On the edge and toppling off....

Listening, Izzie.

Listening too.

Listening with interest Izzie, wish I could help but regretfully that is impossible, other than give you my ear. (((Izzie)))

((Izzie))

Hugs, hun.

I hope you're sleeping.

Love ((( you )))

Listening here, too, Iz.
And thinking of you.

I'm here. Thinking of and praying for you and S-boy.
(((Iz-))) (((S-boy)))

You know I'm listening--and worrying about you.

Enough.

Love you, kid.

spinning

stop, it needs to stop

very tired of feeling this way and not being able to do anything to stop things happening

when does it stop, will it ever be normal. It's never quiet even in the silence.

tests tests tests, pills, pain, pills, pain, pills, pain, pills, pain

R, S, R, S, R, S, R, S, R, S, R, S, R, S, R, S, R, S

two, not one

too much going on and nothing to balance on, get's scary trying to balance this life - too tiring

crahp

I'm listening to you, too, Iz.
I hear your distress. Your exhaustion. It all feels too hard hard & you're struggling.
I sorely wish I could do more than just listen.
I wish I could do even one small thing which could make some difference for you.
Please, at the very least, take things as easily as you can.
Don't even try to do anything that's not absolutely essential to do.
Try & rest. (I know that's easier said than done. Sigh. )
And keep posting here if it helps you.

Izzie querida, I do understand. I understand the noise in the silence. I understand the fatigue. I understand that things just keep coming. I'm not going to offer any words of consolation. You know how I feel.

Here's a line from the song you gave me: As all good friends we talk all night, and we fly wing to wing. I wish we could fly together--and go anywhere that we please.

Charlie is cancer free – radiotherapy to happen and then onwards and upwards. This is the best news.
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it's like a strangle hold where, choked, i can't even get to spit the words out in any semblance of order

so much anger - how do you stop the anger when it's not possible to cut things out that keep coming at you - unless you walk away from everyone, every thing and don't talk to anyone again - you may as well be dead

i've cut the grass, busied myself, as soon as i stop i see what's sitting waiting to be done or what i have no control over and the anger is so huge, the frustration

it's hard to go with the flow when the flow keeps taking your feet out from under you, literally and metaphorically

i don't want this crahp anymore, i don't want it and i can't shed it



i've no contact with R - not my choice - no response to anything i do, say, nothing

yet his social worker emails me on Fri and, out the blue, sends me the forms to fill in for him to claim benefits


"As R is now 18 he has to make a claim for benefits - however we have found out that as you are the appointee this has to be done by you, therefore I have sent the forms out to you 1st class today - he is making a claim for ESA (Employment Support Allowance) there will also need to be a claim for Housing Benefit and Council Tax Benefit.

If you feel that you do not want to do this then you will need to write a letter to DLA stating that you wish to relinquish being the appointee and that is because you feel that R is able to look after his own affairs from now on - they will then inform the Job centre. The address for that is blah.

I have spoken to R about this and he has no problem with you remaining the appointee, he just wants his money to be sorted out asap.

I will forward you the landlords details for the HB form and if you need anymore info just let me know, likewise if you do not want to do it then let me know asap as I am conscious that we are running out of time."

she sent the landlords address and an envelope addressed to where the forms need to be sent, no other documentary proof, no details filled in, just a yellow post it note asking for it to be done.


The questions in the forms are questions that i can't possibly answer, i don't know the answers, he won't talk to me - i can't answer or make up the answers - stupid stupid stupid - why is she asking me to do this and in the same breath saying "if you do not want to do this" - I CAN'T

i don't know who has to pay the council tax bill for his rental flat, or the CT reference number, what sort of tenancy he is, has his rent been registered as a fair rent by a rent officer, what does the rent include, how much are his bills etc - I cannot send in the proof of his address, or an electric bill, proof of private rent and tenancy, I don't know if he is claiming Job Seekers Allowance, I don't know if he has any service charges, I don't know what kind of central heating he has or whether there is a parking space, i don't know how many floors there are, how many rooms.... I don't know about any statutory payments, I don't know who is doctor is, I don't know what he has in his bank account, I don't know the names of the course or training centres he has been to or how many hours he was there, does the rent include heating, lighting, water, elec, fuel for cooking, laundry, cleaning windows - WTF - I DON'T KNOW THESE THINGS - BECAUSE I AM NOT ALLOWED TO - yet the social worker sends me the forms with no details filled in which she knows i don’t have........31 pages in one form, 52 pages in the other form - R has signed them and I am now supposed to fill them in and send them off

how can I do that - I can't - I don't have the proof documentation that is required, i don't have jack **** - why hasn't the social worker or why isn't she sitting down with him and helping him to fill in the forms and why has it been left for so long – this should have been done weeks ago

dammit - i would if i could

i would like nothing better than to be able to help him

******* hell


if i send them back not filled in and relinquish appointeeship for his DLA - then he's on his own; yet I cannot possibly fill in these forms - not because i don't want to - BECAUSE IT'S NOT POSSIBLE - I don't have the answers and cannot get them if R will not talk with me – he won’t answer txts, he won’t pick up the phone to me, he has blocked me from email. It's been nearly 2 years - NEARLY 2 GODDAM YEARS

It's angered me greatly.

