Steve is going into the hospice this afternoon

[onlyjoking9329]

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

and are you getting the support that you need?

OJ you just have to hang on to what they were like before the real Steve doesn't feel as you say and hopefully if the meds stabalise him he can come back. That's the tough part of the type of cancer he has, it changes them into a different person. Massive hugs to you.

well i think it is the right thing for Steve, he wants to be at home, but if we go back to being up and on lock duty 3 times a night then we are going to need some more help, not sure a night sitter would be any good cos he wakes up anxious looking for me and as the nurses tell me he is very persistant in his search for me.

Well, we could form a MN lock duty rota!

Whatever, you must get your sleep! You are coping with a heck of a lot OJ, you need your rest more than anyone!
Have you managed to sleep ok while Steve has been in the hospice? Do you feel recharged? Or, is that a silly question?

you are right OJ it is really hard but you have to think about yourself and the kids too. We never got to bring my mum home but it was the right decision brain tumours are different to nursing someone with another type of cancer at home.

You have to rest, because unless you ae rested you can't keep going for everyome else.

there have been times when I have to sleep in the spare room. dh's sleep is disturbed, but he can rest in the day, and I can't.

It seems harsh, but in the end it comes down to survival

i know i need to be able to sleep, i wouldn't be any better off in another room cos steve comes looking for me, plus he can't be left alone when he wakes, he still doesn't understand how dangerous it was to try and warm his hot water bottle up under the electric grill. if he is still unsettled at night then i will see if he can have stronger sleeping meds.

Oh hell!

Yes, he needs to be somewhere safe.

and you do need to rest.

I'm having a stroll in the park in comparison sweetheart.

I just wish I could make it right for you

and thats the thing whilst he has been in the hospice he hasn't had access to grills kettles coal fires and other stuff.
i dunno about your situation being a walk in the park thou MB

well, I'm onlu up to the armpits in crap!

IYSWIM

He needs to be safe.

you need to sleep, and so do the kids

well i think we can both identify the brown smelly stuff
i am still suffering with whiplash after rather nasty car smash 5 weeks ago, the kids are still stressing every time we go out in the car it never just rains does it.

(((Onlyjoking))))

OJ, just to hug you and give you my support. You are a very brave woman, must not give up now. Must trust nurses and doctors and think you have done all you can to help your DH. XXX

Hi OJ,

I was just catching up on how you & Steve have been doing. Honey, you need more rest. Could you not ask your hospital, the GP or even the hospice to arrange a night carer as well? You can't be up with Steve every night. You've done amazingly well but you need your rest too. Is there anyone who could phone around on your behalf on Monday to get the ball rolling? You need someone who'll be insistent & fight your corner. My GP arranged night carers for us and it really was a Godsend. My Dh wanted to continue to be at home as well but I knew that I had to have things in please in order for me to cope. We had morning carers who came at about 9.30 am and night carers who came at 10pm and stayed until 7 the next morning. Is there anything I can do? I'd be more than happy to help. xxx

Hi OJ I too was just checking to see how thing were.

I konw others have said it but is there no-one else who could help out when Steve comes home, especially at nights.
You mentioned Steve's brother could he not do a few hours to start with while you get some kip???
I do hope sorting out Steves's med's make a difference and he's more settled.
Will be thinking of you this week.

Hello MB, hope your dh is doing ok xx

You are both amazing strong women, I was feeling shit this weekend about my dad, and listening with what you both have to cope with makes me realise I have to pull myself together!!!

Sooooo I have signed up today for the race for life, instead of moping and feeling a bit down !!!!!

Love to you both and best wishes xx

just checking in to see how things are oj.

good luck for Tuesday.

my sister had some overnight nurses via Marie Curie cancer care when mum was still at home with her. They came oround 10pm and stayed till 7am. They didn't know how many nights until the start of each week, but they were getting cover at least four nights out of seven. I think it was the palliative care nurse from the hospice who organised it, but it may have been the home care people, I'm not sure.

thinking of you all {{{{{hugs}}}}}

i have checked out the Marie Curie cancer care nurses and they are for when treatment is no longer an option so something to bear in mind for future use. i am seeing the mac nurse first thing on tuesday so will talk to her about options, it is hard to know if steve will be ok when he is at home we can only try it really, his mum and brother will sit with him but don't feel comfy helping him have a bath or go to the toilet, last time his mum sat with him she phoned me three times to talk to him and calm him down as he was anxious as he didn't know where i was.

OJ do you know what to expect next? What will happen with his symptoms etc.?

I found it touching beyond words when you said a few posts down as to how Steve looks for you in the night despite what the nurses say. It shows how much he knows, deep inside, that you are caring for him and that he can trust you.

Oj- just checking to see how things are. There is so much good advice here and compassion. My heart goes out to you; I hope that the kids get off to school ok tomorrow and that the hospice continue to help you all find the best way forward. Take care of yourself and shout it you need help.

i think it is just a case of managing his symptoms now.
i know what lies ahead from other people on the brain tumour forum.
the kids have an inset day tomorrow and i have to wait in to take delivery of steves mattress and stuff.

i hope that Steve coming home works out OK, and that you can get plenty of support for this.

praying that all goes smoothly with the deliveries and that they turn up as soon as you are ready for them and not a second earlier or later!

OJ i have a read a few of your threads and just wanted to say you are amazing if night carers are difficult at the moment could you get a sitter in th day so you could have an afternoon nap better than nothing

does the other forum help oj? I remember when we talked to a nurse about my dad's condition (he had alzheimer's and died of pneumonia) it certainly helped me knowing more about what was likely to happen.

lots of love, x

the other forum is helpful but it is a hard place to be, one of the guys died this morning and lots of people are much worse than Steve.
i suppose the blessing is that Steve doesn't know what lies ahead.