OJ 's HUGS, RUM & CHOCCIE SUPPORT THREAD

[bossybritches]

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elliot likes to do room. Service at weekends. The bill story made me smile, Steve says lots of odd things and I struggle to give him an answer sometimes. I have had to brush up on my negotataion skills a lot as he always says he doesnt needs a wash or his meds as he says he has already had them, luckily having 3 kids with Utism has taught me a lot about having lots of rum patience.
I am still not sure how we are getting throu the days I still dont know how I am holding it together needs must I guess.

Hi OJ. xxxxxx

Hi OJ, it is beautifully sunny here so I hope that it is good weather where you are.

Sorry to hear Steve is not so good. When my dad was in hospital after his first heart attack, he was rambling away about all these women he'd had affairs with all over the world . Think illness can distort things rather a lot.

Hope kids have a good day with the respite family. Can you get to have an hour with a mag and a glass of wine in the bath? Always makes me feel a bit more human. I hope Steve wakes up later for a dose of trifle.

You are doing more than hold it together - you are bloody fantastic! I'll check in later to see how you are all doing.

Steve is still asleep. He woke up at 11 and had a small drink, he doesnt seem to be in pain which is good. He hasnt been for a poo since wednesday which is a worry he is not really eating or drinking much, the Dn examined him yesterday and said she didnt think he had a blockage she has given us some movical but he needs to. Drink plenty for it to work. Mac nurse has been she thinks he would be better on another laxative but will review it on tuesday she thinks his steroids may need increasing she will talk to hospice consultant on Tuesday and see what she thinks. Debs didnt mention time scales and I didnt dare ask.
I am going to have a soak and a snooze whilst Steve is asleep.

Enjoy the soak and snooze OJ !

I think it's the meds that cause the constipation, my mum was the same just montior the laxatives as my mum went the other way when they used them and it really wasn't very dignifying Sory if tmi just wouldn't like Steve to have to go through that on top of everything else.

With time scales they won't tell you if you don't ask and even then it's only a guess. My mum survived 3 weeks more than what Christies said. You will know when it's coming to the time though.

Hope Steve get's some more awake time later.

Hi OJ, hope you had a lovely soak and snooze. Thinking of you, Steve and the children. Lots of love as usual xxx

Enjoy the soak and hope the kids have had a good day out. I made your choc orange cake and it was delicious.. it didn't get time to cook down tho'

i had a soak but couldn't snooze, steve is sleep asleep and unresponsive to noise. even ripping the lid off a trifle didn't rouse him

OJ haven't posted on here before but have been thinking of you and checking for updates. Glad you managed your soak, and that your children are getting a day out. Hope your evening is as relaxing and stress free as possible for you all.

Oh darling. I always check out your thread looking for the trifle count and how much rest you have had. Glad no mention of the out inlaws in your last few posts. Take care, thinking of you, as always.

Hi OJ xx Hope the dc's had a good day out today. So sorry to hear that Steve is getting worse You are doing an amazing job just getting through every day. Hope you get some awake time with Steve later xxx

Oh OJ, hope you get some awake time with him later today xxx

steve woke up and had trifle followed by choc orange cake
he is asleep now. the kids will be back at 7 they have been playing on Wii fit at respite carers according to the text they are loving it, they don't yet know i have brought it for them to play here

Great OJ. Glad the choc orange cake and trifle count today is good. Well done for getting your hands on a wii fit for the kids!
You can't get anywhere near one round here

Did the box trifle pass muster?

Hi OJ, just sending love and glad he's had cake and trifle xxxx

some mates turned up last night with the Wii fit for us i couldn't get one locally.
Nab your box of trifle is as yet unopened, it has pride of place on steves bedside table as i am not allowed to move it let alone open it, i used some of your lovely bubbles today
Steve was getting very angry and aggitated early he was swearing and shout at me cos he is not happy here in paris he was being verbally abusive to the carer too and very unsettled, he has had some lorazepam to calm him down, it seems to have worked as he took his tablets without any abuse or chucking them at me.

at Steve not letting you open thr trifle.

Glad you like the bubbles as I had hoped to get posher ones.

Sorry Steve has been agitated today.

Steve has a teddy standing over his box of birds trifle nobody is allowed to touch it.
The Mac nurse says that she thinks steve will continue to sleep as much as he has been and be less responsive.
he seems to have lost control of his bladder too, i don't know if that is down to his confusion or not, the DN did suggest a catheter but he would just pull it out.
our chocolate orange night lady is here again tonight and as Steve is asleep i suppose i will have to help her eat the chocolate orange

Good morning OJ, hope you and Steve had a nice restful sleep. I think loosing control of his bladder is part of the illness, we had this problem too with my Dad and we thought he would pull the catheter out but in his confused state he did not really know it was even there. After he lost control of his bladder we only lasted about a day before we had to catheter him as the work involved in cleaning him up was too stressful for him. Hope you all have a nice day. You are an amazing woman and you should be so proud of how well you are looking after everyone {{{hugs}}} x

Another one looking in to see if you are ok, in so far as you can be ok, in a situation like this.

I did sleep well until 5am phonecall from night staff, Steve now not able to weight bear and she couldn't get him to the commode couldn't get him to use the bottle either, he got aggressive trying to hit us Steve has always been placid and so gentle it is so bloody sad to see him like this.
I have had to give him lorazepam to calm him down.
he is going to need a hoist I think, typical that it is bank holiday weekend.
I so wish Steve didnt have to suffer like this

Oh sweetheart, I really do not know what to say to you.

Just hold hard to all your memories, the agressive Steve is not Steve IYKWIM.