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.
Thank you
Justine x
I don’t think these medics understand the trauma they are leaving people to cope with afterwards. I will never get over Brian;s care or lack of it, although it was over ten years ago. I know they are under pressure and can be rushed off their feet but this is not always the case. When Brian was in hospital I was looking for a member of staff, it was a Sunday morning, I found seven members of staff in a room reading the papers. On another occasion I found three nurses including the sister in charge in her office playing games on the computer. Brian was being violently sick and it took twenty minutes for a bowl to be brought to his bedside after I made a request. A relative of Brian’s was connected to the hospital and as soon as he and senior officials took an interest in Brian it was amazing how his treatment changed. Didn’t like pulling rank but when I walked onto the ward the sister would turn her back on me and never returned my greeting. Ignorant. This was simply because I was daring to ask questions about my husband but I personally think I worried her. The surgeon was helpful though and I think he could see I was having difficulties with the senior nurse. I should have made complaints because I was told a few years later by my nurse friend that this Staff nurse had been in trouble because of her attitude. No doubt she was power crazy and had little interest in the patients as far as I could see. I had also worked in nursing and been in charge although not strictly general except on rare occasions when I did one to one. So did have some knowledge. BUT we shouldn’t have to make demands, it is both stressful and tiring when we are worried sick.
xxx
Hi Justine
My belief is there is no finer counsellor than ourself, however having said that, we all need some help at some point. If you work do your company offer counselling? Another route is go to your GP who can refer you (long waiting lists where I live) or if you have the financial means you could find a private one. Sometimes though, all we actually need is a listening ear and a shoulder to cry on (face to face with another person) , but listening to many people on here and in my own situation, it seems sadly very lacking. Society in general seems to avoid death like it’s a disease you can catch and a lot of people feel uncomfortable around those of us that are bereaved. In my opinion, grief is not addressed properly and there is a lack of resources and services.
People I know who are/have been bereaved, tell me the first go to answer for grief is go to the Dr equals, anti depressants or anxiety tablets or phone the Samaritans. All these go to’s can actually have a detrimental affect because we are not ill or mad or even depressed. We are sad, lonely and our hearts are broken. I was fortunate like I said previously, that I met a lady online and we agreed to be grief buddies/mentor to each other and my God it works. We are now very close friens
I know a person’s GP is supposed to be the first port of call for any onward support, but unless you have a very good relationship with them, they generally don’t have the time (to sit a listen if all you want is to talk) and will either fob you off with medication (which brings it’s own set of problems) or a referral to NHS counselling (waiting list:months).
There are a few charities who offer grief counselling (including Sue Ryder) if you are unable to afford to see someone privately. There may be a short wait but it is generally better than NHS waiting times. Some organisations offer f2f support, others offer telephone/video-call counselling.
Each persons needs will be unique to them. Some people may not feel the need to seek out grief counselling, for others it may be a lifeline at a time when they badly need support, particularly if they don’t have family/friends to turn to or just want an impartial place to offload.
After the initial trauma of losing Mum, I went on auto-pilot and got down to the business of dealing with all the things one has to deal with when a loved one dies. I carried on going to work. I sorted out funeral, legal stuff, probate, sale of house etc. I managed and functioned…until one day I ground to a halt both mentally and physically and couldn’t do it anymore. That was when I knew I needed help.
I would encourage anyone who is struggling, to reach out for support. There is help out there, unfortunately it isn’t always well publicised and you have to go looking for it.
Lyn, another very helpful and true message coming from you. I do so agree with everything you say.
GP’s struggle with grieving people because, as you say, we are not ill, depressed, or going mad and they don’t have medication for loneliness and being confused and frightened. I found the local Hospice to be the best help and well worth a visit. Ours does have so much to offer if you want to go down that route.
In this area they have opened Cafe meetings for grieving people and I am about to find out more as it was on the local news this week that more of these cafe’s are opening and one is in my town. They are apparently spreading around the country When I have more information I will let you all know.
Pat xx
Locally, there seems to be bereavement groups/meet ups for the age group 65 plus, but nothing for those who are younger.
Shocking that we have to make a fuss to get decent care, my husband was wretching no one came so I went to nurses station and asked for a bowl, this was handed to me, but no one came to check on him, the same nurse informed me that hubby had had a really bad nose bleed, I already knew as his top was covered in blood, I had to ask the nurse to cap his drip so I could change it, 2 months after my husbands death, by daughter was admitted to same ward ( she suffers from an auto immune disease) and said nurse was on duty, but was now a sister, I think she was about 25, when I was training you were usually well into your forties before you becam a sister. I didn’t bother mentioning I was a retired nurse until I saw a doctor and asked for his test results and why certain ones hadn’t been done take care Jan x
Hi Pat
Wow I had not heard of those Cafe Meetings…what a wonderful idea! Keep me posted please…
I cannot wait to eventually retire and live on the island. I have several friends there who have lots of meet up’s for almost everything. Living in a big city (Birmingham) you are just a number and swallowed up amongst the masses!
