Hubby (in stage 4 kidney failure had the pre dialysis meeting and there is an expectation that I will do the daily maintenance at home (he has decided to have home dialysis).
And to crown it PIP forms arrived. I was awarded PIP for 2 years but just 1 year on if these forms are not returned they will stop paying it.
Boot in the backside, coping Tips or plan needed .
Thanks a lot for your help and happy Halloween
Lovenhugs
Xoxo
Written by
randomphantoms
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Be kind to yourself, these kind of issues are too much for non-BI sufferers to cope with.
Take one step at a time, deal with each issue individually, on separate days if possible.
If you are anything like me though, it all needs dealing with immediately or it stresses me out having unresolved issues waiting to pounce.
A time management programme I was sent on once, when I had a worthwhile job! , taught us to break things down into manageable bits and set aside a little or set time each day to deal with them. That way you got the problem or issue dealt with and it didn't weigh heavy on your mind because you knew it would get done. The hardest bit was prioritising, not easy when they all come along at once.
Not sure that's any help but don't forget to give yourself the rest you need xxxx
Hi Shirl. So sorry to hear that you have become overwhelmed by all the demands being placed on you all at the same time. I know that situation very well myself and how it crashes me down so that I can't even begin to know how to deal with any of it. It isn't always possible to just focus on the one most important thing because everything needs dealing with equally as importantly or its such that it can't wait especially if it actually involves people. I can only think that the PIP form situation is because they take so long to process - even reviews - that that is why they are requesting it a year in advance so that the decision is made by the 2 year date. Is your frail mum staying with you for a while or is there an end date in sight where that pressure will resolve? As for the dialysis is he able to learn to do that himself as some people do or is it worth another conversation with the dialysis team to explore the alternatives of what other help maybe available. Otherwise if it really is going to be too much for you maybe you need to clearly say that you can't manage it at home. Guess hubby will not be happy about that but everyone who has to be involved needs to be considered. That is all just my thoughts and please disregard all or anything that you have already thought about and done. It is hard to offer advice without really knowing the ins and outs of what you have already actually done. The other thing I will say is that it can be terrifying and daunting to be faced with having to take responsibility for and manage home dialysis because it is an unknown and such a life saving procedure. However, once you get more practiced and knowledgeable about what needs to be done and how the initial panic, fear, pressure etc of the process actually becomes more manageable and a routine slots into place.
Fortunately the dialysis can be set aside as it is not immediate.
With my normal routine being iffy to say the least at the moment if I prioritise me and getting help with the forms in the next week then I will only have mum and that will be doable.
Do you have a photocopy of your previous PIP form because I guess much of it will be the same with just a few adjustments for new problems, worsening problems or any improvement changes. If you do then just recopy any relevant chunks of it! I so do know how easy it is to feel overwhelmed as it happens to me regularly when too many things occur at the same time or add in something new to contend with. When I happens I become mentally paralysed and then can't see the way to deal with things or even begin to do anything! I just seem to lurch from one patch of not coping to another with not much mental equilibrium in between! x
Was the same here when I first applied for DLA they hadn't heard of BI and that was 10&1/2 years ago, so crazy they still haven't logged it in their books.
first was told to apply for dla about 14 years ago. Took about 3 years to finally get it after several appeals. On last appeal they were shocked I hadnt been granted it straight away....then awarded it for 1 year and no back dating. Had to fight every year up until 6 years ago when suddenly was granted indefinatley.
Think it will all change again next year when I have to transfer to pips.
Yes kinda same here I had to apply for 2 years I think (mam & aunt) did it for me, then had to have a medical review for 2-3 years following, not heard anything in last 4-5 years but that's susposed to be changing next year or year after xxx
Hi, being a practical person and Carer for hubby I would suggest that you ask for help.
1- speak to Headway re PIP forms, and as someone else said see if you have a copy of the last one. If you see a medical person get a letter from them. Neuropsychologist the best if you see one.
