WARNING - Vent.....

karren

have you heard of direct payments???
ive encountered them previously and you get the benefit paid to yourselves, you choose the amount of support you need and what you need and base it around yourselves and not vice versa, you interview the person and you call the shots, look into it as i know how its helped people previously to keep control of thier lives, just a suggestion x

Seanymph

Is there a disability rights group in your area?

We have one in Norfolk and they are fantastic. They are aware of the support available, for carers as well, and they assist and support applications for benefits.

I am disabled. Not seriously, but disabled. And the biggest handicap I had to overcome to begin with was my own mental attitude.

You have to put in that work I'm afraid.

You are ENTITLED to support and assistance to allow your wife to live as stressfree and enabled life as possible, but just as importantly for YOU to live as stress free and enabled a life as possible.

ENTITLED. That is the word I would like you to repeat to yourself until you start to believe it. The entire feeling you are 'whinging' or that you have to 'soldier on' and 'cope' mentality works against both you and your wife in this situation.

There is help and support out there, you have to access it - there are plenty of people accessing it who aren't entitled - but you are, and the systems are in pace, and supported by us as a society, by communities, by politicians, by medical professionals - nearly everyone supports the system in some way to ensure that families in your situation are as supported as possible, as enabled as possible, and the impact of circumstances such as yours are mitigated as much as possible for everyone involved. Including your children - there will be organisations and groups to support them in dealing with their aspect of the situation.

Now this isn't always easy to access, because they have to ensure as few as the 'not entitled' get through as possible - which means those that ARE entitled tend to get put off and those 'working the system' who have no shame tend to bully through. I don't have an answer to that. But what I am sure of is that you should be supported to ensure that you get as much support as could possibly be available. And you owe it to yourself, your wife, and your children to ensure that you access it.

A local disability group, a carers group, the school your children attend - start asking people what is there, what you can access, how you can get support. You don't have to do this alone, there are many many people who give up time and support organisations so that you don't have to.

*just a thought - the local occupational therapists local to me come out if you call and ask them to - it may be that they could make suggestions you haven't thought of that would give your wife more confidence moving around her house *

Desperado99

You're not whinging........ in fact you sound like an incredibly lovely husband.

As it's a form of MS have you thought of contacting the MS society:


http://www.mssociety.org.uk/ms-support

zzzLazyDaisy

Sorry if this has already been pointed out, but the DLA appeal can only take into account your wife's condition and needs at the time the decision to award LRC was made.

If her condition has deteriorated since that time and/or if the diagnosis of MS has been made more recently, you may be better off making asking for a supersession of the current award.

daska

OK, thinking practically... Consider involving social services - it'll be the adult disability team, any support they provide is likely to be heavily means tested but they can come up with suggestions for help that might be worth considering. Have you had an Occupational Therapy assessment to see if there is anything that they can suggest relevant to her increasing needs - it's very easy to just 'keep going' and not realise that there are simple solutions to some problems. A care alarm might be a good idea if she doesn't already have one - usually available via SS though not free - a keybox for emergency access will be needed but that can be useful in it's own right for friends and carers when/if it comes to it. You don't say how old the children are but they are entitled to a carer's assessment as well, if appropriate and that can, depending on the area you're in, prove a useful outlet for them. Would they/you benefit from an au-pair/au-pair+? Au-pairs are now considered employees and entitled to minimum wage etc. but it's worth considering if you're thinking about buying in help. (An au-pair+ will do more hours/housework). HomeStart/SureStart if the kids are young as well.

I don't think you sound like you're whingeing, you sound like a practical, responsible and a loving husband.

MentalMinnie

My mother suffers from Primary Progessive MS, so i have sympathy for you. I've been there, done that AND bought serveral t-shirts.

CrazyRed

Thank-you to you all - I really do appreciate your support. I have printed off all the initial replies and will attempt to answer all the points below:

Sadly, her condition will never improve - it is a form of sclerosis and each "migraine" adds to the damage, which increases the pressure in the brain, which leads to more migraines and so the vicious circle continues. The only potential hope is the use of a suitable Anti-Epileptic Drug (AED) but this process is very much 'trial and error' whilst finding one that suits the condition and lessens the frequency of the "migraines".

Her emotions are affected as well, which, as you can appreciate has lead to tensions between us and further stress.

We have now had a SS Assessment Officer visit, but they seemed more interested in putting ramps at the front door than offering any other form of day-to-day help or assistance to find it. We are looking to find a cleaner and to outsource the ironing, in an effort to make both our lives easier but of course the key to that is the Tribunal.

The children have been very well-supported. As soon as we were made aware of the clinical findings, we contacted both schools, explaining the situation and asking for their support for the children during the day - both schools responded positively to this and have strategies in place to help them should they feel the need to access it. We've also discussed the situation at home, and been ready to answer questions and provide assurance where we can.

I have not had a carers assessment, yet - it would appear that, when you're on LRC then help and 'support' is very thin on the ground, especially for carers. I did, however, go to a local carers charity and had some very positive response from them - they've suggested I attend a three-day carer's workshop in order to get support and additional training at the end of Feb/beginning of March.

The family, such that is left, pretty much don't want to know. Both of us are only children, my parents have passed away, as have my granbdparents and the only one that could help is an uncle who is quite a distance from us and is the type of person who "doesn't interfere" in other people's lives - he didn't even come and visit me when I was seriously ill in hospital earlier this year (botched abdominal surgery that nearly killed me!), instead relying on my wife to give him updates when she'd been in to see me. My MIL has her own life to lead, and has made it quite plain that, when I married her daughter, I took on the responsibility of looking after her but she'd be more than happy to have the stepson as he'd be 'more useful' to her with her livery stables......

