I know that left in the cold feeling, I contacted Cruze and after a long chat with someone she made me sound very welcome, a few moments later she said sorry she she couldn't help because I was in the wrong county, I'm not but somebody as drawn an arbitrary line and stuffed me and presumably my whole village in the next county. Now I have to do it all again and see if they'll help me but really I'm not in their county so they may say the same.
Now days you have to be a 'member' and you must not be near the edge.
Thank you all for your soothing words, support and suggestions. It really helps.This forum is the only place to find help and comfort from truly understanding people.
It seems, the support that's available for bereaved people, depends on the location we live :(
I am sorry, you are having a bad experience too. I hope, you will have some joy for the second time.
Thank you for your reply and the suggestions.
I have checked the Maggie Centre, but it's not available in my area. It seems, they do groups and even workshops. Sounds good as this is what I am looking for. To meet people in same situation for coffee and chat and walking in nature. It seems difficult to find something.
i am so sorry for what you are going through. I too lost my husband at the end of july and although I’m having counselling through work, I feel that my counsellor has glossed over the traumatic facts of my husband’s passing.
My husbands tongue was so swollen, he couldn’t close his mouth and his breathing was very laboured for at least 2 weeks before he died. My husband died at home but it happened quicker than we expected, so as you can imagine, it was a very traumatic time for me. I rang the hospital about 11:30pm and told them he had deteriorated rapidly but they said there were no beds. I had to ring 999 and I was told to perform CPR, which I did and he was gasping for air like a dying fish. I will never forget the trauma of that moment, hearing his ribs crack, watching his face as he was struggling to breathe and his eyes bulge. It was all truly horrific and the memory of his death will never leave my mind.
But everyday since, I allow myself these thoughts and I cry but I also try to remember the lovely times we had and to visualise happy time’s - sometimes it is hard - but I hope that it will help me cope. Certainly the counselling sssions have not helped with this, so I have had to find a way myself to cope with those images. I don’t think they’ll ever leave me but I hope they will soften over time.
Good luck on your journey. It is a journey I sincerely wish none of us were sadly on.
That sounds a pretty brutal way to lose a loved one, yes there are moments that you will never forget and images that you can never unsee and I think you have experienced the worst of them. They shouldn't have instructed you to perform CPR, I was fortunate that my husband died in the hospice but that he also was advised by his nurses that in his condition a DNR was the best choice because the likelihood of surviving cardiac or respiratory arrest while at home are small and that you will not be in a very good state if you do survive.
You are obviously made of some really stern stuff to be able to write this.
Thanks for your kind message. I’m so glad that your husband’s passing was more peaceful.
It truly was the most horrendous and scary situation and I honestly think that i’ve dealt with it by pushing it to the back of my mind for the time being, otherwise I just couldn’t carry on.
Unfortunately, my husband’s positivity worked against him. Although he’d had a terminal diagnosis, the local hospice took him off their books as he’d responded well to the palliative chemo and never followed up on him afterwards. He thought that this was great news as he saw it as a positive milestone to beating his cancer. When he died, he’d been having immunotherapy treatment and we really thought it would work or at least give him longer with us. During all our visits to the hospital, no one ever asked us about DNR, so when the paramedics arrived that night, I was beside myself as they were asking me what the plan was. It was so distressing and I’ve spoken to his oncologist and nurse since, to tell them that the situation should never have happened and I would be heartbroken if it happened to someone else. Sadly, we were badly let down in many aspects of my husband’s care and I really wouldn’t want anyone else to experience what I went through, which was so brutal and should never have happened.
I breaks my heart every day just thinking about what happened and I feel such incredible guilt for carrying out CPR under pressure and in panic mode, instead of just holding him in my arms and letting him go peacefully as he deserved.
Life is truly cruel to some of us!
Rhiannon, I am truly sorry for your experiences when your husband sadly passed away. I myself have just lost my wife on the 18th December 2019 and have just had her funeral on the 13th January 2020. My Tina had Small Cell Lung Cancer and she had a terrible last 24 hours where she too was gasping like a fish out of water. I found this terrible to watch, and it started to haunt me. Everytime I closed my eyes that was all I could see. I decided to go and see her at the chapel of rest in the Funeral Home, they had completely changed her by putting on her Make-up and clothes and she just looked beautiful. It was like she was asleep, No Pain, No Suffering. My wife's Doctor had got her to sign a D.N.R so we had none of the CPR or Paramedics, the District Nurses were the only point of call. They done all the medication and then the Certification of Death. Thankfully we didn't have any bones broken, she was allowed to pass.
What you need to do is keep telling yourself that your husband is no longer a sufferer of this awful disease and that you done everything that you could, to ease his suffering, and that you tried with all your Love to help him. He will be with you everywhere you go and he will guide you every step you take. Be strong and God Bless
Honestly you are guilty of nothing more than wanting to do your best for your loved one.
I'm sorry that the medical staff fell down on such an important thing, my husband was very positive at first he felt that he would get better. The hospices are all having to make do with donations but the specialist nurses at hospital and particularly his GP should have talked about an end of life strategy just in case. It's probably 'sods law' that if you put one in place you don't need it. My mother's GP put a care plan in place for her several years ago covering what she would want in an emergency, again as it happened she died in hospital quietly and the documents telling people like paramedics what to do in an emergency is in a file untouched.
Why don't you complain to the hospital after all if it doesn't get looked into properly nothing will change and his oncologist may agree but it can be difficult for an insider to make changes. Besides the hospital has a PALS service, if nobody complains they'll all be made redundant.
