So hes lost loads weight,unable to chew or swallow propetly, dentures dont fit as hs mouth has shrunken. now unable to walk after brjng bed bound, requires nebulisers to clear his chesg ftom the pnrmonia he had. continues to have infections after his life threatening sepsis, now requiree constant oxygen. he is now STABLE-ly unwell as can fall back into acute phase anytime. planning for nursing home which is a miracle as doctors told us every day he wont survive. i dont want to rock the boat by complaining how dirty of lack of cleaning hss been done. we rely on staff to help dad and if we get their backs up we ll renegade help.
I ferl like i want to campaign for relstives to visit sick relatives more. in othrr countries they camp by the bed. if all the patients were visited more they would have better outcomes. food for example is left infront of them and taken away wether its bern eaten or not-wether the patient is malnutritioned or dehydrated or not. staff dont have time-but someone must find the time to help these patients.
Ive been begging for fluids dad as he struggles with eating and drinking. they said they didnt want to overload him riskfluid in his lungs, now he has kidney damsge znd a anothr infection. please pray for dad to fight this infdction
Shaun, if he’s in hospital, surely he should be on an intravenous drip putting saline into him to ensure his blood salt levels are accurate, and NOT straining his kidneys with over-concentrated (ie, under-hydrated) blood!
IS he on a drip??
Just a thought, but have you read his medical notes? Remember the dreaded Liverpool Pathway (which I THINK is not applied any more??? But check!) whereby they can’t actualy ‘kill’ a patient, or even administer so many meds (eg, opiates) that they ‘die’…but they ARE allowed to ‘starve and thirst them to death’ …ie withholding food and liquid.
Have YOU spoken to the hospital’s Palliative Care Consultant? There MUST be one - it’s a standard role in all hospitals. You do need to understand what THEY think is going on - it really does sound like there is a complete ‘conflict’ between what YOU hope and want and what the doctors ‘assume’ is going to happen.
How are things going with getting him into a nursing home???
One the WORST aspects of ‘bedside care’ (and I’ve been there with my own husband) in hospital is that you are ‘tied’ to the bed, and so are not a ‘free agent’ for doing research and active ‘nagging’ and so on. It’s a very ‘helpless and frustrating’ position to be in, and I feel for you in that respect.
There is such a feeling that you - and the patient - are being ‘abandoned’ by the entire hospital and staff…
My husband was put on the Liverpool Pathway back in September 2013 and given a couple of days to live. He was told at the time that he could have as much morphine as he wanted to help him on his way.
Then another vascular specialist turned up and told him that an operation could be done. My husband has survived the original prognosis for 5 years now.
Nancy, that is scary! It just shows how ‘uncertain’ medicine still is in many ways…
In Cancerworld (where, sadly, I have experience for the worst reasons, my poor late husband), the forums always used to say to newbies:
‘if the surgeon tells you it’s inoperable, what they REALLY mean is HE can’t do it…doesn’t mean another surgeon can’t do it successfully!’
Also, my friend’s mother was discharged from hospital and ‘sent home to die in a fortnight’ - well, she rallied the moment she was out of hospital and lived another good nine months, dying peacefully at home and not in a hospital…
I’m glad your husband ‘survived to tell the tale’!!
5th cycle infdction. mjm wsnrs take dad home. dads want to go home. but if theres medical emerggency back in hisputal. famiky want to look at nursing homes to compare options. in meantime dads misersble here in hospital while famiky and hospital try and put things in place.
Shaun, ask for dad to have an NHS Continuing Healthcare Assessment asap. Free nursing care at home.
Lots medical emergencies while being in hOspital. Blood pressure too high or heart beat too high or infection very scary. Lost all movement being in bed too long and incontinence. gSwallowingb dangerous unable to jdoink properly. Hospital Gave us list nursing homes said they All would dbeeasier suitable for medical emergencies. Shocked how bad they were- people screaming, smelling of wee, no activities poor Lighting, little staff presence -couldnt believe it- why are these places so Bad!
Why? Because they are chronically underfunded. And no one gives a monkey for old, sick people. The least appealing of all categories of human being. NO ONE wants to know.
Brutal.
Agree with Jenny. But also they are not all terrible. My Dad is in an amazing one (CHC funded). Maybe do a bit of research/asking around friends and relatives for recommendations? Sorry this is all so hard xxx
It is very hard.
Not all nursing homes smell of urine and poo. My husband’s doesn’t. Rarely do we get a whiff, and that’s only because some poor person has had an accident. Soon sorted. On Monday, the activities lady had some more able residents at a table making Xmas decorations. Hubby isn’t able or interested sadly.
The visitors I have met, since hubby has lived there, don’t hate the home, just hate the fact that loved ones NEED to be there, none of us WANT it.
Yes, it’s true - there ARE nice, good homes! As in, they are as nice, and as good, as they CAN be, given the sad condition of the residents.
The ‘worst’ I’ve known was the secure wing of the care home my poor MIL with deep dementia was in, and that, really, was because all the residents there had deep dementia. So, the whole grim ‘side-effects’ were in operation - ie, double incontinence. They couldn’t help it, it was the nature of their illness - and they themselves, thankfully, had no idea what they had ‘sunk’ to, thank God - would have been dreadful if they had. The ‘ultimate indignity’ (and dementia strips ALL human dignity just about…)
The nursing and caring staff valiantly ‘did their best’ and overlaid as much as possible with air fresheners and so on. It didn’t help that this secure unit HAD to be pretty ‘secure’ by definition, because it was only for the residents who would have wandered off otherwise. But it meant that ‘outside space’ was limited (and of course only open in the summer months).
For all that, when you walked in, there was a strong scent of ‘disinfectant and the substances that required disinfectant’ …it gave the place a sad aura, I can’t deny that. But, as I say, the residents themselves had no idea - they were unaffected by it.
When she moved out of the secure unit, because she was immobile and could no longer wander off, she was able to be in the much brighter and ‘fresher’ main section of the care home. FAR nicer.
After seeing how bad nursing homes are better take dad home.very difficult to find good nursing agency. So many agency workers hospital scary - need to do subcutaneous fluids at home but lot nurses don’t do it again difficult finding agency…been nearly 3 months ago helping dad. Constant Mouthwash, coughing up phlegm trying to fish it Out, repositioning in Bed, changing his Pads, feedings one can take hours# hopefully with hood nursing again I’ll be able to have a meal and sleep in the evenings if only for 1 or 2 nights.
Dads awake normally all night coughing.just gotnimtoslerp. night observation lady screamed are hou awake abd i said he jystgone asleep then she slams door closed
dad came home tuesday 
Shaun,
Well done. I hope it all goes well for you. Your devotion to dad is outstanding.
Aw, that is excellent news. Dad is so lucky to have you.