Possibly about to lose my dear old mum who I’m sure that switchlogic will gleefully point out is all I’ve got I hope that no one should need reminding of the horrors of these related problems but it can’t do any harm to post them here.The end result being having to watch the victim having to struggle with the inevitable onset of SAE that goes with it.Which is way worse than than the terminal throes that I had to see my dad go through at the end of another short one sided fight with lung cancer.
If that wasn’t enough this was the NHS reaction to it.When she was admitted with a broken arm resulting from a fall that was recognisably connected to leg ulcer and septic foot and unsteadiness issues they decided that it would be good idea to bandage up her legs etc and then send her for physical ‘rehabilitation’ exercises with the intention of improving here standing and walking abilities.Where they added confusion to the issues so thought that she was simply old and ‘confused’.After around more than a week of that she’s then got the obvious onset of gangrene in a toe but no problem a few oral antibiotics and told to stop being scared of standing will soon fix all that.Meanwhile the confusion is now reaching delirious levels.So after a short argument with the ‘rehabilitation’ hospital doctors they finally relent and send her back to the main hospital as a non emergency case.When on final arrival at A and E she then has to go through the ‘triage’ process and after which and more hours of waiting they decide that she’s got a serious problem which is a medical emergency.No zb sherlock.Then to add insult to injury they think that the best way to deal with a patient fighting for their lives with this catastrophic problem is too send them to …a ward specialising in and full of people suffering with severe bronchial issues quite possibly contagious.The calls for a seperate side room let alone where NHS guidelines say she should be on an intensive care ward falling on deaf ears.
I am truly sorry to hear that you are going through this awful experience, really all any of us can say is that we are thinking of you and your mum, would say that your strength of mind will see you through, and that we know you will fight hard to get the care that she deserves, just please remember to look after yourself.
The prospect of losing one’s parents fills each one of us with dread. For myself this was fortunately many years ago so it would be a distraction to say more, however I am currently seeing my dear wife bravely coming to terms with her own mum’s declining physical health starting to accelerate, and the seemingly indifferent attitude of the medical profession towards more than a passive, management treatment for the elderly.
Thank you for the reminder to observe and note what may have at first appeared to be unrelated issues surrounding a medical incident, and also for the link to prompt requesting the consideration of formerly standard, but now unfashionable treatments.
Carryfast, late to this. So sorry to hear about your troubles getting your Mum the right care. Happens a lot to elderly people and you do feel as if you are having to battle with the system at such a worrying time.
albion:
Carryfast, late to this. So sorry to hear about your troubles getting your Mum the right care. Happens a lot to elderly people and you do feel as if you are having to battle with the system at such a worrying time.
Do you have an update on how things are?
Thanks albion.Coincidentally I’m just taking a short break from my hospital vigil duties of spending hours day and night at her side with her.The situation so far is that she’s fought like a lion with this evil monstrous thing and is miraculously still with us.But unfortunately the prognosis is that she’s possibly out of immediate danger but the awful damage caused to vital organs etc will definitely shorten her remaining life drastically to the point where she’ll realistically now be confined to a bed advisedly to be transferred to a nursing home to see out what time she has left.Although I’m torn in that by her wish to return home whatever it takes and my heart also telling me to go with that wish no matter what.
Which then just leaves the question of what might have been given the correct treatment to her leg ulcer issues and fast reaction by those responsible for her care along the lines of recognition of the risk in her case,followed by fast referral to A and E then put on the correct treatment within less than one hour of arrival and immediate transfer to an intensive care unit as called for in the best practice guidelines.In this case even the supposed follow on oral antibiotics from IV having been left out based on the excuse that insufficient response was being shown to IV antibiotics.But which somehow seemed to have resulted in a significant lowering of infection levels and an amazing upturn despite lack of access to intensive care provision.Now followed by the all too predictable downturn seemingly after the withdrawal of anti biotic treatment and all too predictable damage caused,in trying to fight off such a catastrophic medical issue without the full modern day medical armoury being made available to her,according to accepted guidelines,for whatever reason.
On that note I’d really hope that we’re not seeing deliberate rationing and triage of NHS provision based on age lines and tombstone economics.But if it looks like a duck and quacks like a duck in that her treatment seems to me that not expected in the 21st century and certainly in no way matching the stated guidelines and big Sepsis publicity campaign.More like the opposite in the Health care providers’ reaction in her case.
Sorry to hear this CF, it’s a nightmare situation and so frustrating. I lost my Dad last year, lung cancer that metastasized to the bone and brain, they put him on a trial treatment that was actually shrinking the tumors, which sounds good, but it took such a toll on him that it ended up killing him. 9 months of pure misery, in retrospect it would have been far better to have let nature take its course and have palliative treatment.
