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    Who is doing what ?

    Hi
    l don't know if this has been covered before if it has my apologies and please point me in the right direction.
    So eventually I know I shall have to give up work and care needs will grow my wife works as well . A OT from Social Services came to see us and we had rails in the garden fitted and she explained about through floor lifts and the fact that a outdoor lift would all be expensive so why didn't we move ? Well of course it's not that easy. Anyway my question is this when needs get worse who does the caring ? As well as my wife etc ? She is 5 ft l am 6ft 4.
    Who pays for what?because there is always a cost a fact that l know of when l looked after my mum.
    I asked about housing by the way but was told no help forthcoming as even though the house is owned solely by my wife who lives there before me as we are married it's classed as joint and l do get that. Sorry for the moan but it's all so confusing and my wife says she is fed up with people just smiling and saying oh dear .

    #2
    My suggestion is to contact the MND Connect team who will help you navigate the minefield of care, adaptations, grants, benefits and much much more.

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      #3
      Hi Derbyram21 MND Connect do offer advice to navigate through all the minefield we all encounter. Youre also right there are lots of threads on here covering your queries too. Loads of people on here much more knowledgeable than me but I'll chip in:

      Re caring your local authority will undertake an assessment of your support needs once you reach the point that you feel you need carers. A Care Act Assessment.

      All services via the local authority are means tested...so a financial assessment too....in my area if you have over £23,500 in savings you're likely to be charged the full cost of any care provided. (Classed as a self funder).

      If and when your needs become more significant there's also an assessment undertaken for NHS Continuing Healthcare...if eligible then any care provided will be paid for by NHS.

      I'll leave it to others to discuss the housing issue...but I'm sure you should still be eligible for help even if owning property.
      Good luck👍
      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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        #4
        I know its a nightmare. We shouldn't have to do all this but im going to have to do the same contact mnd about what is available. We seem to draw a short straw at every turn. It's very stressful.

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          #5
          On Friday I am having a meeting with the Care In the community team. I will report back.
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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            #6
            Derbyram21

            It is very hard to get your head round.
            We are 14 months in and had to move twice as in private rented accomodation.

            Now in flat with wet room. Housing Assocciation.

            But it was a hard slog and very time consuming.

            If you are a couple, your money and house is classed together.
            So when my husband was unemployed because I had savings from a flat sale, he got nothing as I had money and was told to support him
            (which is all gone now).

            If you have savings they are classed jointly for the purposes of the government you are one person, regarding assets.

            They can track your ISAs as I got a call from the Universal Credit, telling me about an ISA I had forgotten about
            Only had a hundred pounds in it.

            BUT

            Carer Allowance and PIP are non mean tested
            Get on to PIP at least, you are intitled and ours was fast tracked.
            Talk to the MND nurse or assocciation, to send a form DS1500 (I think)

            Rather than a long 60 page form it was a short phone call.

            Take one day at a time

            there is a wealth of hard earned knowledge on here.

            I am an ex nurse (5 foot) and care for my husband (6 foot). It is difficult and not for everyone, I am trained in moving and handling but have told husband there will come a time when we will need carers.

            We get 3 hours respite a week from Hospice at Home.

            Hospice input does not mean you are about to die just that you have an incurable condition, so don't panic if palliative or hospice is mentioned.

            Mum gets help from them re dementia and she has had it 16 years.

            Say yes to any assistance, you can say no later.

            Sorry you are here but it's a wonderful community.

            Best wishes

            Donna


            Carer Husband diagnosed July 2020 MND possible Fail Arm Type?

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              #7
              Thank you for all your kindness and help.

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                #8
                You won't get pip if you are diagnosed after retirement. You only get attendance allowance. If your partner gets carers allowance that will stop on retirement even if you put it off.

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                  #9
                  Hi Denise , I got PIP at 65 but the state retirement pension age for me was 66.So I got lucky and got PIP as I was 3 months off the the age when state retirement pension would commence.
                  This enabled me to get a motability vehicle which you don’t get offered if applying for Attendance allowance.
                  Best wishes
                  Mary

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                    #10
                    Originally posted by denise View Post
                    You won't get pip if you are diagnosed after retirement. You only get attendance allowance. If your partner gets carers allowance that will stop on retirement even if you put it off.
                    I think you can get Attendance allowance even if your partner isn't claiming carers allowance. 😘😘
                    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                      #11
                      LindaB Hi isnt it that you can’t get carers allowance unless the person you care for has Attendance allowance or another qualifying benefit?

                      Best wishes
                      Mary

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                        #12
                        sorry i mean i can only get carers allowance when my husband gets his attendance allowance but i will lose it on retirement. he didnt get pip because his was at the old retirement age. he did get the higher rate of attendance allowance but no mobility allowance but help with using public transport whoopie. doesnt even look like we will get help with car tax. all good fun.

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                          #13
                          Mary C possibly...I'm not sure about that to be honest🤔😇
                          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

                          Comment


                            #14
                            Hi Denise
                            Attendance allowance has 2 rates and Stephen was awarded the high rate.There isnt another mobility allowance that tags on to Attendance allowance.
                            Hope you get the car tax issue sorted.
                            Best wishes
                            Mary

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                              #15
                              [QUOTE=Mary C;n62342]LindaB Hi isnt it that you can’t get carers allowance unless the person you care for has Attendance allowance or another qualifying benefit?

                              Carer’s Allowance is paid if the person being cared for receives PIP or Attendance Allowance. However, once the carer reaches State Pension age Carers Allowance stops. I know it sounds pedantic but there’s no such things as ‘retirement age’ any more - just the age at which you become eligible to receive State Pension.

                              Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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