Advice please ?

Hi everyone…

I am a carer for my wife who has SPMS and i am struggling. I am constantly having to lift her for loo visits, in and out of bed etc and i cannot do this for much longer. We have had OH visits but still no advice with lifting other than being told i shouldnt be doing that…

I am drained and need help but i feel invisible !

What do i do ?

Thanks for reading.

Hi Tom,

Sorry to hear about your wife. I’m sure you’re doing a great job looking after her but it must be tiring.

Could the OT get you a commode so your wife has just got to slide from the bed?

Or a wheelchair commode?

Made so much more difficult in the current situation.

Take care


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Thanks for your reply Jen

My wife is unable to transfer now even with a slide board.She has no core strength at all.

A hoist has been mentioned in the past but that is a two handed job apparently ?


You need a hoist. The OH should be able to get you one.

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Hi can you not get a carer in to help you tom? You can apply for direct payments. dont know your circumstances so difficult but if you could i would go that route. you wont be any use to her if you slipped a disc. xxxxxx

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I do need a carer in to help… i am just amazed we are left to find solutions ourselves with minimal help if at all.

You are right, i would be no use with a slipped disc

Hi sounds like time for a hoist. Dont let them fob you off with a manual one. They are so hard to push and manoeuvre on carpet.You need a ceiling hoist. I have 1 in bedroom and 1 in lounge. I cannot transfer any other way.

It will take time to get organised, but if you ring Social Services and tell them it is urgent, you also need an OT to come. It is a big job. I got MS Society to pay towards what the council would pay, as we have no savings. The local MS group were so kind and helpful.

I only need 1 carer to hoist me as my top half is quite good, so I can help. What about asking for a care assessment too?

I have carers twice a day and pay them on Direct Payments. We pay £40 a week towards the cost which is around £400 a week.


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Thanks Bouds… thats really helpful information. I have not been made aware of a care assessment ? My wife has had the disease over 20 years and thats never been offered before ? No wonder i feel invisible !

What do i do in the meantime ? regarding lifting as i just cannot do it anymore

Its not right but we have to ask and also fight for help.You will have to tell them what you need and be firm with them too.You need a carers assessment with social services and also a care assessment for your wife too.

Thanks Jaydee, i am going to pursue those options today and see what i can organise.

Hi Tom,

You don’t say how old your wife is but have you presume she gets PIP. Have you applied for carer’s ot attendance allowance?

Maybe worth phoning citizens’ advice. they would help.


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My wife is 54 and does get PIP… Yes i get carers allowance too as i have had to give up work and take early retirement. I dont think there any other benefits we are entitled to ?

Does she/can she get ESA? Hopefully someone can advise on this, I’m single and don’t know if the same rules apply to a married person.

Good luck

Jan x

No… i wasnt aware of ESA ? i will look into it.

Thanks Jan x

Esa is the new Incapacity benefit…ie sick pay. As your wife is under state pension age, she should be etitled to this.

There are 2 parts to it…

`.1. for those unfit to work

  1. those who can return to work.

I got the first for some years.


Hi, what do you do in the meantime you say…well you MUST ring Social Services TOMORROW and tell them about your situation. PLEASE do it before you both end up in hospital.


Ring Citizens advice tomorrow ask them for benefit advice, ESA depends on a number of things and I’m worried about getting your hopes up.

Jan x

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She is probably not entitled to it as she has not worked for some time. I will make enquiries though after trying to get hold of the MS nurse… its not been a great weekend

Hi tom you dont do this on yourself. contact your local Adult social services ok, and explain. they are very good. they will then send someone to you for an assessment and deal things for you. that is how i got my direct payments. You should be able to get the number just for your area. type in adult social services…you area…

if you have issues give me a shout i will see if i can find the number for you. BUT THERE is help. even you GP should be helping you with this.