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    #16
    Originally posted by MMG View Post
    We have been managing with 2 x 30 minute carer visits but have just been approved for 42 hrs a week and are embarking on employing a PA ourself via direct payments route
    I really hate to throw the cat amongst the pigeons but... is that 42 hours of care or 42 care hours? I ask because;
    Originally posted by MMG View Post
    We currently use a MOLIFT but have a hoist on order
    when the hoist arrives, it may change to a double up shift (2 carers), so that may have implications for the 42 hours.

    It may be that you could count as a carer, or it may not. xx
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    ​

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      #17
      We are interviewing another care company next week. After 2 weeks with our first we are not seeing any improvement. This morning they got in a muddle with the hoist they have been using for nearly 2 weeks and asked me how it should go! They have to be micro managed the whole time πŸ˜•
      Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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        #18
        Rosemary6NT sorry to hear that....usually I'd advise sticking with carers you've got & working to improve...however these do sound a lost causeπŸ˜•
        Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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          #19
          Originally posted by LindaB View Post
          Rosemary6NT sorry to hear that....usually I'd advise sticking with carers you've got & working to improve...however these do sound a lost causeπŸ˜•
          They seem to have trouble concentrating on what they are doing,too busy chatting, and lack the awareness to get things right. Very frustrating.
          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

          Comment


            #20
            Originally posted by Rosemary6NT View Post
            We are interviewing another care company next week.
            Hopefully it goes well and they can take you on Rosemary 🀞🀞😘
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            ​

            Comment


              #21
              Originally posted by Rosemary6NT View Post

              They seem to have trouble concentrating on what they are doing,too busy chatting, and lack the awareness to get things right. Very frustrating.
              Sometimes I've asked for 'spot checks' on carers or for a senior carer to buddy up with underperforming carers to push for improvement. Not easy....good luck with new agency.πŸ˜‰πŸ˜˜
              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

              Comment


                #22
                Originally posted by Ellie View Post
                I really hate to throw the cat amongst the pigeons but... is that 42 hours of care or 42 care hours? I ask because;

                when the hoist arrives, it may change to a double up shift (2 carers), so that may have implications for the 42 hours.

                It may be that you could count as a carer, or it may not. xx
                We currently have 1 carer for 2 separate 1/2 hour calls. Not much help to be honest - partly because we have had no continuity of carers and partly because I have not "let" them help with much because no rapport or trust has been built due to lack of continuity and complete lack of understanding by the carers of hubby's needs. No care plan is in place and carers struggle with making a drink. I don't see this as any form of help.

                The recent review states 42 care hours, which I assume to be a doubling up of carers - however that isn't what we need as I am here and I count myself as the "continuity" and chief carer.

                I appreciate that due to health and safety care agencies will expect hoisting to be a 2 person job, but I will be one of them. I am in my early 50's and reasonably fit.

                We should be getting a CHC assessment shortly, and this may have different results in terms of hubby's needs, but I am trying to get the "now" sorted.

                I have been looking around at agencies with good CQC ratings and good reviews but they are charging double the agency rate that Social Care is prepared to pay so we will probably end up topping up. But I hope it will be worth it to get satisfactory and useful support.

                I agree with other people who state that standard of carers has been poor. I have actually made a complaint today as the carer who turned up this afternoon who we haven't seen since November stated at the top of her voice - right in front of hubby "Hasn't he deteriorated a lot in a short space of time". Clearly sensitivity and compassion isn't on her job description.

                He started today on a high but was soon knocked down to feeling blue. Livid doesn't quite cover it!!!
                Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

                Sense of humour intact throughout.

                Sadly passed away peacefully 2/9/22

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                  #23
                  MMG glad you complained...absolutely appalling😠
                  Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                    #24
                    MMG if you had 2 carers you could rely on that would give you the opportunity to take a well earned break. (That is what I hoped for my partner but she is constantly required to troubleshoot so she has no break at all)
                    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                    Comment


                      #25
                      Originally posted by MMG View Post
                      I have actually made a complaint today as the carer who turned up this afternoon who we haven't seen since November stated at the top of her voice - right in front of hubby "Hasn't he deteriorated a lot in a short space of time".
                      Oh. My. Days. That is outrageous on numerous levels 🀬🀬 - good for you for making a complaint.

                      I wish you well in the CHC process and in finding PAs or carers. 🀞🀞😘
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      ​

                      Comment


                        #26
                        The result of my complaint was that they sent a completely new carer who hadn't been before, didn't know what was wrong with him, didn't know he had to have thickeners in a drink (or how to use thickeners) couldn't find the kettle. Couldn't find the tea bags ( In a container marked "Tea" behind the kettle)

                        So I spent the half an hour showing her how to make a cup of tea and how to give it to him.

                        I am placing so much hope on new carers - but even that not happening as quick as it should. I signed off the advert to be placed on our behalf a fortnight ago but still not been advertised.

                        That old saying if you want something done do it yourself is so right.

                        I really don't know how people cope without a partner.

                        Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

                        Sense of humour intact throughout.

                        Sadly passed away peacefully 2/9/22

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                          #27
                          Glad it wasn't just me. Where do they get these people?

                          when i can think of something profound i will update this.

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                            #28
                            matthew55 Are the carers washing your bits and bobs yet? 😘😘
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            ​

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                              #29
                              Yes thank goodness πŸ˜ŠπŸ˜πŸ€—πŸ˜xx
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                                #30
                                Originally posted by matthew55 View Post
                                Yes thank goodness
                                Thank goodness indeed. No need for a Haz Mat sign 😘😘


                                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                                ​

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