My father had been in hospital for twelve weeks. Got over double pneumonia but wasn't given an expectorant - the consultant, a heart specialist lied to my face and said they didn't work - and he didn't bring up any phlegm so chest infection number two set in, no expectorant again but he was as strong as a horse and managed to get over that one and the next, this time with an expectorant as the consultant had been changed.
Recovering nicely and finally free of infection in a quiet bay, someone decided that it would be better for his mental stimulation if he was moved back to an acute ward, full of germs and it's not like you can argue when your gut feeling says this really isn't a good idea and they have their medical 'knowledge' to simply over-ride you. So, he finally got an MRI (eight weeks in!) which showed a small bleed in the area that affects speech and swallowing so all of a sudden he became eligible for a PEG - we were so relieved - and then the discharge date was held up by his consultant's holiday - well, it would be wouldn't it?!!! - and then he'd got another infection.
They were so busy being sure that he'd simply keep getting aspiration pneumonia because of the dementia that they couldn't be open to the possibility that he might not - he hadn't in the seven years he's had dementia because he slept on his side with his mouth shut normally and couldn't do that in hospital because of the NG tube he had for so long because they wouldn't make a decision about the PEG, and so there he was, always having to breathe through his mouth, and them not bothering about the germs he was hoovering up in a ward with people coughing, let alone dying, around him.
From start to finish he seemed to be doomed; it seemed like everything that could be done to kill him off was done. Call me paranoid but when the treatment for people in much worse physical shape but without dementia was so different, it wouldn't surprise me at all to hear, at some point in the future, that someone high level in the NHS had the bright idea of making a list of 'issues' and if you ticked enough boxes then the care would be the minimum so as not to arouse suspicion by families, and enough to make sure the hospital couldn't be sued, but the idea would be to cull a few off who don't really matter because they can't recover and there's no point to them. That's how I felt about my father's care, let alone this Liverpool Care Pathway nonsense; euthanasia with a pretty name is all that is, and why have so much secrecy about it if it is 'proper' care?
So, a discharge meeting had been set up for sometime in the week he died - so close, so very close to getting him safely home and yet here we are, without him. My mother and I are just broken.
When we went to register his death, we said that the third of the causes of death should be neglect given all that had gone on and evidently there is an alert with aspiration pneumonia and cases can be referred to the Coroner if there are issues surrounding the death so we had that done. We were praying that it didn't mean a post-mortem but it did and he didn't die of aspiration pneumonia as stated by his consultant but broncho-pneumonia which is germs not his own fluids and given that move back into an acute ward, foreseeable and thus preventable so we are not letting it go; I couldn't protect him enough when he was alive so the only thing I can do for him now is to fight to make the hospital and its pathologically arrogant staff pay for what they have done to him, and to me. I wasn't ready for this. I wouldn't have cared if we hadn't been able to get him mobile again, if he couldn't talk quite so much - he spoke to me the morning of the day he died, how can that be? - if he had to be turned every four hours in the night and fed through a tube, or even if we hadn't had much longer, all I wanted was to bring him home and take care of him and make what was left of his life full of light, sun and love, and now I have nothing. If it wasn't for my mother, I'd have joined him by now; I don't know how to keep going without him.
He had become our entire lives. You don't realise quite how much until it is gone. Everything was about him and his needs, his food, his laundry, everything. I'm not complaining and I would give up all this new found (and so desperately unwanted) freedom in a heartbeat to return to what I had, and the worse that there would have been when he came home but it never occurred to me that he wouldn't.
I sat by his bedside every day from lunchtime until 7.30 p.m. at the earliest and had the time to write my diary for a change, so there are all my concerns stated, as well as documents that went to PALS on a regular basis so there is a paper trail of my complaining about the rubbish way the nurses treated him, the doctors arrogance and the difference in his treatment in comparison to others, so it's not like I didn't raise concerns - I don't know if any of it will help though, and there is always going to be my guilt at not having pushed hard enough to get him released but it was like herding cats trying to get anyone to do anything.
I have no doubt that the hospital will try to wriggle out of any liability and even more likely is trying to blame me, that started before Daddy died, but I will try my hardest not to let them get away with this. Even the death certificate was incorrect and again, due to the arrogance of doctors thinking they could get away with breaking the rules, and their assumptions as to how he died - the certificate from the hospital should be signed by the consultant treating the person and then all the notes are supposed to be reviewed by someone who hasn't had anything to do with the patient, so why was it co-signed by one of the junior doctors on the consultant's team? She may not have known the correct procedure but there is no way he didn't know.
We don't ever have to deal with anyone from Social Services again is about the only light in this terrible soul-destroying gloom but we have paid far too high a price for that. I truly don't know how we will ever get over this. My mother is 81 and I'm an only child and if it wasn't for her ... so how do I face the inevitability of this again, with no-one but me to cope and remember, and no support?
My anger is helping, and endless tidying and sorting out of things that have piled up for years but the thought of never seeing him again, never hearing him talk to me again, never being able to cuddle or shave him, or fuss over him is so, so hard to bear as are the memories of him everywhere, not just our home but all over our town where I wheeled him daily.
Like I said, we are broken.
