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    #16
    Carers such as yourself denise are the true heroes....no pay....no status...very little support....without informal carers the whole system would implode.
    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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      #17
      Thanks LindaB 😚
      when i can think of something profound i will update this.

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        #18
        denise are you claiming Carers allowance (£67.25 weekly)
        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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          #19
          Anyone who is an unpaid carer for someone with MND is an absolute hero. You have my total admiration.

          When I was first diagnosed I read a post on here from someone who said MND is a very selfish disease because of the prognosis and the daily struggles we face. When I read that I resolved to always be grateful but of course sometimes we don't want to say thank you for being helped in the loo because we want to do it ourselves.

          Being a carer is relentless and physically and mentally exhausting .i often wonder if the roles were reversed whether i would be as calm and patient as my husband. ( especially when help is needed in the night !)

          Love and hugs to carers ! 💕
          Debbie x

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            #20
            Originally posted by Deb View Post

            Being a carer is relentless and physically and mentally exhausting .i often wonder if the roles were reversed whether i would be as calm and patient as my husband. ( especially when help is needed in the night !)

            Love and hugs to carers ! 💕
            Debbie x
            I often think about that too Deb, I do badly being woken up, but my hubby just does as requested and rolls back over to sleep. So much patience!!!! He's my hero 💕
            Edit to say over here we get a Carers Allowance fortnightly.
            Last edited by aussiegirl; 11 September 2021, 01:25.

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              #21
              Carers allowance is not applicable in this country once you reach state pension age and you receive over £128 a week.........they think cos we are pensioners we are loaded and will do it for nowt,

              Can you imagine once all these carers reached age 66, get their SP, then suddenly the carer says you need to have outside care now or go to a home..........wonder what the authorities would do with that?

              Cynic of Wakefield
              Husband Albert diagnosed PMA Feb 21

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                #22
                We don’t qualify for carers allocation as we’re over the income threshold with my husband’s three quarters teachers pension. He left early, Lynne
                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                I'm staying positive and taking each day as it comes.

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                  #23
                  I didn't think it was income tested.
                  when i can think of something profound i will update this.

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                    #24
                    denise
                    Hi Denise,
                    Hope you get linked to St Lukes Hospice soon and they give you both some support.Also it will be great for you to know what’s on offer for future reference.
                    I can’t imagine the amount of organisation you had to do to move from Portugal to settle back in England .
                    Hope you and Stephen have a good day.
                    Best wishes
                    Mary

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                      #25
                      You are right Denise Carers allowance is not means tested for savings or other income, But

                      State Pension is classed as a benefit (would you believe) so once the SP kicks in the other Carers allowance benefit messes things up.
                      Husband Albert diagnosed PMA Feb 21

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                        #26
                        Thanks sue and thanks for your lovely thoughts Mary.
                        when i can think of something profound i will update this.

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                          #27
                          Well said, Pricey. I have a team of people that help my husband, some are outstanding, some are so-so, but all in all, I am always cognizant that this job is incredibly hard and it would be preposterous for me to demand perfection from someone who is not making a great deal of money, who works long hours, on their feet, away from their kids, and is dealing with their own family and caregiving issues at home. It is incredibly hard to find reliable carers who can deal with the challenges of complex care, so they are worth every penny.

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                            #28
                            I just wish they were paid more as I have lost two of my best ones to higher paid jobs. ☹️
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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