Victory - I had debated whether D&D was the more appropriate forum for this, but then considered that it was more a rant for me to vent my spleen, rather than seek advice on the Tribunal itself, so felt it more appropriate in this sub-forum. I am, however, more than amenable to it being moved if anyone considers it's placement inappropriate.

Seanymph - many, many thanks for your enlightened and insightful post. We don't seem to have a disability rights group in our area, but I will make enquiries at the Carers course next month and see what others do/have done for support. Our OT's are only accessible via SS and that "accessiblity" can only start once they've completed their assessment - currently we're waiting for a "manager" to "review" the Officer's report and decide "if" they're going to do anything for us. Howeveer, you do make a very valid point (especially in the light of recent adverse media coverage around beneifts, and disability ones especially) with the word ENTITLED. It's certainly a word we are going to both keep in our minds and remember going forwards.

Desperado99 - yes, we have been on the MS Society website and gained some useful insight into the condition and why my wife behaves the way she does - it's helped my understanding enormously.

Lazydaisy - this appeal WAS a supersession of the previous award - she orignally got awarded HRM and LRC back in 1995 and for whatever reason the DWP decided that her condition had not worsened in all that time, despite what we put on the DLA forms when we mentioned the change of circumstances to them.

Care alarms have been considered, as have other aids that will assist day-to-day living - she's a bit reluctant regarding the care alarm (and for reasons that I fully understand) but is gradually coming round to the idea that it COULD beneift her to have one so that's going to be February's mission.

Anything that is means-tested will, sadly, fail - because I do this strange, 4-letter swearword beginning with W and we are (semi) financially-independent. We don't have a massive house (our previous one got reposessed because the LL failed to pay the mortgage, so we've ended up in HA property via the homeless route) so the idea of "live in" care cannot happen.

The Tribunal was earlier this week - in fact, very shortly after I made the OP. It's been a tense few days, but we finally have the decision and I don't think I'll ever tire of seeing those four wrods on the letter we recieved from them - "the appeal is allowed". The Tribunal have seen sense (in fact, they verbally noted in the hearing that it was evident that we'd been underplaying the effects on the pair of us for a considerable length of time) and have awarded her HRM and MRC indefinitely, from the date of the original appeal.

Clearly, this will give us a small amount of back-pay that we have decided to use to get some aids for my wife - a folding wheelchair, a 4-legged walking tripod, (possibly) the carer alarm, some mobility scooter batteries and some sort of "frame" to help her get into and out of bed more comfortably - plus, of course, some more clothes as she's got very little left that fits her now! Those are the current plans for it, but again, so much will depend on how much is forthcoming as the lump sum. This we won't know for a few more days yet, but it never hurts to start looking around at what is available. We already have a stairlift, walk-in shower, grab-handles in the bathroom and toliet, numerous walking sticks (including folding ones that we keep in the car) a mobility scooter and a raised toilet seat - all self-funded over the last few years. Ongoing, we have found a local dry-cleaners that offers an ironing service and have made a few enquiries regarding cleaners coming in to lend a hand.

I really do appreciate everybody's replies - thank-you for your support during what has proven to be a very, very difficult time for us.

Kind regards

meritaten

I am so sorry hun - your post made me cry.
I think you should be getting the higher rate of DLA as it sounds as if your OH needs 24/7 care. you should also be getting the higher rate of mobility allowance.
your poor OH has a degenerative illness - I would contact Social Services and enlist their help in seeing if your OH could have some 'aids' in the home. such as stair lifts, a bath lift etc. Though I have to say that although she may have an entitlement to these - they often dont materialise due to lack of funds.
If there is a forum or a charity organisation of this illness - join it ASAP! the others on there will have gone through a similar process and can offer you not just practical advice - but emotional support.
my very best wishes
merit

deb68_2

hi
I have MS if you want to chat pm me we oh an myself maybe able help you or give you some ideas
i take a lot of vitamins and so many tabs from consultant i must rattle
vision in left eye !!!!!!s off comes back then takes my left leg an foot with it lol got to laugh even tho i dont want too

I call ms IT as that what it is to me something i will have to fight every day so i dont wish it too have a name
Life is dam hard most days i fall alot bum not quite big enough yet to bounce me back up
i have a stick i Hate it but have to :mad: i try to keep smiling for my kids they no im in pain but i smile an say im ok but im not

please do get in touch any help we can give we will
Have they offered her Gabapentin for pain? trouble with it is it puts lot of weight on there are other tabs like i said im on so many hubby hhas to sort them out

hes my carer he takes me to the bathroom the shower he dresses me an i so wish he didnt have too this isnt what he signed up for

I cant go out on my own cant walk to far these days i have times of standing there n comming too on the floor so i no how your wife feels with that

your doing an amazing thing you should be very proud of yourself
take care
love to both
deb

CrazyRed

dirtysexymonkey wrote: »

are her emotions always affected or does she have moments when shes like her old self? what would she want to happen in the future? her wishes, if she is able to express them, should be paramount. i suspect she will have her children and yourself at the forefront of her thoughts on the future. it wont be an easy conversation to have but it is a necessary one.
.

Sorry, I missed replying to this in my last post - please accept my apologies.

Her emotions are always affected, nowadays - sadly, she has changed from the person I met all those years ago, and not necessarily for the better. However, I do love her, and I do care, very deeply, for her so I've told her that I'll always be here for her - no matter what. We married for better or for worse, in sickness and in health and I take those bits of my vows particularly seriously.

In terms of the 'difficult conversation' - we have already discussed at some length 'the future' and she has outlined her wishes clearly to me. Of course, I have vowed to do the utmost I can to ensure that those wishes are met. We've also put our respective Wills in order since having that conversation - not being morbid, just being practical and sensible. We've both had a very rough year, health-wise, and both felt it important to deal with this particular aspect sooner, rather than later.