I don't know what to do.

I guess I could fill them in as best I can, highlight all the boxes I can't answer, sign them, send them back to social worker and be held responsible if anything is incorrectly filled in by R or he doesn't know what documentation to send off... or I relinquish being his appointee, which, I don't want to do because that is the only connection we have.

If I relinquish being his appointee then R will take this as me walking away and not giving a damn – i know how his mind works - another reason to hate and blame me - and boy, he's been doing enough of that in his final "care" meeting

DAMMIT

Whatever I do, R will hold me responsible for and somehow it will come back on me and I feel shite enough already.

I know most folk would just say he’s 18, he won’t talk with you, he wants nothing to do with you, send it all back and make him and the social worker do it and let him get on with it – BUT YOU DON’T KNOW HOW THAT WOULD MAKE ME FEEL – i can’t feel any more shite than i do already








S-boy does not have arthritis. Confirmed by the rheumatologist. He does have sesamoiditis in both his toes and is hypermobile in many joints – he will require orthotics in all his shoes (not a problem) and as he grows, this should right itself – or be dealt with when he is older. We have it yet to be confirmed by the ortho surgeon that he will not operate, appt to be arranged – but the rheum thinks it unlikely he will have surgery at his age. The sesamoiditis is rare in a child.

Which leads onto referrals to 3 different consultants. This has been referred as urgent and his next appt. is this Thursday. Details I can’t go into due to S-boys privacy – however, he has tough few years ahead of him and this has messed with his head, and mine. He’s in pieces and also very angry. We’re both bubbling on the surface and then getting on with it as required. Nowt else to do really, screaming into pillows and shutting down boxes.

It’s difficult trying to keep it together, be supportive to him, hear and watch him cry about this and his brother and me say it’s all gonna be just fine.

<smile>

<vomit>

It’s really not fair – but then life isn’t, is it?
................................................................................................................................................................
I’m due to have ultrasound guided steroid injections into my ankles and a few other things going on with an increase in the methotrexate to try and stabilise the RA/Lupus. Pisses me off.

(((iz)))

Ditto! ((((Iz-))))

i tried to call R

cut off immediately x 1.
Place phone on side and walk away x 2

Within half an hour I received a phonecall from Matt – his 10hr/wk support worker. R had been on the phone to him crying and angry with me. Crying upset. Crying not understanding what to do.

I got very upset on the phone with Matt – told him I couldn’t do this anymore. Matt has fallen out with SS because of their lack of input... he is annoyed that the forms were sent to me, he’s also at a loss because he can’t get thru to R – frustrating all around

Since then, i have filled in the forms as best I can and have highlighted all the questions i’m unable to answer.

I am about to transfer all the funds from the DLA account and close it down. I told Matt i would withhold enough for a car, insurance and MOT for R and the rest will be put into R’s bank a/c. If he has more than a certain amount he will be refused housing benefit.

I’ve written (but not sent it yet) to the social worker, copying it to my lawyer, Matt and the Head of Social Services which, in so doing, i hope to force them into helping R fill in the forms. Matt confirmed R has no idea or understanding about the forms – not a clue, not what it means, nothing. How could he???? He can’t.

What i’ve written... don’t know if it’s right – don’t know what else to do.


You give me an impossible task, one that I wish I could do, but cant.

The questions in the forms are questions that i can't possibly answer, i don't know the answers, R won't talk with me - i can't answer or make up the answers and I find it grossly unfair that I am asked to answer questions on behalf of R for things I have absolutely no knowledge about.

I KNOW that R will not be able to answer these questions either leave alone comprehend some of the terminology in them. You also KNOW that R will not be able to answer these questions. He doesn't even know what the forms are for.

So R is making a "uninformed choice" (which is not a surprise to me and is unfair to him because he does not understand what these forms are for) and one which I am unable to assist him with.

I have no ability to fill in forms without any details, details that SHOULD have been filled in by yourselves and sent to me before I could possibly sign and take responsibility for a legal document to claim benefits - forms that I believe you are supposed to help him with, as his social worker. You will have to do this with R and help him get all the proof documentation together that they require.

