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Carers UK Forum • Overnight hospital carer for dad with parkinsons - Page 5
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Re: Overnight hospital carer for dad with parkinsons

Posted: Wed Nov 28, 2018 1:23 am
by Shaun_1811
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.

Re: Overnight hospital carer for dad with parkinsons

Posted: Wed Nov 28, 2018 1:32 am
by Shaun_1811
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.

Re: Overnight hospital carer for dad with parkinsons

Posted: Sat Dec 01, 2018 12:19 am
by Shaun_1811
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

Re: Overnight hospital carer for dad with parkinsons

Posted: Sat Dec 01, 2018 10:53 am
by jenny lucas
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??

Re: Overnight hospital carer for dad with parkinsons

Posted: Sat Dec 01, 2018 10:57 am
by jenny lucas
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....

Re: Overnight hospital carer for dad with parkinsons

Posted: Sat Dec 01, 2018 11:27 am
by Gosport Nancy
jenny lucas wrote:
Sat Dec 01, 2018 10:57 am
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 actually 'kill' a patient, or even administer so many meds (eg, opiates) that they 'die'...

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.

Re: Overnight hospital carer for dad with parkinsons

Posted: Sat Dec 01, 2018 4:58 pm
by jenny lucas
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'!!

Re: Overnight hospital carer for dad with parkinsons

Posted: Fri Dec 07, 2018 12:43 am
by Shaun_1811
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.

Re: Overnight hospital carer for dad with parkinsons

Posted: Fri Dec 07, 2018 7:11 am
by bowlingbun
Shaun, ask for dad to have an NHS Continuing Healthcare Assessment asap. Free nursing care at home.

Re: Overnight hospital carer for dad with parkinsons

Posted: Wed Dec 12, 2018 11:28 pm
by Shaun_1811
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!