Wow this should never be happening to so many of us. I will also be writing a huge complaint to the hospital!! Which makes me sad as a nurse but my.husbands care has been appalling!!! He had stage 4 lung cancer, firstly they missed two large tumours on chest x-ray, then gave the wrong diagnosis which we have a letter stating the wrong diagnosis then finally got a correct diagnosis!! He was then bullied into palliative chemo, not given an.ootion! Told him he could drink with it, he had PTSD and alcoholism! I was ignored with this information and I strongly think this mix killed him. After two treatments I found him dead!!! Dialled 999 kept telling me to resuscitate, treated me like an idiot when I said I was a nurse! He was stone cold, pulseless and fixed pupils, I tried at first, cracked a rib but then pretended I was doing CPR. Ambulance crew insisted on trying as he had no DNR, we had no idea he needed one so soon, he had not even got to the first scan to check on treatment!!! Now it is s coroner's case and they are implying it was deliberate!!! The lack of compassion is horrendous!!! I am ashamed to have trained in that hospital! To cap it all they initially list his wedding ring too and then lied to me about it!!!
I am pleased to say that I was able to lay him to rest yesterday and we had a lovely service and I feel he is now at peace. I know I did my best and I looked after him well but he died over Christmas only 5 days after our wedding anniversary and that is hard too. I miss him terribly.i know it is early days.
I would hope that this type of experience us not so common but this is three in one conversation!!! I will not stop until I have an apology and admission if mistakes from the hospital!!! I owe him that! I promised him I would sort it.
Hugs to all of you suffering the same xxx
It's not just cancer patients, my friend who has a stoma was in hospital for nearly a month which what, after 5 CTs, was diagnosed as a twisted bowel. She was out for two weeks and then re-admitted as an emergency and has just had another section of bowel removed because she had a stricture and adhesion. No only was she in excruciating pain but now she looks like she is a famine victim she weighs just over 40kg and is tall.
It appears that some little smart a*** thought s/he knew better than the colorectal team as first time she was in none of the scans were shown to them.
I ask you do they know what the word 'cooperation' means?
Hi Akela2516 and everyone else in this thread,
I am so very sorry for the loss of each and every one of you and it is so tragic that so many times, as if losing your loved one to cancer was not tragic enough, you then have to deal with a lack of medical professionalism and care and maybe even interest.
Akela2516, it must have been very traumatising for you to be treated like an idiot throughout the whole thing particularly as you yourself are a nurse. What stuck out from your post was your decision to stop CPR and I think I would have done exactly the same. I am just back from a End Of Life Doula course in the UK and one of the things we discussed there is the eagerness and need of paramedics but sometimes also the general public to do CPR even though everyone knows that it would be better to let nature take its course. In most cases, you can argue that an advanced care plan has to be in place stating very clearly the DNR, but when we are faced with the decision or whether or not to do CPR and bring our loved one back to life - and for what we don't know but we do know that it will be more suffering - I think it is better to not do it. Anyway, those are only my thoughts from the course which is still very fresh in my mind.
Colaboration is a good word. But also team-work. Doctors, patients, nurses, social workers and all other healthcare professionals should really work together and build a team with the best outcome for the patient in mind. The current medical model doesn't work and we all know it. It needs complaints like yours to create the feeling that change is necessary I think.
Hi Squeakygate and all,
I know this is easier said than done Squeakygate but please try not to feel guilty for having done CPR. You say yourself that the situation was one of panic and helplessness and of course our natural instinct, and then you were even told this, is to do CPR to keep your loved one alive and it is very difficult in these moments to pause and say, "Hang on a minute! This may not be the best thing for the patient here!" So please be kind to yourself. It was the best thing you were able to do in this very difficult and traumatic situation. Forgive yourself. Please forgive yourself. I am sure he would have forgiven you already.
I like moving forward. I am trying to do that. I know I need to be kind to myself and actually do things for me sometimes. Something I am bad at!!
I am an old trained nurse!!! Trained back in the 80s and we were taught that giving someone a dignified death was as important as life! That is what upsets me I think because that has gone.
I found the most wonderful undertaker who was exmikitary, ideal for Ric but also had my values. He always called him by his preferred name and talked to him. He went beyond his job as did his staff. It has really helped. He is just so respectful and thoughtful.
Thank you for your kind words Mel. I can do this but at the moment I am staying busy. I prefer my tears alone. My mum is doing my head in because she is telling me how to grieve!!!! My children who are 20 and 16 and have already lost their Dad before their stepdad are amazing and know exactly how and when to help!!! My dad is my rock at the moment. I am back at work because it had helped! I work in the private sector and they have been fantastic.
I am sad the NHS is falling apart and compassion has gone! Never mind keeping looking forward that is the way we are going x
I agree with everything you say. A little more honesty would have saved us going to pointless appointments. I understand hope and a positive attitude is essential, but at the moment things just arent working. Perhaps we could all send Iin suggestions for improvements x
I'm a retired Met Police Officer and during my time a fully qualified First Aid Instructor amongst others. As such we were given lectures and advice from doctors who had practiced in many scenarios from hospitals to front line war fare. Without exception all said that CPR outside of a hospital environment doesn't work 95% of the time. And when it does,the chances are that the casualty would have survived anyway. Except they've now been left with horrific injuries including broken ribs as a result. Plus - if performed badly or too late - the casualty may well survive but suffer brain damage.This training and knowledge was given over 30yrs ago. Yet still CPR is still taught to well meaning first aiders?
I always wear a necklace that says ' Do not resuscitate ' I just hope to goodness that if I have a heart attack in the street someone sees this message and bloody well leaves me alone. If need be to at least let me die in dignity without their well meaning intervention,
At the end of all our journeying will be to find ourselves back where we started knowing the place for the first time. TS ELIOT.
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