WARNING - Vent.....

CrazyRed

Good evening all.

Usual (and,dare I say it, typical) AE here on these forums. I wanted to seperate the answers to this particular query from my "normal" profile I use on here for privacy reasons.Not only that, of course, the "forum police" are out in force at the moment and picking up on the slightest little thing in a post as an excuse to go over previous posts and criticise, which I don't find helpful or appropriate at all.

I will try to be as concise as I can in this post but am really struggling to get my head around everything at the moment, so do forgive any ramblings. However, getting all this out is likely to prove incredibly cathartic to me personally!

Facts of the matter:

39-y.o. wife has been disabled since birth - effectively she had a stroke on the right side of her brain whilst in the womb which has lead to a medically-recognised condition called !!!!!! hemiplegia.
Obviously, this has caused her mobility and practical issues all her life which, to be very fair to her, she has coped with marvellously and has lead a "normal" life (albiet with limitations) up until a couple of years ago - 2 kids, both natural births, own horse up until a few years ago, "relatively" mobile (understanding the limitations
that physical disability places upon mobility anyway), two marriages, you know - "normal life".

Things started going downhill about two years ago and then escalated. Fast forwards to today and I see a woman with
a BMI of just 17.7 (without a diet....) who has dropped two dress sizes in four to six months, started suffering blinding migraines again after a 20-year absence, who can now virtually NOT walk (think octogenerian, with the usual apologies for offence caused to any particularly sprightly octogenerians reading this!) and requires
rapidly-increasing amounts of care. Obvious to even my untrained medical eye that something is badly wrong. By this stage, I was so concerned that I organised formal flexible working arrangements with my employer to do the school run and be at home in a supervisory capacity (she gets much worse as the day wears on) in the afternoons.

I won't bore you with details of the minutae of the rounds of tests, scans, etc., we've endured over the last twelve months, but anybody who's been through that mill will know exactly what I mean when I say it's seemed never-ending, to both of us. Every single scan or test came back with "nothing wrong" - no slipped discs, no broken bones, no arthritis, no rheumatism, you name it, they ruled it out. Yet, before my eyes, she is going downhill rapidly - there absolutely HAD to be a reason.

In the end, we'd resigned ourselves to Pain Management and very strong long-acting painkillers, and a decreasing quality of life for us all as a family. There seemed no other choice - we felt we were being told to "go away" all the time and all this illness was in our minds.

Finally, a change of GP and she has the brainwave to send for a head MRI - the results of which we got a week or so back. The clinical findings are those of a form of Multiple Sclerosis (I won't past it's true name on a public forum because it's fairly rare in this country and I wouldn't want a Google Search unearthing this post) which my research has lead me to understand is scarring on the brain, which appears to get worse over time and is worsened by epileptic attacks (which initially can manifest themselves in a similar manner to a migraine...)

In her case the damage is in such a specific area of the brain that it affects the part of the brain that controls emotions, too and is virtually inoperable because of the location - it's just too high-risk.

Obviously, I've got to be practical - I need to protect my little family first and foremost and do what I can. That's a given.

I'm already working flexibly and coming home in the afternoons to do the school run and be here for my missus, and I'm perfectly prepared to increase the amount of time at home as needed and, if we come to it, stop work altogether. I've spent weeks thinking different scenarios through and preparing myself mentally for what is to come, but my head's ended up spinning and I just need to vent to get it all out in front of me.

Currently, her need is more for "supervision" in the afternoons - she CAN "potter around" and wants to continue doing so for as long as she practically can.However, without someone being present, it is very unwise for her to get up and do anything - she now suffers with fairly frequent blackouts which come on with absolutely no warning.

Obviously, if she's standing and one of these hits, then she will fall - period. On her own, in a normal 3-bedroomed house, that's just asking for trouble. I've literally, 'caught' her a few times when this has happened and I've been present - although she is now requiring a lot more help with "normal" daily activities - washing, brushing hair, showering as well now - again, more a need for "someone to be around" who can also lend a hand, rather than a need for that person to actually wash the hair/body/etc for her at this stage, but with the pace of things over the last 2 years, how long before that IS needed?

That said, though, I've also come to realise that I also do a lot of the cooking, all the shopping, laundry, and other jobs around the house - totally without thinking, so, actually, I do provide a lot more care than I give myself credit for.

Our once quite reasonable husband/wife relationship has gradually shifted to a relationship of patient/carer over the months.

This is going to sound daft - especially after the incoherent babble above - but what the heck is going to happen next? It'd be fair to say that 2011 really has not been 'our year' health wise - I had major abdominal surgery in July that knocked me flat on my back for weeks, and now this with t'other half.

Neither of us want me to totally give up working, until the situation gets so dire that I HAVE to. Until then, we can probably manage with a bit of flexible working (as currently) but stepping that up to be spending two full days working from home rather than 5 days in the office, and then reviewing the situation in, say 6 month's time.

We're currently fighting a Tribunal case for DLA to try and get it recognised that her care needs are more akin to those of one on Middle Rate Care component, rather than it's current award level of Low Rate - this will allow us to 'buy-in' some additional support for either or both of us, and will protect my State Pension Rights in the future [underlying entitlement to Carers Allowance provides NI Contribution weekly] but that's proving to be a (so far 13-month) slog.