A friend had a similar experience, except her Dad had dementia and had no idea he was riddled with cancer, he never suffered until the final week.
Sometimes the treatment causes more pain and anguish than the disease itself, hard to accept as you want to try everything you can, but the thing that makes me really sad about my Dad, apart from losing him of course, is the suffering he endured, which in hindsight was a waste of time.
newmercman:
Sorry to hear this CF, it’s a nightmare situation and so frustrating. I lost my Dad last year, lung cancer that metastasized to the bone and brain, they put him on a trial treatment that was actually shrinking the tumors, which sounds good, but it took such a toll on him that it ended up killing him. 9 months of pure misery, in retrospect it would have been far better to have let nature take its course and have palliative treatment.
A friend had a similar experience, except her Dad had dementia and had no idea he was riddled with cancer, he never suffered until the final week.
Sometimes the treatment causes more pain and anguish than the disease itself, hard to accept as you want to try everything you can, but the thing that makes me really sad about my Dad, apart from losing him of course, is the suffering he endured, which in hindsight was a waste of time.
Life can be so cruel…
Thanks nmm.Yes I also went through the lung cancer issue with my dad too and it was diagnosed late so he had no chance but the lead up and the end was horrendous either way and don’t think there was any benefit for him in the resulting lack of the usual cancer delaying efforts.But I’d hoped my mum would then be spared a similar awful exit but has now ended up with something a lot worse if that can be possible in the form of this evil unimaginable thing in which the body’s immune system turns against itself by eating kidneys brain etc and turning the heart into similar situation as a runaway diesel burning its own oil because it damages ateries resulting in a drop in blood pressure which the heart mechanism then tries to compensate for by running at a silly rate up to 200 beats pm together with an unbelievable breathing rate.The result for the poor victim is massive delirium including thinking that they are falling and standing and begging to be laid down when they are actually lying on a bed while at the same time effectively being forced to run beyond endurance to the point where eventually either the heart blows up or is damaged beyond normal use again.While ironically she’s been fighting with Myeloma for a number of years now and had excellent results from all the different chemo and radio treatments to the point where the benefits seemed to outweigh any of the limited if any side effects.Although whether that had damaged her immune system resulting in the predisposition to Sepsis is a possibility but the long term ongoing infected leg ulcer issues would have been expected to have caused that long before now if so.
While as you’ve seen my issues are the seeming normally accepted protocols which are in place to minimise such damage having been over looked in her case and which should be made available regardless of age when the two factors of infected wound/s and confusion for example are seen together regardless of the person’s age or medical history.IE we should all be equal from the youngest to the oldest in being given the best chance possible in the fight against this wicked thing and which is totally merciless and indiscriminate in who and how it attacks.In which case trust me anyone would be praying at the victim’s bedside for medical science and the emergency protocols to be working at their best if they are ever unfortunate enough to see the way this can destroy a human being let alone loved ones if/when it gets a hold.
As for your final sentence +1.In my case having now seemingly shattered my limited basic Christian beliefs in now wondering exactly who is in charge here and maybe there is some truth in the rumours that the battle between good and evil has already taken place and God lost it.
That sounds awful CF, I never knew anything about those conditions until now. Nothing I can say mate, apart from offering my sympathy and hopes for you and your Mum.
And it’s almost as hard on you to watch as it is for your Mum to bear.
I had to take the decision to put Mr A into care - he had dementia - and really it was the best decisions as there were people around to look after him, people to talk to and break the day up. Obviously it’s a completely different scenario to the type of care your mum will need, but I just wanted to say that in the right place, care should be viewed positively. There’s no reason why you wouldn’t be able to bring things from home to make her feel more settled.
Good luck with whatever you and she decide.
NMM, I caught an interview with an oncologist and he said that the treatment options he laid out for his patients, a lot of them he wouldn’t pursue.
albion:
And it’s almost as hard on you to watch as it is for your Mum to bear.
I had to take the decision to put Mr A into care - he had dementia - and really it was the best decisions as there were people around to look after him, people to talk to and break the day up. Obviously it’s a completely different scenario to the type of care your mum will need, but I just wanted to say that in the right place, care should be viewed positively. There’s no reason why you wouldn’t be able to bring things from home to make her feel more settled.
Good luck with whatever you and she decide.
NMM, I caught an interview with an oncologist and he said that the treatment options he laid out for his patients, a lot of them he wouldn’t pursue.
Although it’s not as violent in the way it attacks Dimentia is another nasty medical issue which was feared by my mum.I guess we can only be grateful for small mercies in that although this has left her awfully confused to the point of sometimes thinking that the hospital ward she’s in is a shop for example she’s still able to remember things and people and friends going way back and still have a laugh with the family and hold a reasonable conversation underneath it all.
