Steve is going into the hospice this afternoon

[onlyjoking9329]

i know he needs to be there and hopefully they can get him more stable.

oh sweetie, that's hard
x

it happens most weeks, we lost two just before christmas one was only 29

wrt to end of life care, how does it rate? do people generally get what they want - either at home or in a hospice?

well sometimes thing move so fast that it takes people by surprize.
the guy that died today had a massive seizure.

OJ, I'm going to have to go through all this with my friend although it's still in the future at the moment. Do people with terminal brain tumours all tend to become unaware about what's happening with them? OJ you linked to the brain tumour site for me before but I didn't want to look at that point as we weren't sure of my friend's diagnosis.

Not sure whether to be asking you about this on your Steve thread either.

I think we were incredibly "lucky" in that dad was unconscious, incredibly peaceful and had already discussed a DNR with mum which she totally agreed with. I wasn't there, but saw him a few hours earlier. A week before he'd opened his eyes and did recognise me momentarily and I'd warned my daughters (6 and 3) that he wouldn't look or seem the same to them.

they have a DNR policy at the hospice.
the link to the brain tumour forum is here
share.macmillan.org.uk/share/Forums/default.aspx?topic=1000524&no&page=741

good night oj, sleep well. x

well i had a phone call from the SW today who says she cant say how long it will take to set up the home carers, she went to see steve this morning and thinks it might be best to keep him in the hospice until the care package is in place, she can't give me any idea on time frame for this to happen.
i have tols SW that Steve needs to come home tomorrow he is very upset and stressed about being in the hospice and the one thing keeping him going is that he is coming home tomorrow.

haven't seen you for a while OJ
sorry this is so horrible for you all
big {{{{{{hugs}}}}}

Oh OJ - I'm so sorry to see your latest post! How unhelpful - could the macmillan nurse or your GP do some pushing for you?

OJ that's very distressing for you and Steve. I hope it gets resolved.

OJ, I'm so sorry, as if you don't have enough to battle against. I know how much you want to honour Steve's wishes to be at home. My husband Mark was the same, he hated hospitals and wanted to be at home.

Could the Mac nurse or Dr that Steve is being treated by at the hospice also have a word with the SW to spur things on? From what I can remember it was my GP surgery who put my home care provision in place. I never had to deal with any SWs. I hope the care package comes through very soon.

It must be hard for you to hear of so many others dying so young of this c**p disease. My husband was only 35. I am almost 3 years down the road now, but please I mean it if you ever need anyone to talk to who has been there, I would love to just be there for you. xxx

OJ I work for social services in the rapid response team. We provide home care services to people who for one reason or another are at a point of crisis. We also facilitate discharges from hospital/respite etc.
It's a stop gap service for people who need a service to start the same day as they are referred.
As far as I know there is a similar service in most of the country. If so this would enable Steve to come home with this service until your social worker can set further services up.
Your mac nurse may not be aware of this service but the district nurse may do.
The referral criteria may differ to ours but it's worth a try.

sorry SS are dragging their heels, hope that something more satisfactory is arranged tomorrow.

Not been about for a while, sorry, but spotted this and couldnt walk by without posting.

(((((((((((((((OJ, the kids and Steve)))))))))))))))

Px

the hospice SW did an assesment on Steve and as carers assessment on me, she said that she has to do a SNAP assessment which covers 11 areas to access NHS funding if Steve qualifys under that then shecan access agencys who can provide care but then the issue of funding ect she thinks we might get funded but doesnt know if we will get enough hours funded so we may need to top hours up. She has asked crossroads if they can offer any more hours, so we will have to wait and see.

it is a late time for you to be psoting

i hope you are ok

OJ - I am so sorry that things are difficult and take so long to organise, It does not make the situation any easier for anyone.

You and family are in my thouhts

OJ - I'm so sorry to hear that you have yet another hurdle to cope with.

I am ok just a mixture of feelings excited that Steve is coming home I have missed him so much but anxious cos not sure how he will be and if we will cope. His family are not beingvery helpful which has upset me.

I am ok just a mixture of feelings excited that Steve is coming home I have missed him so much but anxious cos not sure how he will be and if we will cope. His family are not beingvery helpful which has upset me.

Thinking of you OJ. Lots of love as always xx

thinking of you all today Oj i hope steve is home and is more settled.
sorry to hear his family have upset you.
(((hugs)))