I will reluctantly relinquish the appointeeship, as you have indicated, for his DLA money and transfer the balance of savings into R's a/c. I will remove £X from his account and hold it in my account for when he buys a car and to get insurance, MOT, road tax etc. If R objects to this, then he will need to contact me via yourself or Matt. This money is in my name and although I will not touch it, it's held for him so I am not sure if it is required to be declared on any of his forms. Again, you must know that he will not be able to fill in these forms and will not understand the benefit system or what is required of him to enable him to apply for these benefits.

My reason for doing this is, if R has any savings... he will not be eligible for housing benefit, so I will keep funds I have saved in my account ... Whether or not this is correct, I do not know now, but I will not be pursuing it any further or making further enquiries when I am bashing my head against a brick wall to no avail. I will hold the funds that I believe he will need in the very near future for a car, MOT and insurance etc, as this is why I have been saving the money for him. He is shortly to take his driving test and will then require a car - at the moment he is pretty much a prisoner in his own home.

If he is penalised because I have saved money for him over the years - then there is nothing I can do about this as he will not speak to me to make other arrangements for the funds.

R chooses not to acknowledge me or his immediate family. I can do no more to try and help or assist him when he will not even speak to me regarding the info I need. This does not mean I have walked away from him, nor have I given up on him, or that I don't love him, it simply means that if he will not /cannot communicate with me, I cannot get the information to fill in a bunch of forms which will finance him to live and be housed. However, his choice (not a choice) is not to communicate, there's nothing I can do about that any more, but not for the want of trying.

This is not a case of "if I don't want to do this" as you've put in your email - this is a case of I am not able to do this and quite honestly, if you had read the forms and the questions, which I am assuming you must do on a regular basis when helping young adults fill them out, you would see that there is no way possible that I can answer the information that is asked on them. This, I feel, is the responsibility of Social Services and it very unfair to make me feel as tho I am not doing this because I don't wish to. I CAN'T. If you wished me to sign the forms, then you should have filled in all the pertinent information prior to sending them to me. Would that have not made sense? I CANNOT FILL IN THE INFORMATION I DON'T HAVE OR SEND IT OFF TO THE JOBCENTRE.

I do not believe that R has the capability to look after his own financial affairs or, in any way, to understand the forms, fill them in, or what they mean. He will struggle with the concept of having to go to a doctor and explain his difficulties or why he is unable to work. How on earth does he do that when he can't communicate it?

Again, as has happened so many times in the past, I feel he will be hung out to dry, and now he is 18 there is nothing I can do to stop it. He does NOT understand these forms, he does not understand about the financial aspects of living on his own or what benefits to claim for, he is not able to budget accordingly, as you already know, and it appears, as he not able to communicate with me in any way, shape or form, and I'm unable to assist him with this. Social services are going to have to help him.

I am sending the forms back to you to deal with immediately along with documentation i have here. I will also forward a copy of the letter to the DLA which will relinquish my appointeeship solely because I am unable to fill in these forms with the information they require - not because I feel that R is able to take responsibility for his finances or look after his affairs. I will make this clear in the letter to them. It appears I have no choice in this matter as you have clearly stated that the requirement is for me, as his DLA appointee (finance only - remember, I did not fill in his DLA forms, The House did), to fill in forms for him when I do not have the necessary information; that is an impossible task for me. Therefore, I admit I am unable to act as his appointee any longer.

You must have known that.

I will be copying this email to Matt so that he is fully aware of what is happening and my views on this, being that he is in contact with my son. Matt - I would ask that you read this whole email out to R so that he knows WHY I am not able to fill in the forms and that he must insist that SOCIAL SERVICES assist him and this must be done immediately so that he will be able to apply for benefits.

I will also copy this email to my lawyer so that he also is fully aware of the state of play and what is happening with R now.




I've repeated myself a lot because I’ve asked Matt to read it out to R so that he can maybe understand something, repeat repeat repeat and that maybe he will tell them he cannot fill the forms in - bah, they already know he can't which is why it's been passed to me. I don’t know if it will work – but it's worth a shot

His lease expires shortly - if the forms don't go in... he's out! Does he understand that - course he doesn't.





As for Sboy – i will try and reassure him as best i can – tears tonight – i wish i could explain but ...



k...STOP!

deep breaths muffin.

one painful step at a time.

you are an awesome mom...

((iz))

Holding your hand.

Snarling at what you're being asked to do. Sympathetic at your frustration.

How I wish I could do something, anything, to help you. Semisnarling about this too.

Here and listening, Iz-. You are doing an awesome job with an impossible situation. You are stronger than you know. Feeling for you as a mum and standing with you. (((Izzie)))

I humbly endorse the foregoing posts Izzie, I'm just stunned so many tragic events continuesly head your way. I know you're strong, keep fighting, don't give up. (((Izzie)))