Can someone tell me about hospices and what to expect?

[oneofsuesylvesterscheerios]

My dad has got an undiagnosed condition that is similar to motor neurone disease. He's been in hospital/intermediate care for the past 3 months and came home last week but has seriously deteriorated and it's only a matter of time before he needs help with feeding etc.

My previous thread is here.

So now the GP has said what we all knew really but hadn't voiced : that this condition is going to result in his death, sooner or later, and as it has only taken 8 months from him being fit and healthy to wheelchair-bound and hardly able to use his hands, I'm not that hopeful of anything past 6 months to be honest. The GP has now referred us to the local hospice and a nurse will be in touch next week. But my mind is racing and I don't know what to expect.

At the moment he has care twice a day which he pays for. Now they have confirmed that he is sying, will he have any additional care or again will he need to pay for it? Sorry if these seem like stupid or crass questions, but he will be wondering this as well and I'd like to be able to speak to him about it tomorrow.

Hello Oneofsues

I am sorry to read about your dad,

This piece of advice is based on the assumption that you live in England as I don't know how Wales or Scotland does this,

but

With regards to paying for care, you will need to ask your father's district nurse about making a fast track application to have your father assessed for something called 'continuing health care eligibilty'
In a nutshell, if he is awarded this then the local PCT (ie the NHS) will have to fund his end of life package of care, and it will not be means tested.

Depending on your local PCT they may change his 'care provider' to one that they have a contract with.

I work in a related feild and think that it's disgraceful that families have to navigate all this nonsense whilst gripped with devestating news. and my heart relly goes out to you.

Hopefully the hospice team should be able to guide you too.

sending you best wishes x

Sorry to read your news.

With regard to your Dad's diagnosis - or lack of one. You could go and see his GP or ask to see the consultant and talk about this in more detail. They may need a letter from your Dad authorising them to discuss it with you. This could help you find out a bit more about what's know or not known. It seems like as well as all the prctical questions you've got a lot of things you need to know about why this is happening and it is important to try and answer those if you can.

oneofsues

aplogies I'm sorry i didn't read your latest post carefully enough
The nurses will not wash and dress your dad,as the carers will continue to do this but instead will take care of any medical needs such as taking care of any dressings, reviewing his medication and pain relief, checking for pressure sores that sort of thing and this is always free.
they will arrange prescriptions through the GP usually
If he has to have a catheter they will keep an eye on it, and may change it, but the daily carers will empty the bag and fix a new to his line.
if he needs any more equipment such as hoist to get into an out of bed, or a hospital bed they will arrange this and may liaise with social services to arrange delivery.
in our area the local hospice employ nurse specialists to take care of their patients, and Mcmillan nurse is usually a generic name for this type of nursing , bit like 'hoover' iyswim

I hope i haven't overloaded you with so much jargon.

again, best wishes

This is all brilliant advice - thank you so much.

The hospice still haven't been in touch, much to the surprise of our GP, who said they usually act very quickly. He has been chasing it again today.

The GP is fabulous - he said to dad he wanted to see him again this week but couldn't fit him into his house calls schedule yesterday and also didn't think it would give him enough time... so he went round to dad's when he had finished work and spent half an hour of his own time with him until the carers arrived to put dad to bed. Just brilliant.

Age Concern (or Age UK as they're known now) have also been great. They have helped me navigate the legal stuff and have arranged for us to see a solicitor at a reduced rate to sort out extended power of attorney. And another lady there has been helping me with the attendance allowance application as they all think dad should now get the higher rate.

the GP had to give us a form that confirmed dad's condition is terminal. Apparently the govt. 'allow' you 6 months to die after filling in the form, which the GP said is patently ridiculous as it's usually so hard to give an 'accurate' prognosis even in the most seemingly clear-cut of cases. Even so, the timescale of 6 months is still one that seems very scary. But I'm trying to be positive.

Again, thank you so much for the continued good wishes and support I've received on this tread - it is definitely helping. I'd gone off MN a bit recently as I thought it was getting a bit aggressive; this thread has completely restored my faith in most MNetters.

I think you don't actually have to die within the 6 months, at least that's how it was explained to me-but it allows access to benefits which ime get organised very quickly.

Thanks for this thread. I've been avoiding thinking about this stuff, but it's good to hear about all the positive experiences. My best wishes to you and your family.

Sorry to hear you're going through this too, wahwah. I'm here if you feel the need to post your thoughts.

The hospice nurse rang me yesterday and we're meeting with her on Monday round at Dad's house. As expected she was very easy to talk to and listened well to all my ramblings. I think it will really help to have the hospice involved now.

Oneofsues

Thinking about you and wondering how you are getting on.

This may sound a little 'wierd' but in some ways knowing I had a limited time with my dad was blessing as every time I was with him really counted as it could no longer be taken for granted.

We never did have the big Hollywood movie style conversatons but we were both comfortable with that, just appreciated our times together doing nothing much at all apart from holding hands, hugging, chatting about the every day bits of life..

In some ways I think it was easier, for me at least, than having to experience a very sudden death.

Thanks, iwas.

We met with the hospice nurse yesterday and, as expected, she was lovely. She stayed for over an hour and also spent some time with dad on his own. She has made two intial referrals for us, one for the family support which dad is keen for us to have as we want to support the dds as much as we can. The only time dad broke down was talking about dd1 not wanting to ask us questions about grandad, as she's scared of hearing answers she doesn't want. That was hard. Dad has not shown one ounce of 'poor me', self-pity or bitterness throughout this, and the only things that upsets him is seeing us or the dds upset or affected in any way.

The second referral is to the complex disabilities nurse at the hospice who deals with patietnst with neurological conditions. Our nurse thinks that it won't be too long now before we'll need constant nursing care and at this stage it comes out of the hands of social services and back with the nhs, which means it won't be means-tested any more.

We'll hear from them all in the next few weeks.

Wd also got a call from the QE in Bham yesterday saying that they (finally) had a bed for dad, so he's gone off there for his nerve biopsy, to see whether we can get a diagnosis or even just give us more insight into his deterioration and what the prognosis might be.

Very very hard. But I feel strangely relieved? / calm?, compared to how I was Sunday night (almost no sleep, completely wound up, etc).

Hospice nurse then rang me later to tell me she'd made the referrals and she said 'I can see why you all think the world of him.'

Good to hear the hospice nurse is sorting things out for you and your Dad.

Knowing you have support and somebody to advocate for you all is so important.

best wishes