Looking for the silver lining

please-let-me-be-lucky

Oh Hun, I'm so sorry to read that. I've felt like running away countless times and usually lock myself in the bathroom for a little cry (or vent on my diary!).

Are there no friends/family/neighbours/nurses who could help you look after DH, not only when you are at work but also to give you the odd break? Xx

brizzledfw

Hey Sun Addict

Found you by chance this eve as I was watching Glastonbury...gripped by your story and how amazingly strong you have been and are being. Phenomenal....AND...you are managing to carry on debt busting at the same time. I would be in bits..but you are debt busting, working, carrying on supporting DD, DS etc...awesome.

Really hope OH starts to feel stronger soon, less depressed and scared and docs are able to get the sodium levels etc up consistently. Have subscribed and will drop in to cheer you and your OH on your way to better times!

Hugs and loads and loads of love

Brizzle x

Sun_Addict

Thanks both of you

Lucky I know you are experiencing a similar-ish situation so know how I feel. Coping with someone with a brain injury/disorder is tough. And you are looking after your little boys too so I take my hat off to you. They look like the person you know and love but don't act like them. It's scary. Unfortunately there is no one else we can rely on to give any useful help as everyone else works too. DD will be there until she starts work at 12 and I'll keep phoning him to check he's ok until I get home. Originally I was told he would be given an alarm to wear round his neck and that a carer would call round just to check he was ok but that seems to have disappeared.


Brizzled thanks for reading - I'm doing nothing special I just find by keeping some sort of semblance of normality it helps me through the rough times. The debt busting is a way of diversion. Believe me I could quite easily go to pieces but it wouldn't change anything or help matters. Sometimes I wonder if it's really hit me properly yet. Also been watching Glastonbury by the way.


Anyway I'm off to bed now as very tired. Told Mr SA he's going out in his wheelchair tomorrow whether he likes it or not! Didn't even get one number on the Lotto - oh well!

Buffythedebtslayer

Just dropping by with hugs and vibes of support xxx

debtfreewannabe321

I've no words of wisdom or advice but want you to know I'm here cheering you on from the sidelines. I really hope things start to get a little easier soon xxx

please-let-me-be-lucky

SA, I know you have said before about being on contract and therefore having to take leave as unpaid, but it might be worth having a word with bosses about compassionate leave or similar? At least reduced hours. Or take the unpaid leave and leave the debt busting for a little while to balance the books? Or eb@y/work from home to help make extra.

I do understand that work will provide a welcome break for you. It does for me and for those 3 hours I enjoy just being me rather than Wife/Mum/carer. However, at the minute you might just stress when you are there about what is happening at home and ultimately make yourself ill.

*Robin*

Hello Sun.A, :hello:

(((hugs))) and well done for recognising your limits - needing the respite of work to balance the scary responsibility you now have at home.

That's absolutely fine - you've got to keep sane and healthy yourself, but you're going to have to push a bit to make it work safely for MrSA.
Have you got a file yet, with details/'phone numbers of all the different support agencies involved in MrSA's care? (if not; make your own! Add notes of the best time to call, to avoid answering machines, etc).

Sun_Addict wrote: »

I was told he would be given an alarm to wear round his neck and that a carer would call round just to check he was ok but that seems to have disappeared.

..Chase these up first thing tomorrow. I'd try the GP, the OT, let the district nurses know that MrSA will be alone in the afternoon. If you've been allocated a good Macmillan nurse, call her too.
That might get MrSA at least a couple of visits while you're at work, and hopefully delivery of the panic button, as well as remind them all about arranging carers to pop in (can be done by the next day - if you insist ).

Hope you and MrSA are having a good day today, and the dog-lead doesn't get tangled in MrSA's wheels when you go for a walk.

Lucky makes very good points too..

taxi73

Don't know what to suggest about getting help for DH whilst you're at work.We didn't get offered any nurses/carers and DH had to work so he just left me on my own with sandwiches/drinks made if I was too weak to get them...it was a bonus if DD was at home to help in between her shifts..sorry this doesn't help.I really think they should check peoples home lives to see if they need help

Sun_Addict

Thanks all

Taxi your experience with after care was the same as ours is now. Nothing! Might try ringing MacMillan tomorrow to see if they can point me in the right direction. If the worst comes to the worst I will go off sick with stress - I am more or less at the end of my tether at the moment anyway.


Anyway too late - the inevitable happened this morning just as I was about to leave for work Mr SA fell down the stairs - from top to bottom - and banged his head on the front door. He's now back in hospital. He appears to have been extremely lucky and just has an enormous bruise on his back. He has had an x-ray and will be having a CT scan to make sure he's not set off the brain bleed again. When I heard the bang bang bang as he fell I honestly expected the worst.


He hadn't been too well since the blood transfusion on Friday. Saturday and Sunday he was very tired, confused, unsteady on his feet and has had headache. I honestly think he is not consistently well enough to be at home just yet. I am rather concerned that although he has had 3 bouts of chemo now he still doesn't seem to be getting better brain-wise. Don't know if he is still recovering from the bleed still or whether it's the tumour? He is due a brain scan shortly anyway to see what's happening so hopefully this will shed some light on the situation.


This seems very trivial now but I sold most of the stuff I put on eBay. However won't be retiring on the proceeds but I'm looking at it as a bit of paid decluttering.

brizzledfw

Hugs, sun addict. Hope this week improves and fast xx