Hello from Lincoln

[Shadow42imp]

Hello

My name is Ty (45) and I care for my wife, Vicki (48). She has several problems. Having successfully fought the limitations brought on by Arthripobis by throwing bundles of energy at things, she also dealt with the loss of her complete colon through undiagnosed Chrons. We still managed a successful working life until MS appeared.

Vicki can no longer dress, wash, get herself out of or into bed or most of the daily routine she fought hard to "take for granted". She needs constant attendance thanks to the MS doing strange things to her balence, bladder and the illostomy, which quite simply has a mind of it's own :)

In 2001 we were assessed for medical care, and V was given 10 hours care a week. With attending a daycare centre twice a week there were 2 days in 7 I could use to plan things. 1 of those I tended to waste, simply falling asleep, as it's a rare thing indeed for Vicki to go through a night with less than 2 trips to the bathroom.

Earlier this year we were reassesed. We were told that from the next week care would now cost £200 monthly. That is 1/5th of our budget. Quite simply, we could not afford it. Her old wheelchair was way past it's best. and we were saving for a new one. That would have become a distant aim. Vicki likes her internet games, and loves movies. Both would have been severely restricted or gone altogether. We'd even have had to stop feeding the birds in the garden. Not much of a sacrifice maybe, but it's Vickis idea of true heaven to observe the wildlife around us.

In short, I'm now "it"... Lucky we love each other. The other problem is we make each other laugh too much. Yes, this IS a problem. 1. Our neighbours are fed up of smileing at the sound of tears of laughter without knowing why, and 2 I've mentioned V's hair trigger bladder... :)

Finally, the other love of my life. Earl is my 4th guide dog, and the son of my much loved 2nd one. Greg lasted 17 years and 8 months. and in his time was the best friend I've had. Earl is very much in that mould. Fearless, inquisitive and oppertune. Too intelligent in many ways for the job he does. Keeps me awake, as I get easily bored as well :)

[cotula]

Hello Ty, I just had to respond as soon as I read this - the positive attitude you both have leaps off the screen. It shines like the sun with your love for each other, too.

There are some folks round here can advise you how to go about it, but my immediate reaction is that you should appeal the decision (effectively) cutting the care allowed for Vicki. Get some backup from organisations helping MS sufferers and their families, and any or all Vicki's other problems. Would the RNIB be any help supporting you?

Have you been assessed as a carer? What help are you assessed as needing?

Others will be along soon,

Cotula

[Shadow42imp]

Hello Ty, I just had to respond as soon as I read this - the positive attitude you both have leaps off the screen. It shines like the sun with your love for each other, too.

There are some folks round here can advise you how to go about it, but my immediate reaction is that you should appeal the decision (effectively) cutting the care allowed for Vicki. Get some backup from organisations helping MS sufferers and their families, and any or all Vicki's other problems. Would the RNIB be any help supporting you?

Have you been assessed as a carer? What help are you assessed as needing?

Others will be along soon,

Cotula

Been assessed but Lincolnshire's budget does not cover the needs of those who require the care, never mind the carers. V is an MS Soceity member, and they have been very helpful to her. After withdrawing the care on pain of payment, I received a £200 cheque i.e. 1 month's care bill! We are appealing, but the wheels turn VERY slowly. We are also looking into direct payment, but if the appeal is slow, the direct payment assessment is competing with a drunken snail.

Having read other posts about resentment. We both suffer bouts of it, Vicki because of her lack of control of her own life and me because there are things I'd like to be doing with the remaining bit of my eyesight but don't get the chance. Luckily the raging at the sky hits us both at different times, and it's up to the other to be aroiund with a shoulder when the storm passes.

We make a good team. Vicki does the eyesight, I do the rest. She does have a few problems, double vison amongst them, but in the main we work things out. Friends often comment on the Heath Robinson nature of some of our homebrewed solutions to daily problems, but we don't care. It works for us

Ty

[cotula]

Not just Lincolnshire - almost every council seems to have a shortfall in funds in this area. I saw today in the paper that the Local Government Association is suggesting that 0.5% of NHS funds need to be diverted to social services for 'preventative' care.

