Devastated

[Debbieann]

Just when I am feeling just a touch happier,the hospice say he's had his 12 visits, talk about pull the blanket from under you. Where do I go now xxx

[NannaB]

Our hospice said the same after 12 weeks. Apparently with neuro patients they do 12 weeks there and 12 weeks break. After his 12 weeks off he went back again for another 12 weeks. The next time the break came, they said they would let him keep going without any more breaks and this is his 3rd year. During the break we had hospice at home. Someone came to sit with him for a couple of hours so I could go to my art class. Ask at the hospice if they can provide someone to sit as you need the break. They may also tell you he can go back after 12 weeks. I do hope so.

X

[Heady]

I agree with NannaB. S's Hospice, is a 12 week course. We were then assigned a community nurse, who visits regularly. Then she referred S back to the hospice for another course. He has had 4 sets of courses, not sure if she will refer him again, but I am working on it.

The plus side, is the community nurse visiting us. If you are lucky and get one, she/he WILL be able to help you with getting help, advise you what to do. Mostly importantly, be able to talk to YOU, find out how you are and how you are coping. Ours was the person who got the CHC funding assessment.

So all is not lost, in fact a lot more positives could come from his time away from the hospice. They will NOT be discharging F, you will still be looked after. I know it's devastating, been there, got that scar, don't give up. Get busy writing your list of problems, you want sorted and the reasons why F should be referred back as soon as possible.

Sending big hug and lots of love

Heady

[Yvonneandgeorge in reply to Heady]

Debbie I hope you can sort it out, is there no centres around were you are that he could go to a couple of days a week? George goes twice a week, gives me a break, our DN is lovely so helpful we are really lucky. Big hug Yvonne xxxxx

[gypsywoman1947]

Two more weeks left and I'll be in same boat , it has been a hugh help and a lovely break for me too. X

[abirke]

That's why I love this site...just when the blanket is pulled from under you some is there to catch you...NannaB and Heady

Thank you girls

[Amilazy]

Hi M had a number of these 12ish week daycare rotations but I had to remind the hospice that M still required another set of daycare. You may need to discuss with them about daycare capability.

We had to change hospice as our closest one was volunteer led with access to nurses on the residence side in emergency only so they were unable to provide cover to look after M when she could no longer feed herself.

We had to transfer to a nurse led hospice daycare centre in Llandudno about 40 mile round trip twice a day but they were great in providing respite as well as daycare on a flexible level. When M moved into the nursing home they also provided them with specialist advice on M's special needs.

Do not give up on daycare just keep in touch with the hospice so they allocate you a space as soon as your 10-12 weeks is up.

Hope you get some time to yourself, if not already, try Crossroads or Marie Curie Nurses for a daytime sitting service, usually through a GP's recommendation.

Good luck Tim

[Kevin_1]

Hi

That's a tough one.

I'm sorry I have forgotten. Are you on continuing healthcare.

If so you can expect to get about four weeks respite with a nursing home.

You must have respite. We all need it.

Warmly

Kevin

PS - We were really struggling - CHC said yes to respite - but there were no beds - we just pushed in through the stormy exhausted time and now are back in blue skies - for now. Nothing like contradicting myself.

[Julieandrog]

don't panic is what you do deb! your gp can re refer probably after three months with reasons why he needs to go back, sensible really as they have to share resources. have you reffered yourselves to adult services? they will assess your needs and hubby's the least you will get is three hours flexible break for you good to be on their books , when rog cascaded down rapidly they were incredible, fast tracking chc etc their number is usually accessed by some kind of hub system with a generic number best of luck and let us know how you get on.

julie x who also had a crap day yesterday!

[Katiebow]

Oh dear Debs, so horrible when you rely on that break for your own sanity. It is also good for them to be in a safe social environment where they get a bit spoilt by staff and volunteers. Ben has just started back after his hospitalisation and was dreading it as things have changed considerably for him and he feels embarrassed that he needs help with eating and toileting now. He went back for my sake and actually quite enjoyed it once over his embarrassment, I spoke with the nurses as to his new needs and they reassured him that it wasn't a problem. I hope you get something sorted soon to help keep you sane and able to cope.

Love Kate xxx