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Needing Help

Having had a read of a few posts over the last couple of days I have finally decided to post for myself, mainly for advice/support/sanity/?.

I used to be a very positive and hopeful person, however this has rapidly eroded away, and i am finding it difficult to cope and see any wins with this cruel disease.

I remember 6 years ago the day my partner was diagnosed after having a “relapse” out of the blue 4 months after her 30th birthday. She was taken to hospital with Mydriasis and uncoordinated walking. Initial diagnosis was a bleed on the brain but after more investigation she was diagnosed with M.S. I actually remember being relieved that it wasn’t something terminal and thought, this isn’t too bad, boy how wrong was I!

She was put on Tysabri for 3 years and this is awesome, she was able to return to work as a mental health nurse and retained her independence but then disaster! she was taken off Tysabri because she got an infusion rash.

Neuro put her on Gilenya (which she had 3 relapses on) she had to quit work, developed fairly significant cognitive impairment to the point where she can’t really read or write anymore and struggles to work the remote control. They took her off this after a year.

Neurologist put her back on Tysabri, but give her Piriton at the same time. It was by that time too late, a year back on Tysabri, she got an MRI and lumbar puncture and it’s meerly stopping the relapses but no improvements, they say her M.S is stable and the damage is/was cause by brain atrophy.

We feel very let down by the Neurologist, despite our opposition I really feel he decided my partner’s path for her rather than helping her decide herself. You put your trust in these people to know better. At no time was cognitive impairment even mentioned, we didn’t even know it was a possibility.

I would urge people starting this to question, question and question again their M.S care team, don’t just take what they say as gospel. But then hindsight is a wonderful thing. I know they are overworked but I always thought at times they were just not listening to us.

Anyways fast forward 6 years from diagnosis and I’ve had to quit work to look after my partner, they did offer carer’s but said it would be for 3 times a day, 30 mins a time and it would probably cost a couple of hundred pounds a month. My partner really needs someone here all the time otherwise she sits alone (which breaks my heart) watching Friends all day and is prone to falling occasionally going to the loo.

Family are a joke, she has 2 brothers, one visits sporadically, 1 hasn’t seen her in 2 years as he doesn’t like seeing her like this and her mum who did move in initially to help and was then very resistant to leave once my partner was back on her feet visits for around an hour on a Saturday. I phoned her the other day to ask for help, she pretty much told me I had made my bed. (she blames me for her having to leave when partner was back on her feet.)

This last week has been particularly tough, I started having panic attacks, thinking I was losing my partner, had to go to the Drs who gave me beta-blockers. I’m just so lost and starting to feel like i’m failing.

I really need to help my partner with her cognitive impairment, it’s tough because she doesn’t even realise she has an issue, the neuro said this was common. I need more info on CRT or something and was hoping other people would have ideas. I have done the usual things like diaries and even got an Amazon Echo hoping that would help as she asks about appointments at least 5 times a day but she keeps forgetting the Echo’s name (Alexa)

I need to break the cycle of her sitting all day watching tv although she’s very resistant.

oh cole(etc) what a sad story.

you are both young (mid thirties i presume).

you definitely need some expert help for your wife and also for yourself.

take care of yourself, if you get ill it all goes tits up.

carole x

Such a sad post . Try calling 0808 800 8000 (ms society help) or 0800 783 0518 ( ms uk help) just speaking with a person who understands can really help.

all the best

mick

Many thanks for the replies.

My partner is 36, I am 42.

It is a sad story, but i still refuse to give up, on my partner, our 2 kids and the future.

While I’m finding things tough I do think that also makes you more determined. Spent most of the day on the phone giving people hell to get things done. The hoops you have to jump through just to get things done is crazy though and everything takes so much time. If I’ve heard “you have to fill out an application form” once today I’ve heard it 5 times.

After the local elections on Thursday I can see a couple of councillors getting to know my name really well.

hi cole etc (hope you don’t mind but i can’t remember the name long enough to write it)

you nag the councillors!

it does them good, keeps them in touch with real life.

carole x

Hi cole you have a right to a carers assessment even if you partner doesn’t receive care from local authority . There will also be local carers groups that you could use for your support ?

Rather than 3 Calls a day you can request a personal budget where you and your partner could decide how you would spend that to meet your partners needs . Yes there is a financial assessment but if you as a family are now on a low income and don’t have significant levels of savings in my cases the charge is nil…it’s worth requesting an assessment for both of you . Don’t know how long it is since you sought help before but the care act ( legislation that drives adult social care ) has brought many changes and new rights to individuals and those who care for them…

On a personal note …It’s hard being a carer… whilst I have ms, (luckily the impact is still quite minor ) I also work and care for my husband who has memory problems … you need to look after yourself as well as your partner …

I would get carers in and go back to work.

I`m wondering …are people aware of a new amount of money that we were recently told about?

It is £20 a week for full time carers and it isnt included in any means testing. I do have DPs and 24.25 hours, plus 3 sleepovers a week.

my hubby has applied for it…it`s not automatic. but we were led to believe it was newly available under a new Care Act.

he`s tried chasing it up but cant get hold of the right person. he applied about 5 weeks ago.

It might not sound a lot, but chuff knows, we need every penny dont we?

pollsx

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