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Overnight hospital carer for dad with parkinsons - Page 4 - Carers UK Forum

Overnight hospital carer for dad with parkinsons

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Oh, Shaun, that's a horrible response from the hospice. Did they say why? It's an indictment of the NHS (one of many, alas), that your father can't be somewhere more 'peaceful' and 'appropriate'.

As for the chaplain, I guess 'form a queue'? He can't be busy ALL the time?

Re the heat - I hate the ludicrous overheating of hospitals! When I had to be there once overnight (very pregnant), I couldn't bear it, and found the family waiting room, opened a fire door, and sat out there in the middle of the night! It was winter but it was the ONLY place that wasn't like a furnace. Absolutely ludicrous!
Wondering if I can get private carer from an agency to help erelieve a few hours :o :lol:
Hospitals used to have something called The League of Friends, which consisted of volunteers helping those in hospital in various ways. I don't know what the modern equivalent is, but surely there is 'something'???

If he has Parkinsons, would the various Parkinson's support charities be able to suggest something, or even supply someone local to sit with him for a while??

It's a grim, grim vigil, and I remember it from my husband's time in hospital.
The League of Friends ?

Internet search using those four words ... post code lottery at best.
Spose dads lucky to have family. where are the other patient famillies and friends to help them. ward usually empty visitors. no one has any time....
Each day different for dad as lots of agency and information doesn't always get accurately handed over. Requiring I thought there would be cleaners looks like his room hasn't been mopped for ages...
Shaun, that's not acceptable. Ask to see the hospital housekeeper, might be called Facilities Manager.
Hey Shaun

Sounds a really hard situation for you. Sorry if this has been explored before, but is there anyway he could go home with family/carers coming in? Or could a nursing home be an option? Does he have to be in hospital? As it sounds as though his needs are quite high he might be eligible for Continuing Heath Care? This can be at home. Has anyone from the hospital explored this with you?
Shaun, I agree.

Apart from the fact that what the hospital doctors seem to want and expect is for your father to 'die as quickly as possible and get it over and done with so they can get his bed back' (sorry if that is unfair on the doctors, but it does seem to be what is coming across from your posts describing their attitude!), what IS 'wrong' with your dad.

Why is the hospice saying he isn't eligible for them? Do they therefore think he is NOT dying?

But I do think that EITHER he is 'dying' and therefore eligible for a hospice, OR he is NOT dying, in which case, he can't just go on being in hospital indefinitely!!!!

Are the doctors saying that he MIGHT 'get better' to ANY extent at all? Or do they just expect him to vegetate 'as is' and if so, for how long?

He seems to be trapped in a no man's land where no one really has a clue what is 'likely', and everyone is 'washing their hands of him'. That is jut not acceptable.

What medical care DOES he need?

My understanding from my own husband's end stage was that if he needed to be on an intravenous drip, he HAD to have a nurse 'on call'. So that would mean either a hospital, a hospice, or hiring a private nurse to be with him at home.

So, does your dad NEED to be on an intravenous drip? If he doesn't actually NEED it (what is it dripping into him, by the way?), then that gives you much more flexibility. He 'could' come home, with district nurses coming in daily??? Also, do ring round hospice charities that MIGHT also do 'hospice at home' (that was what my husband had). Basically the hospice nurses supplemented the district nurses (they worked in cahoots), and were also 'on call' for emergencies (eg, my husband fell out of bed once in the night).

If your dad is on some kind of intravenous painkiller, then usually they can be administered via a sub-cutaneous syringe driver, which is a needle permanently inserted just under the skin (arm, hip, wherever) by the nurse, but which then stays there, attached by a short line to a small box with the drug vial in it, that seeps into the system. It does NOT need a nurse constanatly there (both my husband and MIL were on one at the end).

Finally, IF your dad is still regarded as having legal capacity, he can discharge himself irrespective of any risks to himself.

My friend's mother was in hospital (where she'd caught MRSA, sigh), and was discharged basically 'sent home to die'. She was taken off all her meds (for heart diseases), and came home. The docs gave her two weeks.....she lasted, very well, for nine months, and died peacefully at home (with a Marie Curie nurse, as they don't only do cancer!).

You've been now with your dad a LONG time in hospital, and nothing seems to be 'happening'. If he isn't going to die 'any day soon' surely it is possible for him to get out of hospital, whether that is to a hospice, or a nursing home, or even 'home home'.....????
PS - surely your BIG 'pressure point' on the hospital to 'sort something else out' for him, is that surely they MUST want his bed back!!!!!??????