2-as an unpaid family Carer for your husband you do not have to do all his care. You can insist on help to do it at home , more so because of your own condition. It doesn't matter if hubby has decided he wants treatment at home, you have rights and can refuse to do it. Hard I know but usually if you insist on help and emphasise your own difficulties you and hubby should get assistance.
3- mum! Is she staying for a long time, because again you have the right to say you cannot look after her without help. Social services, or direct payments if a long term move with you. If a short holiday then take time every day for you away from everyone. To rest and prepare for the next few hours.
Your health is really important and you have got a shed load of added problems at the moment. Problem is if you "manage" you find that you will be expected to continue doing everything. Ask for help now, insist that you cannot do it all. Headway may be able to help you get this too.
Headway helpline is very useful if you don't have a centre near you.
Good luck, and hugs as I do know what it's like, and I don't have a head injury so can only try to think how much harder it must be for you.
You will get through it, but quicker and wi less stress if you can assert you own rights. X
I know where the statement that came with the award is. Thanks for that prompt.
I have a discharge letter from the OT and a letter from the neuro ophthalmologist saying that my visual difficulties are secondary to my pontine lesion. Thanks for that prompt too.
Mum is staying for 3 weeks and then we are taking her back across the water and staying there for a week with a few nights away to other family members.
Hubby and the dialysis talkcan wait till after Xmas.
I am about to take a big chunk of time out today after 3 breakfasts, 2 loads of washing and taking mum to the local town shopping and boy can she shop.
Going to draw the blackout blind and sign off for now but will try to check in later.
Again thanks everyone I feel so much lighter and having a bit of a plan helps.
hi , ive just seen this and had to share my thoughts
1. i would definitely query if there has been a mistake with sending you pip forms out again after a year when it was awarded for 2..... or is it something like they awarded DLA for 2 years and are now changing to PIP, if so that still doesnt sound quite right. ....... But please do phone them up and query, i'm not sure who is assessing your claim, atos, capita or maximus..
2. if it transpires that you do have to do the forms now did now, i asked for a 2 week extension on mine. capita assessed my claim, it was very easy to obtain a n extension on the forms, i just phoned up and asked , said im brain injured, ive got a lot on, and this is causing me unecessary potential stress - 2 week extension granted in a second. ..... it might depend on which company is assessing you claim, but it is definitely worth phoning up and asking.
3. i know theres just so much info here but stick with it
i think it really does help PIP if you understand the points system and how it is awarded
.... please go to benefitsandwork.co.uk ..... then download their guide to filling in PIP .... first you have to register as a member, very small subscription fee.
then print off the guide to filling in PIP if you can. if you cant print it off just have a read of the copy youve downloaded.
... i guess my overall tip for a PIP form is make it as comprehensive as you possibly can, just put everything down
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when i got an appointment through to see an assessor after filling forms in i re-arranged for a date a bit further on in time, doing this through capita who were assessing was no problem at all.
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i made an appt with the gp and discussed everything that i thought was relevant for my pip claim to be successful
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a letter from a family member endorsing or adding to or expanding on what youve said also counts as evidence in a PIP claim.
You can do this, do the form bit by bit, and dont hesitate to let them know on the form if this is stressing you out, because it does potentially stess an awful lot of people out just the thought of it for very different reasons, but you can do this.
kick up the ar_e is last thing you need.
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people have commented on what else youve got going on, just to say that you have my best wishes.
Sorry to hear you have had a load dumped on you from a great height as others have said its tough for us Bi sufferers as we don't deal with stuff quite do well as non Bi sufferers, we have been re wired differently.
Take some deep breaths and try and start your day again is my advice I do it all the time. thirty seconds of meditation helps too. I really hope you are ok and have a fantastic Tuesday. XX N
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just a quick moan, sorry. 
omg all to much for me
Sorry for the no posts 
write like Yoda, do I now
Late night trip to a&e (!!!!!!)
