself and a lady in front of me could not stop crying through the service, we too attracted looks, but I thought afterwards that they felt even more awkward than we did. I too nearly left (or ran out as I prefer to put it) but toughed it out - I’d rather people saw that I cared than pretended not to.
Hope you are having a much better day, and, if allowed, another hug.
Alan

Oh Mel, what can I say, so disappointed for you. This was supposed to be a reflective and positive event for you with like minded people. Who would have thought Public transport could have had such an effect on the outcome.

You should be especially good to yourself today and try not to overthink it, these things do happen. It was just a big step for you.

Hope you had a good night …x