Oh and I'm supposed to go and sign on at the Job Centre in a few weeks to find a job after all this - how is that going to happen? I can hardly walk about, I'm not eating and I'm reliant on sleeping pills - the perfect employee.
Recovering nicely and finally free of infection in a quiet bay, someone decided that it would be better for his mental stimulation if he was moved back to an acute ward, full of germs and it's not like you can argue when your gut feeling says this really isn't a good idea and they have their medical 'knowledge' to simply over-ride you. So, he finally got an MRI (eight weeks in!) which showed a small bleed in the area that affects speech and swallowing so all of a sudden he became eligible for a PEG - we were so relieved - and then the discharge date was held up by his consultant's holiday - well, it would be wouldn't it?!!! - and then he'd got another infection.
They were so busy being sure that he'd simply keep getting aspiration pneumonia because of the dementia that they couldn't be open to the possibility that he might not - he hadn't in the seven years he's had dementia because he slept on his side with his mouth shut normally and couldn't do that in hospital because of the NG tube he had for so long because they wouldn't make a decision about the PEG, and so there he was, always having to breathe through his mouth, and them not bothering about the germs he was hoovering up in a ward with people coughing, let alone dying, around him.
From start to finish he seemed to be doomed; it seemed like everything that could be done to kill him off was done. Call me paranoid but when the treatment for people in much worse physical shape but without dementia was so different, it wouldn't surprise me at all to hear, at some point in the future, that someone high level in the NHS had the bright idea of making a list of 'issues' and if you ticked enough boxes then the care would be the minimum so as not to arouse suspicion by families, and enough to make sure the hospital couldn't be sued, but the idea would be to cull a few off who don't really matter because they can't recover and there's no point to them. That's how I felt about my father's care, let alone this Liverpool Care Pathway nonsense; euthanasia with a pretty name is all that is, and why have so much secrecy about it if it is 'proper' care?
So, a discharge meeting had been set up for sometime in the week he died - so close, so very close to getting him safely home and yet here we are, without him. My mother and I are just broken.
When we went to register his death, we said that the third of the causes of death should be neglect given all that had gone on and evidently there is an alert with aspiration pneumonia and cases can be referred to the Coroner if there are issues surrounding the death so we had that done. We were praying that it didn't mean a post-mortem but it did and he didn't die of aspiration pneumonia as stated by his consultant but broncho-pneumonia which is germs not his own fluids and given that move back into an acute ward, foreseeable and thus preventable so we are not letting it go; I couldn't protect him enough when he was alive so the only thing I can do for him now is to fight to make the hospital and its pathologically arrogant staff pay for what they have done to him, and to me. I wasn't ready for this. I wouldn't have cared if we hadn't been able to get him mobile again, if he couldn't talk quite so much - he spoke to me the morning of the day he died, how can that be? - if he had to be turned every four hours in the night and fed through a tube, or even if we hadn't had much longer, all I wanted was to bring him home and take care of him and make what was left of his life full of light, sun and love, and now I have nothing. If it wasn't for my mother, I'd have joined him by now; I don't know how to keep going without him.
He had become our entire lives. You don't realise quite how much until it is gone. Everything was about him and his needs, his food, his laundry, everything. I'm not complaining and I would give up all this new found (and so desperately unwanted) freedom in a heartbeat to return to what I had, and the worse that there would have been when he came home but it never occurred to me that he wouldn't.
I sat by his bedside every day from lunchtime until 7.30 p.m. at the earliest and had the time to write my diary for a change, so there are all my concerns stated, as well as documents that went to PALS on a regular basis so there is a paper trail of my complaining about the rubbish way the nurses treated him, the doctors arrogance and the difference in his treatment in comparison to others, so it's not like I didn't raise concerns - I don't know if any of it will help though, and there is always going to be my guilt at not having pushed hard enough to get him released but it was like herding cats trying to get anyone to do anything.
I have no doubt that the hospital will try to wriggle out of any liability and even more likely is trying to blame me, that started before Daddy died, but I will try my hardest not to let them get away with this. Even the death certificate was incorrect and again, due to the arrogance of doctors thinking they could get away with breaking the rules, and their assumptions as to how he died - the certificate from the hospital should be signed by the consultant treating the person and then all the notes are supposed to be reviewed by someone who hasn't had anything to do with the patient, so why was it co-signed by one of the junior doctors on the consultant's team? She may not have known the correct procedure but there is no way he didn't know.
We don't ever have to deal with anyone from Social Services again is about the only light in this terrible soul-destroying gloom but we have paid far too high a price for that. I truly don't know how we will ever get over this. My mother is 81 and I'm an only child and if it wasn't for her ... so how do I face the inevitability of this again, with no-one but me to cope and remember, and no support?
My anger is helping, and endless tidying and sorting out of things that have piled up for years but the thought of never seeing him again, never hearing him talk to me again, never being able to cuddle or shave him, or fuss over him is so, so hard to bear as are the memories of him everywhere, not just our home but all over our town where I wheeled him daily.
Like I said, we are broken.
Oh and I'm supposed to go and sign on at the Job Centre in a few weeks to find a job after all this - how is that going to happen? I can hardly walk about, I'm not eating and I'm reliant on sleeping pills - the perfect employee.