However, it is the squeaky gate which gets oiled, so keep badgering them. I am not sure what you mean by 'direct payment assessment' - I thought direct payments were an alternative to the Council providing care themselves?

You know, the recent mentions of resentment here is something of a relief to me - I thought it was me being an ungrateful sourpuss!

I think carers and 'carees' would get on well with Heath Robinson. I bet the friends commenting would be stumped faced with the same problems you have - I bet they don't come up with better solutions.

Just thought - have you seen the book 'The Selfish Pig's Guide to Caring' by Hugh Marriott? I loved his attitude, very straighforward and realistic. He was/is a carer, he pulls no punches in the way he writes. Not everyone's cup of tea, but I liked it.

[Shadow42imp]

Thanks to those who pointed this out... Earl is not the son of my 2nd guide dog Greg, but he ought to be. They are so similar, so different.

Ty

[charles47]

Welcome, Ty! We're a friendly bunch - but watch out because I thought I had some chocolate biscuits next to my computer and they seem to have disappeared...it seems the Humphreys have moved on from milk to chocolate...

It's funny - in a sick sort of way - that direct payments are so popular with the government but seem to take ages to sort out. I've come across two people this week whose direct payments took 18 months! One drawback that may not have been mentioned is that you will still be assessed for charges, and I doubt that the charge will be any different unless your appeal wins.

But stick with it - one lady I know appealed 3 times. Eventually her charges reduced from £44 a week (which she could in no way afford) to nil. This is unusual (to say the least) but you should get a reduction of some sort.

[Shadow42imp]

Welcome, Ty! We're a friendly bunch - but watch out because I thought I had some chocolate biscuits next to my computer and they seem to have disappeared...it seems the Humphreys have moved on from milk to chocolate...

It's funny - in a sick sort of way - that direct payments are so popular with the government but seem to take ages to sort out. I've come across two people this week whose direct payments took 18 months! One drawback that may not have been mentioned is that you will still be assessed for charges, and I doubt that the charge will be any different unless your appeal wins.

But stick with it - one lady I know appealed 3 times. Eventually her charges reduced from £44 a week (which she could in no way afford) to nil. This is unusual (to say the least) but you should get a reduction of some sort.

Oh no! It was bad enough when they stole the milk, bu now chocolate?! That's it, I'm on a Humphrey hunt - this is war...

We accept the challenge. The good news is our review is likely to have happend well before we ever see the Direct Payment team. Obviously one tactic is to keep asking for reviews. I don't think there is a limit and I'm sure someone will get sick of the file.

It suprises me not that the direct payment process is so slow. One are asking a civil servant to do a job that will reduce the influence of their department... Mmmm, a bit like standing over a coputer with a bucket of water

Don't try and tell me this thing is not alive. I think gettting a webcam was a major mistake. Now it can observe me and go wrong JUST when I don't want it to!

Ty

[rosemary]

Hi Ty,

Just wanted to add my welcome to forum too.I thoroughly enjoyed reading your postings and look forward to learning more about both you and Vicki.

We are all here for the same thing,to get and give support if needed.

Rosemary

[Maryann]

Welcome to the forum Ty

I'm sure you'll finm the forum and site very supportive and helpful

Take care
Maryann x

[izzywizz]

Welcome Ty, my other half (today he's not a better half! but if he behaves himself, tomorrow he may be!) has MS. We have been all through the long winded process of assessment, first it was about 50/50 charges, then out of the blue, they said a "mistake" had been made and we would now have to pay full whack! After several days of phonejacking and pestering, it was changed again, another "error" - now we pay nothing, even though my husband has a small works pension. It is worth appealing, and fighting.
I admire your positive attitude, Ty, and hope everything goes well.

[Alison]

Hi I am Alison (48) originally from Lincoln and it is nice to see someone from the home town on the site. I am also on a Humphry site as I am quite partial to chocolate biscuits myself!! welcome to the site I am sure you will enjoy being part of tit and meeting other people like your self so knw that tyou are not alone. I suffer from MD. Take Care Alisonxxx