This morning....

After a horrid few weeks of pain even I gave in yesterday. Did not realise how bad the vertigo and aura had become till I slipped down the stairs. My kids took one look at me and declared they had seen Death on Horrible Histories looking better than I did as they hauled me up to bed.

Normally I prefer to collapse downstairs- not from choice but because my eldest son has a cheerful mix of autism and bi-polar and I like to know when he sets my kitchen on fire. Gave in and reached for the tramodol as that makes me sleepy and left the kids to it...........

I think I may have slept for 18 or so hours.......felt a lot better and managed to get up *yay* went downstairs in search of hot drink and saw first of all the state of the hall *shudders* faught my way past the junk they had left and walked into a kitchen which may have been the inspairation for Frank Zappas danagerous kitchen. My eldest had burnt every pan making beans on toast, their was sticky drippy stuff on the ceiling [I suspect the lesson about sticking the lid on the liguidiser BEFORE making a milkshake is yet to be learnt]. No one had fed the buns hay which is why Pumpkin was using his toys to rattle the bars of his dog crate.

I have spent today scraping my kitchen clean, bagging up rubbish and trying to vacuum the floors on my hands and knees - cunning plan after vertigo meant I fell over onto the vacuum. Then I dsat there thinking why on earth am I doing this. My needs as a carer have been assessed as being critical and as bad as it can get.

Poor hubby spent the whole of last night preventing him form getting up the stairs to wake me up to tell me stuff. That explains why he said he was going into work at 6am for a rest! I can cope with the headache that eats my life but I cannot cope with that and my son. I want a quiet house back. I no longer want flashing lights shone in my eyes and definatly not drum and bass at full vloume at 3am.

So I rang up trying to track down his CMHT SW'er and left him the message I want that lump out so I can do the stuff my neurology team tell me I need to do- like accept diazapam to try and break the big nasty ones, reduce stress, rest...all the things I cannot do whilst he is there leaving havoc in his wake.

Spent the rest of the day filling in the DLA forms fro myself after my sons SWer suggested I should after he saw me with a bad head last week.

See I KNOW how to have fun.

Maybe come Sept I can get up on the slightly better days and not have to deal with such mess and maybe I could occasionally go out for a coffee with the bloke I married instead of having to tag team with him being stuck caring for both of us when I keel over.

Bloomin' 'eck... I don't know how on earth you can be coping. I thought to myself this week that no matter how bad things were, I could at least pretty much hibernate. Other than the pets, and basic food and drink stuff for me, the rest could just wait.

Really hope you get some support soon. x

Oh poppet - it sounds like a total nightmare - I have 4 kids in the house and totally understand the chaos they cause - but at least mine sleep at night and hubby is around to take over when I fall.

I do hope the SW can help you out and fast - you so need a break.

BIG HUGS

Oh GAWD Katie..I feel for you.

Was feeling sorry for myself today (just got so much to sort out family wise at present) and then I read you post and though blimey.

Some days you just want to run away and leave them all to it don't you..but you don't and hats off to you for everything you are managing.

You are doing so well at just getting down the stairs today.

MASSIVE (but gentle and non threatening) HUGS

Jane


Hang in there..you'll win through

Jane
xxx

Some one said to me recently 'Life's a s**t sandwich..it just all depends on how thick your bread is sliced'.

Oh Bless honey. I've been hiding away for 2 days ... just cause I can....now I feel guily!
What a nightmare for you.
If we were closer we could all rush over and help.....or maybe shuffle!!!
If you knew me better and knew I'd taken care of my 23 yr old son through 14yrs of "autistic" behaviour because of his reaction to his ventolin and steroids to his chronic asthma .......oh the joys of oral steroid and restraint and self harming I loved them all....I would have your boy for a week for you.... just to give you a break plus hubby is an ex social worker for his sinsX
But theses days you have to be so careful, kindness doesnt cut it and devon is a long way away. Maybe if I lived next door eh?
Does grandma and grandad not live close?
Take care hon dont do too much.
Sheena x

Sheena...did you see the Children Behind Bars series on Vinney Green?

Thats the type of secure schooling/placement that CAHMS, Ed' and social services recommended except it was a secure MH placement. My eldest is classed as having very complex needs and challenging behaviour. He tried to set a school on fire, stuck pupils and teachers in hospital and generally behaved like a rhino on speed till the bi-polar was finally spotted. When manic there is very little that can stop him. Since he found out about bi-polar and began working with stat services he has been a lot better but still has what the police term 'his little moments' Thankfully he is logged on the police database as extremely vulnerable and if picked up must be seen by the on-call crisis team before anyone does anything else. These days he just goes with the police accepts a cup of coffee and waits with the duty officer for stat support to arrive.

The placement he had at 19 was working 15 staff to one lad. At home its him and me. At 19 the Ed authority stopped paying and I have been stuck in limbo till he hit 21 and I could push via the Vulnerable Adult route under the MH act policies.

It really does need to be supported housing via the NHS Mental health Trust route. I do recall I used to earn serious amounts of money in H&SC roles, what I cannot cope with is two nasty primary headache disorders and challenging behaviour in my own home. The mix of headaches and drugs stop me from being able to stay on the ball and I know it.

I would not wish that lad on anyone who is not paid and does not have full insurance cover. He has laid out police officers and staff in units till they called me in to deal with him. I am getting too old and ouchy for that now. The latest manic phase just hammered home I no longer have the enrgy to do this and he needs his own front door albeit in a supported flat complex with CPNs on call.

I don't know how you manage...I really take my hat off to you. No wonder you are on your knees.

I hope you get things as sorted as you possible can as soon as you can. I expect you feel hamstrung by the slowness of services to react to any situation, no matter how much at risk all concerned are. It's utterly frustrating and must be making you terribly ill in the process.

No one can imagine what it's like unless they have lived through it and I guess you being a nice person you wouldn't wish your scenario on anyone (well not many..I bet there are some exceptions).
Used to work in adult MH and I see nothings changed despite all the political spoutings..care in the community in reality still means 'there's your family now get on with it'. The concept is great but there is no money available to back up the services that are required to keep families well and supported properly.

Sorry am ranting now but it makes me so angry as I know there are so many people out there in this type of situation.

I really feel for you. Sorry if that is pathetically trite but it is very much heartfelt.

Much love
Jane
x

Sorry Hon when you said "son" I thought you meant a little lad.. not and adult... at least my lad stopped when I was still able to physically control him even although he still managed to bust my nose once!!
God knows how you cope I had know idea how bad it was and though I would just brighten your day with an offer of help if we lived a bit closer.... will try to engage brain next time soz x x x