Steve is going into the hospice this afternoon

[onlyjoking9329]

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

had phone call from OT she is going in to see Steve this morning and will see what needs putting in place for him to come home. The plan is for Steve to come home on Tuesday if he is calmer and sleeping at night.

Am glad that it is starting to work and that you had a lovely picnic! Your mac nurse sounds amazing!

If he is confused oj, I would possibly be wary of giving him an actual day that he is coming home.

great to read you had a better visit and are getting good support from the doctors and nursing staff. Will pray for Steve to come home as soon as everything is favourable. Hope you have a good day today

Thats good news OJ. I hope it all goes to plan. I also hope that you have managed to get some rest and are feeling ok. Thinking of you all xxx

Thats very good news Oj, I shall be away for a week, so won`t be on here, will be thinking of you just the same, xxxx

Thats good news oj. I spoke to my dad's mac nurse today and think they are truly lovely, special people. I'm so glad you are getting some support.
I hope things stay settled for Steve, and he can come home next week.
I will be thinking about you this weekend, lots of love to you and your family xxx

i agree the Mac nurses are wonderful, thou we were reluctant to get one MB talked me into it
The doctoe felt that steve needed to be given a date to aim for so they told him tuesday, of course as far as steves concerned everyday is now tuesday.
spoke to the OT and the SW today, the OT has sorted out a special mattress and cushion for steve which should prevent pressure sores and some other bits to help with his toiletting needs.
the SW is sorting out for a home carer to come in twice a day 7-9 and 3-5 to cover the school run and getting the kids off to school as steve can't be left alone. steve is still not settling at night and is keeping the nurses busy

That sounds like good support for you then, for when he comes home.

Does Steve know how confused he is or is he just constantly confused? Do you think he has a conception of what's happening?

he doesn't think he is confused and he insists that he sleeps all night every night, the nurses tell a very different story.

You do seem to have some wonderful support OJ, thats good news about the extra help with the children and school run etc. This might be a silly thing to say, apologies if it is but, is there anything they could give Steve to ensure he does sleep at night. I'm just a bit worried that you are going to be totally exhausted from manning the locks all night
How does Steve manage with disturbed sleep too? Does he sleep during the day?

Sorry for all the questions Anyway, I'm still thinking of you all and i'm sending lots of love xxx

Glad to hear of all the extra support and also the comfier sleeping/living arrangements for Steve. I hope this weekend is good to you OJ!

i will be speaking to the doctor later today about the non sleeping Steve. i can deal with the confusion and all the other stuff but the lack of sleep is hard.

They can do so much more in the hospice, than even the very best Mac nurses can manage. They can see what effect the changes they make have straight away and react accordingly

They sorted out dh's nausea and pain in the run up to Christmas, and it has made so much difference to us.

Having the extra stuff at home will make things better for steve, and easier for you, with luck.

Love, as ever, sent

OJ glad you're getting all this support. know what you mean re: lack of sleep - dd2 was up screaming at 1am with earache - after 3 hr trip to A&E all i could think about was sleep!
xxx

OJ will he still come home Tuesday even if his sleep is the same ?
As others have said you need sleep to function for all of you.
Hope the docs can help.

spoke to the doctor today they have sorted out his pain meds and his anti sickness meds, they didn't want to change too many things in one go, now they have the other stuff sorted they are hoping his sleeping improves if not they will give him some more sleeping med.

They did the same with dh.

Hope steve gets some rest soon

Rooting for you and yours as ever, OJ.

Lots of love,

xxx

He had a massage yesterday, which he enjoyed, he is still very confused and still insisting that today is tuesday, i think he thought i was lying until his brother arrived and he told him it was saturday.
the hospice oncologist felt that the ondansetron was adding to steve aggitation as it is something they have seen before.so he has been taken off it slowly.
they have dropped his MST morphine to 10mg every 12 hours the doc had him on 30mg before

So do you think things are improving? How are YOU feeling, OJ?

xxx

OJ looks like they going to get him sorted it will just take bit of time, but they so much better than docs at hospital when it comes to sorting out meds x

he is still anxious confused and aggitated, i am still his least favorite person cos he still belives that it is my fault he is there. every time i vist he says shall we be off then?
he is less spaced out than he was but otherwise much the same.
The Mac nurse said they were hoping for improvements and if they moved his meds around that may make a difference but if its all down to the tumour progression then we just have to try and control the symptoms best we can, he is on haloperidol and lorazipam which are suppose to calm him and reduce his anxiety, don't know if coming home will reduce his anxiety or not, will have to try it and see.

oh god, sweetheart, hugs to you.

You do know that you are doing the right thing?