As for her situation we’ve agreed with the hospital that we’ll try the palliative assisted home care option but with the option of changing that to nursing home care if it doesn’t work out for us.Having said that even to the end I’ve got reservations with the hospital having withdrawn treatment when I feel that she could have a better more viable outcome given some more time in hospital and some more anti biotic treatment and whatever it takes to disinfect her leg ulcers and with the hospital’s claim that she supposedly hasn’t responded to that which she’s had seeming to be unbelievable going by the state she was in in the A and E department and the horrendous effects during the first week compared to her now chatting and laughing and eating and drinking limited amounts notwithstanding the heart and kidney damage.The inevitable result being that the septicaemia which kicked off the Sepsis attack will probably re establish itself in the short to medium term and the hospital suggesting that they will allow nature to take its course with no possibility of readmission.IE possible misuse and railroading of the palliative care system to add to possible unnecessary damage caused by lack of care of leg ulcer issues followed by not only an unfit for purpose NHS Sepsis risk recognition and emergency admissions system.But also then rationing of intensive care provision when that inevitably ended up in septicaemia and severe Sepsis.
What an awful experience for both of you. The only good thing is that your mum is able to laugh.
As for the medical situation don’t forget that you have a fundamental right to ask for a second opinion even if you have to go private for it, this will not normally be refused. My mother did so, at the request of his pathologist brother, when my father was in hospital for the final time. He had been tilted head down to keep blood flowing to the brain, which had resulted in a recommendation to amputate his now gangrenous legs.
cav551:
As for the medical situation don’t forget that you have a fundamental right to ask for a second opinion even if you have to go private for it, this will not normally be refused. My mother did so, at the request of his pathologist brother, when my father was in hospital for the final time. He had been tilted head down to keep blood flowing to the brain, which had resulted in a recommendation to amputate his now gangrenous legs.
Thanks cav.I’ve actually been thinking along similar lines but which will probably be easier when she’s discharged.Ranging from everything from continuing with anti biotic regime to clear the remaining infection and hopefully doing something about the leg ulcer issue either less likely in the form of amputation under local aneasthetic having understandably been told that she’d never stand up to general aneasthetic,or at least something more effective than just changing dressings and using sterile water irrigation which seems like something out of the dark ages when even by 1940’s standards she’d be expected to have the wounds disinfected and dressed with iodine and iodine impregnated dressings and her situation to date seems to prove it.On that note the excuses so far have been they can’t amputate limbs under local aneasthetic and they’d rather waste money on at best silver impregnated dressings than use old school proven iodine disinfection.To which I received no answer to the questions how would they release a trapped by the legs traffic accident casualty given the choice between burn/die or amputate obviously with no access to an operating theatre or therefore aneasthetising equipment and if silver was supposedly any good at beating infection why did we ever bother with iodine and why is iodine still used in operating theatres to disinfect wounds.Sometimes the NHS’ ideas just seem totally unfathomable to me which just leaves the question of the equivalent procedures as they apply in the private health sector.
To put it in trucking terms, I think the NHS is like a warranty, you have an electrical problem and the warranty fix is to chop into the harness and repair it, as soon as warranty is up the same problem requires a complete new harness.
Private healthcare is all about profits, however we’re talking about something far more valuable than money when it comes to the health of a loved one, so it’s an Avenue I would definitely explore.
newmercman:
To put it in trucking terms, I think the NHS is like a warranty, you have an electrical problem and the warranty fix is to chop into the harness and repair it, as soon as warranty is up the same problem requires a complete new harness.
however we’re talking about something far more valuable than money when it comes to the health of a loved one,
It seems to me more like a case of an unlimited repair budget for some based on numerous random and arbitrary qualifying criterea.Being seen as too old probably counting as one of the worst ticks in the worst of the wrong boxes.
On that note this is the NHS’ own guidelines for this type of illness.However it seems to be a lottery as to who that applies to and when obviously under the caveat of you ‘may’ ‘require’ ( get ) admission to an ICU if it’s a severe case which this certainly was with the damage to my mum’s heart etc to prove it.
Then they’ve got the nerve to say that the all too predictable damage to the vital organs caused by not getting that counts against the victim in the decision to then withdraw further treatment and send them home to die.
In addition to the even worse lottery regarding the standards of treatment of the causes like leg ulcers etc in which they seem to think that silver coated dressings beats Iodine.Tell that to any wounded serviceman.
From what I’ve seen this has just confirmed what I thought in that the NHS is unfit for purpose crippled by under resourcing and resulting rationing laughably hidden under the euphamism of ‘triage’ being there first and foremost to cut the health care component of employers’ wage bills with the working class being taken for mugs in believing that the thing is good for them.Especially if going by the correct idea that people are far more important than money.