You must think I'm a whinging old whatsit, and I daresay certian members of this forum in particular are sitting there thinking "stop whinging and get on with it".However, I DO feel better for having 'vented my spleen' so to speak. If you've read this far, I congratulate you!

Gillyx

I really do not think anyone is thinking "stop whinging and get on with it"

You and your family have been through a lot in the past while and of course it takes it's toll. I don't really have much to add but Good Luck with the tribunal for the DLA, it really seems so many people are claiming this who shouldn't be entitled and the genuine cases where it's needed, seem to be over looked.

I think it's wonderful how much you are doing for your wife and family and aren't sticking your head in the sand

quietheart

Oh you poor soul, I really feel for you. I'm surprised you are only getting low rate care. It really sounds like you need middle rate and then you may also be able to claim carer's allowance.
You sound like a great partner and dad, they are lucky to have you.

There_Goes_Trouble

Hi,

Sorry to hear your wife's condition is progressing and the news has not been great. I think you're doing a fantastic job supporting your family and working full time, take care not to over do it though or you'll not be any help to anyone.

I don't have much practically to offer, other than perhaps you could look into getting a home help, or a carer for the times during the day your wife finds most difficult to enable to you to continue working. How old are the children? Would it help for them to go to a child minder for a couple of afternoons after school so your wife can rest and you can work? Or after school club? A cleaner might take some of the pressure off the two of you too as it would be one less thing for you to do.

I am currently looking into home care for my Grandmother who needs looking after at home. This might be something to think about in the future if your wife's condition continues to deteriorate. There's a lot more out there than I thought there was, so much so that my problem is too much choice and trying to weed out the companies that suit, rather than the other way round. I can send you the links I've found if you want them. Basically, you can have a tailor made care package to suit your needs - at a price, of course!

I don't think you're whinging. I know how hard it is caring for other people no matter how much you love them. Sometimes you just need to let off some steam, then you go back to it with a clearer head. There's nothing wrong with that, it's good for you.

dirtysexymonkey

this type of thing really makes me angry. when people in your situation cannot get the benefits they are rightfully entitled to, but others are greedily taking every penny they want and saving a minimum of £100 a week out of their benefits. its so wrong.

i doubt anyone is thinking just shut up and get on with it. youre in a stressful situation - vent all you like! makes a change from the usual suspects banging on about their 'problems' and inventing them for attention!

i dont know if your wifes condition is treatable or is one that may in the future reverse itself or not, but i think you need to consider the nature of the total situation and the effects on your children. they must be at the forefront of your mind throughout all of this. they will be, i have no doubt, but for many its easy to place them aside while the immediate problems are to do with your wife.

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.

i hope you get your benefits sorted pdq! it will be a disgrace if they are not.

Saturnalia

My heart goes out to you reading your story. I hope you can find the help you need, you have had sensible advice and hopefully there will be more people around who can offer practical and emotional help both here and IRL.

Anyone who says you should stop whinging will get short shrift from me and the other posters, you NEED to vent and to seek advice.

Sorry I can't help you more.

rachel6188

As someone whos been on morphine for 4 years because of problems from bowel obstructions and adhesions. I was training to be a nurse when i got ill myself and iv lost over 4 stone (not through dieting) if your wife has lost alot of weight request a dietician who can help her. (i have ensure drinks to try and make sure im getting all i need as i stuggle to eat). I had only been with my boyfriend 2 weeks when i first got ill and we are still together nearly 6 years on (id been ill for 2 years when i was put on morphine after tramadol etc)
The DLA tribunal i pray goes well. Can you ask your wifes consultants to do a report for her aswell.
I really do hope that you can get the help and support you and your family need.
I hope its ok to post this link http://www.direct.gov.uk/en/DisabledPeople/index.htm. Hugs to you all being ill and in pain etc is hard not just for the person suffering but for the whole family xx

BitterAndTwisted

OP: it sounds like you've got a fair-sized house. Would it be possible to engage someone to live-in and give your wife some company, to keep an eye on her when otherwise she would be alone in the house? If not, perhaps someone who could come in every day and perhaps only leave her alone when they're doing the school-run?

That way, you wouldn't have to sacrifice you own career and future earnings for a while longer. Perhaps it could be funded with the DLA when it's awarded?

CH27

Is there any Social Services involvement?

Could your wife go to a Day Centre a couple of times a week so she gets a change of scene & is cared for?

Are there any family or friends who could organise a sitting rota or help with the children?

Have you asked about Respite Care to give you a break?

victory

Would you not get more help from the 'disability and dosh' side of this forum as there are many people on there also waiting and fighthing with the DLA to get properly assessed and they may be able to help you iwth the letter writing etc?

MrsManda

I don't think you're whinging, it sounds like you are doing what you can and need help.

Has your wife had an assessment by social services/you had a carer's assessment? It's worth seeing if they can offer any assistance.

Good luck with the tribunal, I don't know how these things work but as you've said you think you've not given enough credit to exactly what you do this may be a factor in your wife only being given LRC and LRM.
It's worth writing a diary for a week listing your wife's condition and what you have had to do for her.

My illness was no where near as severe as your wife's and I was surprised to get LRC/LRM without any problems but I think it was mainly down to writing a diary before completing the form as it helped me and my husband realise quite how much my illness had affected our lives. Whereas usually most people put a positive spin on things because we don't want people thinking we're whinging, we need to be completely honest on the forms and with doctors in order to get the help we need.