Steve is going into the hospice this afternoon

[onlyjoking9329]

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

i didn't take him for his scan as it was at 4.30 and i had no childcare i think it was a CT scan,Steve has asked if he could see someone about his MS so the oncology consultant said she thought it would be a good idea to have the scan to send to the neuro team, i agree it is a difficult situation, Steve is still very much feeling suicidal so they don't want to make him feel any worse, if thats possible.
i have noticed over the last week steves head is more mis shappen and his morphine has been increased.

Oj, sorry to hear that. You do notice very little thing change. I used to lie in bed at night looking at dh's head to see if it had changed at all. With him it wasn't so much the shape of his head changing as the appearance of his face. There was a visible droop on one side which tended to come and go depending on how well he was responding to the chemo.

Will the DN come to administer the morphine once Steve is at home?

I really do hope you get more memory making moments like yesterday, once Steve comes home. it was just lovely to hear about your picnic. Goodnight hun, hope you are able to have a good sleep. xxx

just checking in Oj, you are one very special lady, very kind of you to send his mum a card, just remember what goes around and all that, you have done your absolute best for Steve and i am sure he will know that.
i am glad you had a good mothers day i did think of you.
isabella sorry to see you have walked the same path as Oj and i am sure she gains great comfort in your words.
it is graet to see so much support on here.

Sounds like you're pretty handy with a drill in actual fact OJ, as the fittings seem to be functioning Sleep well!

Hi OJ. So pleased that you had a lovely time on mother's day. I've always been in awe of you, but to buy Steve's mum a card for him to give her puts you on another planet!

Izabella thankyou for your support I am sure it must be very dificult for you reading my posts must evoke all sorts of stuff for you. I did try to contact you via the messaging thing but it wouldn't let me.
steve was on morphine before he went in the hospice and they managed to get him off it but he is back on it now, I am able to give it him once he gets home, at some point they may fit him with a driver for his meds. The DN will become involved once Steve gets home.

Fourtyplus, I have always thought that I was on a different planet to MIL mostly I just bite my toungue as I know this is very difficult for her too. I am going to see if I can find some sleep now.

I hope you got some sleep Oj. Thinking of you. xx

Hope you had some sleep oj

OJ sounds like Steve is going to have a lovely room to come home too , just hope they get the 24 hour care sorted out very soon.
Take care

still no news on the carers Steve is getting fed up and wants to come the situation is not helped by his mum and brother who keep saying in front of Steve that he doesnt need 24hour carers or a hospital bed .
Steve room is looking good just need the bed and the blinds are being fitted on Friday.
the girls are fine but elliot is worried that his dad is not coming home ever.

OJ can you take his mother by the ears and drive her forehead into your knee?

OJ would you be able to take a picture of all the work you have done for Steve coming home,so that you could show him that you are ready for him.

I hope they get the carers are in place very soon.

Thinking of you OJ - sounds like the room will be wonderful. Hope the carers can be sorted quickly for you XXXX

BoysAreLikeDogs..................dont be silly................ OJ could hurt herself, what about a nice brick wall instead !

Thinking of you OJ. Still reading, still thinking, still wishing I could do something to help.

OJ, I have set up a CAT account and sent you an IM. Please, hun feel free to contact me any time.

Sorry to hear that Steve's family just seem to be in denial about condition and what he can manage. It really doesn't help you or Steve to hear such comments and it undermines all that you are doing in order to get Steve safely home. These things HAVE to be in place before this can happen. I just pray that the care package will come through in the next day or so.

Good that you'll be able to administer some of Steve's meds. Sometimes when the DN's are running late or if the need arises, its good to be able to give them yourself. Dh also had a driver fitted once he couldn't take medication orally anymore.

I'm so sorry that Elliot is struggling to believe that his dad is coming home. It must be so painful for you to see your children as well as Steve suffering through all of this.

Please make sure you get some more sleep tonight and know that many others are thinking of you. xxx

And we are Oj, such a desperate situation, the help should be there, you have so much to deal with, there part is the easy bit. Love to Elliot xx

Still thinking of you OJ, hope things get sorted soon so Steve can come home.
When my mum was dying of cancer (a few years ago), my dad looked after her at home. They had community nurses come in twice a day. Mum was also on morphine and had a driver fitted.
Dh, dd and I went down every weekend (we don't live near). Mum had fallen out with one of her sisters ages before but they managed to patch it up, which was good!
best wishes to all of you xxx

boysarelikedogs, i try to keep away from
MIL brick walls as can't trust myself
Well march is going to be a good month, march is the month that steve gets to come home.
march is the month when i got five winning p-bonds
what shall i buy with the £300?

Don't know what to post, OJ. Just sending you love and strength - you are in my thoughts all the time.

xxx

300 quid. Get a tazer gun and fire it off at MIL every time she gets on your nerves. (ooh it may run out - better get 2 ).
x

Thinking of you as always OJ x

Can you not get the mac nurses to have a word with MIL / Brother.....they appear to be making this much more difficult for all of you...perhaps they need to face upto things...however difficult that is....

You make sure some/most of that £300 goes on buying you something really nice OJ- totally frivilous (sp?) & gorgeous. Or some me-time doing something nice.

You deserve it

Tempting though it might be to get a contract out on MIL, don't waste your money!!!!

I can empatisue with you about the inappropriate messages from relatives. This happened last year with my mum, when a relative kept agreeing with her about why was she still in hopstial and couldn't understand the benefit she was getting from the treatment in hospital - the fact that that there are few/zero (at her age) facilities for treating head injury patients in the community just didn't occur to him, let alone the strain on my dad that mum being home full time would cause.

The end result was that the hopstial ened up having to discharge her as she was no longer a willing patient, so they couldn't constructively treat her any more and my dad was left to look after her at home and her recovery was set back significantly (if not permanently )

And of course, said relative wasn't there at home 24 hours for dad

I'm really sorry that your MIL and BIL are in such denial. It's not helping your or Steve.

Ooh congrats with the 300 quid

How about a massage/reflexology session each week? Don't think of it as spoiling yourself.. think of it as essential - you are the glue that is keeping the whole family together.