My god.what a rollercoaster week. Nurse from chc came to see if ger had enough "A"s to trigger assessment. He did so I started to get ready for next few months trauma with all the rest. But NO.
Monday afternoon Macmillan palliative care nurse came prompted by our local hospice. Saw ger, spoke gently to him. He no longer speaks now so thumbs up and down to specific questions. Does not want resuscitation. But then she asked if we had CHC. No we don't. Well In that case I'LL FAST TRACK IT TODAY and she did. 2 hospice nurses came to wash and dress ger yesterday morn and whole thing starts today. 2 carers for 1 hour but 3 times a day. I can't believe it. They are from the agency that the hospice use and after initial 2 weeks if I'm not happy with them they'll find another one for me. Yippee. I am still holding my breath but wow. I also had 2 calls from CHC team at adult services and they didn't sound too pleased but I was polite when I said thank you for their help. My nose was growing at the time.
The nurse also said she'd organise a taxi card for me, get our gp to give ger a named doctor not just any old body, to mind his care and gave us a single point of access SPA within the hospice which is manned by a nurse from 7.30 am to 11.30 pm and can send a nurse out to us if needed at any time. After 11.30 pm lines are still manned but for advice or to call an ambulance for you with their special number. Well what do you think of that. I'm Still flabbergasted.
So the moral of the story is. If you have a local hospice please go in there and speak to someone first about your loved one a d hopefully get them on your case. Their intervention helped ger get his PEG earlier, the district nurses to come and now the CHC. Bloody wonderful helpful people.
I'll report this eve after my unexpected day today. All the best. Marie
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That's wonderful news. Just the sort of service you and everyone else deserves. It will make all the difference. Once you get use to all these people taking over your house! Don't underestimate how that feels. There will still be fights along the way, but hopefully, with all the extra care, you will have the strength to cope. Make sure you get out, during the time you have carers in, even if it's just a walk around the block.
Hi Anne. How are you keeping. Hopefully a light at the end of the tunnel of your new life.
I think the two carers who've just been, and will be back lunchtime, are going to be the same ones every day unless they're off. A great relief to hear that and the older of the two knew about convenes and standing hoists which I was surprised st.
It's early days yet but I'm going to ring the agency this morn cos haven't spoken to anyone there yet and see what I've actually been offered. No mention of respite though. Maybe a bit cheeky for that at this stage lol
Start as you mean to go on, I say. What's the worst that happen, they say no! But I can't believe they will do that. Remember, in all of this, YOU are still saving them money, as you still have to give full time care for the rest of the 24 hours, they are not covering. The Health and Safety police would not let one of the agency staff work without any time off, you should not be expected to either!
I don't know about a light at the end of the tunnel yet, but my eyes are able to see a bit more in the dark now! Not hitting quite so many brick walls, but they hurt more, when I do!!! So I am guessing that's progress.
Well done Marie, that's great news, it will help to make life a bit easier for you both. That's exactly what happened with us regarding CHC, apart from it was a district nurse who fast tracked it and it was done in 24 hours! I still don't understand why things are made so difficult when it's b----y obvious help is needed!
Like Anne says try to take a little time for yourself?
Thank you pat. I'm still in some kind of shock and not quite believing it's happening in case it all goes up in a puff of smoke. It is amazing what the right person can do to cut through all the b.......t
Fantastic news Marie! I personally cannot praise enough our hospice and ALL staff there! They are simply amazing! Finally you got what you have long deserved! X
in tears as i read your post. its just so good to see how it can and should work. our hospice is wonderful and i shall certainly seek their help when i need to.
Marie great big hugs to you!! I am so glad that someone has listened to you. This has to be the best we have heard? Apart from Sue, who also got help pretty promptly? However it should be like this for everyone?
Well done, as you have fought for things along the way, so about time someone fought for you?
Thanks Marie. I'm not sure what's going on with me apart from coughing my lungs out but all of a sudden I'm totally knackered. Whether it's relief or just no more steam left in the engine I don't know but woolly brain and exhaustion have just kicked in big time. I think I need Anne's remedy. Through the bottom of a glass. All the best
It is the same here in Alberta Canada. I can not emphasize enough just keep calling and eventually you will hit someone who can cut through the red tape and get you what you need. You have to weed out the ones with the canned answers they read off. I am happy for you. You will hit more snags along the way keep calling you will win in the end. This has been the story of my life in my job. I feel I have prepared for this all my life and now I have to advocate for us. They are counting on us giving up and paying for the care yourself. Don't ever give in to them.You are entitled but you have to fight for it.
Thanks Noella. It's funny that wherever people live in the world the same old c...p goes on. You'd think that some country someplace would help but beaurocracy is the same the world over I suppose. Anyway onwards and upwards till we collapse in a heap lol. Take care. Marie
Sounds great Marie, Ben has the funding but getting the care to benefit both of us is another thing, I'm holding my breath. It looks like your situation is very coordinated and must be such a relief, I'm holding my breath and hoping I get some decent support in the not too distant future. Enjoy your respite time you have long deserved it.
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