Hi Lyn, as soon as I find out anything I will let you know. It was all over the South news a few days ago and apparently going to spread all over the country. But on the Island the town I live in has been mentioned, so I am keeping my eyes open for info. At the moment I think it’s just in one town and taking off according to the internet.
I’m also a Brummy although I left for Staffordshire when a child and then to Worcestershire when I married for the first time then onto Shropshire and eventually onto the Island and married an Islander so no chance of moving off even if I wanted to. My accent still keeps being picked up on, so I never lost it. My mother was a bit snobby and didn’t want me to speak with an accent. I was sent to private schools in Harborne and then Edgbaston and had elocution lessons. I started to talk ‘posh’ and had the mickey taken out of me by local kids so started annoying mum by speaking broad brummy, now I can’t get rid of it. Anyway all the best.
Pat xxx
Hi couldn’t agree more, why is it so difficult. I don’t think they like people that make waves but what have they got to be afraid of if they are doing their job correctly. I was afraid to say too much in case they made Brian suffer and he couldn’t defend himself at that time, terrible isn’t it. On one occasion I was washing and changing him, yet found that he was wired up and I couldn’t change him so I asked for a nurse to remove wires for just a few minutes, it too over an hour for someone to do as I had requested although two nurses did come but didn’t seem to know how to do it. It wasn’t rocket science I could have done it myself but didn’t like to interfere.
Yet I spent a couple of days in hospital this year and then a day at another one and have since received two questionairs about my treatment so they are trying to improve situations. But when Brian was in I could have gone to town on them and written a composition about the terrible sloppy treatment. Except for the surgeons that I couldn’t fault but they seem to be the faceless ones as they do rounds when the patient is on their own and when so ill they have no idea what is being said to them. A second person or close relation should also be with the patient when visited by a consultant. When I asked to be with him I was forcibly held back at the door but got past and was able to be there while the surgeon answered questions. Brian was rushed to surgery for the third time in as many months and very weak I thought I had every right to know what his chances were, when you are very ill do you know what is happening or think of questions to ask. How can family know what is going on unless we ask questions and then, as I found, you get sent to ‘coventry’ for daring to ask. They hate you for it. We will never get over being put in such a cruel situation.
xxx
Both times I asked to see a doctor to discuss my husband, the nurses seemed to see it as a slight to them, I never mentioned I was a retired nurse as I just thought that would put their heckles even more and like you I was worried it may affect how they treated my husband, when all we want as relatives is the reassurance that our loved ones are being cared for in the best possible way. I originally trained as an EN and it was all ward based nowadays it is mainly uni with hospital placements and I don’t believe they learn about the basics of care I.e actually getting to know their patients, when I trained our tutor told us that the best observation you can take are speaking, watching the patient to the patient, touching the patient and above all listening to them, but nowadays it’s stick the obs machine on them job done, I know they are not all like that but in my husbands case it certainly seemed like it take care Jan x
What you say about ‘watching the patient’, observation, touching, speaking. Isn’t this how the old doctors used to work. They could tell by looking closely at the patient and using instinct. Now they hardly acknowledge you as they keep looking at the clock and quickly shove a piece of paper (prescription) in your hand. I have told the nurses at the hospital that they have it easy now with the machines, how much of a brain does it take to use them. In my day we had to do TPR’s by hand and judge ourselves. No machines to do it for us.
Today I was at the local hospital and all around was posters some were about abuse to staff. I thought what about abuse to patients and then I came across one actually mentioning the care for patients and encouraging patients to wear their own clothes as pyjama’s indicate sickness. Things are beginning to change at last.
I hope things are changing for the better, patients will often say they feel,okay as they don’t want to bother staff and that’s where actually engaging with your patient is vital, look at their facial features, look at what there doing with their hands, it often tell a whole different story, but unfortunately when they do ask how your feeling their eyes are on the obs machine, my daughter has an autoimmune disease and unfortunately spends quite a lot of time in hospital, she constantly has to ask for her meds, a lot of her treatment is infusions and she now just disconnects and caps them herself or she would never get to the shower, staff think she can make do with a bowl and wash one handed, I understand how busy they are, but it has always been this way, rant over, time to take dog out and get soaked take care
Jan x