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    Respect for carers

    Following a recent fund raising event I was visited by the treasurers of the MNDA northern branch. During our conversation I was asked how I was getting on with my carers to which I responded that I was very happy with them. They looked surprised at this and told me that I was lucky and that most people they visited were unhappy with the service. I was sorry to hear this and it got me thinking. Am I lucky or is it time that some people lowered their expectations ?
    These are not people who have spent 3 or 4 years at university. They are not driving round in company cars on Β£60,000 per year salaries. Neither are they trained in the specific needs of MND patients. They are people who are ready to get out of bed at 6 a.m. and go out in the middle of winter to do what they can to help people like me who can`t help themselves. They work long anti social hours and in my opinion are vastly underpaid. The least they deserve is a welcoming smile and a thank you as they leave. Do they make mistakes ? Yes of course they do but to criticize and complain is no help to them or to the person they are there to help. I like to think that I am working with my carers rather than they are working for me. When something goes wrong I try to make light of it and then work out a way to avoid it happening again. Some of a carers duties are unpleasant to say the least but they will be there for you on Christmas morning to help you on to the loo and get you dressed while most people are opening presents and drinking bucks fizz. Cut them a little slack please and show them the respect they deserve.

    #2
    Well said Pricey but I bet some care companies are due some criticism. I’m just guessing as seen lots of posts about this subject. I don’t have anybody coming in to care for me yet. It seems to be a minefield. 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.

    Comment


      #3
      Please don`t build it into a minefield in your own head. You are sure to be apprehensive. I put off accepting carers for as long as I could because I wanted to cling on to my independence but when I could no longer stand I had no choice. I am used to having them now. They are not robots. They all have their strong points and weak points but they do their best and that is all we can ask. They say that they like coming to me because they can have a laugh. Well if that is true I feel quite proud to have given them a little something back. There will be good and bad in every agency. I suggest you appreciate the good and work with them to overcome the bad. I wish you well.

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        #4
        at some stage i will have to agree to help because i will find it increasingly difficult to cope with caring for my husband. i know it will be difficult for both of us. ive had approximately 4 hours away from him in the last 2 years. its not easy caring for someone. weve just had a bit of an argument over his thinking i will just drop everything and do for him.
        when i can think of something profound i will update this.

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          #5
          It's not the workers I have a problem with it's their management.
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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            #6
            Pricey I am in awe of outside carers and was disappointed that yesterdays review of care didn't give them the massive pay rise they ought to get whether it be care homes or outside carers,

            BUT I aim to carry on with caring for my husband as long as possible as I agree with Lynne it is indeed a minefield.............I have had the carers assessment, my husband has had the Adult care assessment and quite frankly some of the questions asked were banal to say the least, after being asked if I was "Happy"
            caring for my husband I switched into glazed eye mode, who on earth would be "Happy" with this situation I ask, they were just ticking boxes

            Sue
            Husband Albert diagnosed PMA Feb 21

            Comment


              #7
              I am concerned that the money for social care will not reach the grassroots.

              It is a hard job, I have done it
              You are only to do the bare bones and the reason I left it and nursing was to constant chasing the clock
              And never having the time to care properly.

              Caring for husband, last 2 years
              His energy is variable and neither of us happy at the thought of having to do certain things at certain times, around carers.
              Both of us aware that there may come a time, we will need them

              Grateful for the 3 hours a week respite from Hospice at Home.
              So I can get stuff done outside the house that are at a further distance.

              I loved caring and have fond memories of my clients, some staff and bosses not so much.

              Managed care for grandad and mum, with carers. Most lovely but again the bosses and management are difficult.

              Husband Thomas diagnosed MND July 2020 (prob Fail Arm type)

              Comment


                #8
                It's been said before but worth repeating - good carers are worth their weight in gold. Like others I've done the job - many years ago - and loved it. I knew I gave 100% effort to being the best carer I could be. Then in a care home setting...same.
                Sadly there are a few people who get into the profession who shouldnt....they are the minority... however as the challenge to recruit carers becomes increasingly difficult...my concern is there may be more of the type who shouldn't be allowed anywhere near people who need support. I manage on average 3 safeguarding cases a week involving care agencies. Maybe I'm cynical.

                Carers need the best training and a good salary...with recognition of their value and status.
                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


                  #9
                  denise
                  Hi Denise,
                  Are you in touch yet with St Lukes hospice in your area.Maybe they could offer some respite at home for you?
                  If not in contact already maybe it would be beneficial to you and Stephen to get support from them..details on their website .
                  Nobody can cope with being on call 24 hours a day.My husband goes to badminton 3 times a week or for walks or pub with friend.This happens as we have close family and friends who will sit with me in my husbands absence.
                  Its so tough for you Denise but maybe now is the time to see if you can get a sitter service for Stephen if needed to allow you to get a break to do what you want.
                  Also It’s useful for hospice team to meet Stephen and do a base line assessment with you both.
                  Best wishes
                  Mary

                  Comment


                    #10
                    I am new to this forum and have read the above comments with great interest. I think we all agree that carers should have better training and better salary but we all know that it is not going happen any time soon. I think that is why I am in awe of the ladies who attend me every morning and evening. They could earn as much money at the local spar shop. I am unable to take even one or two steps now and my speech is so badly affected that I only use the phone to text. I live alone and can only get to the toilet with the use of a hoist. Without my carers I am lost. Perhaps that is why I appreciate them more than most.

                    Comment


                      #11
                      Originally posted by pricey View Post
                      ... Perhaps that is why I appreciate them more than most.
                      I don't think forum members here under-appreciate their paid/outside carers - it's not something which generally comes through from people's posts on this forum, it's quite the opposite actually.

                      ​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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                        #12
                        I love my carers I just hate their office! πŸ˜„πŸ€—πŸ˜πŸ™xx
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                        Comment


                          #13
                          Hi Mary we have a multi disciplinary on 24th so hoping I will get it from there or I shall enquire at the doctors surgery on Monday. Xxx
                          when i can think of something profound i will update this.

                          Comment


                            #14
                            I have the utmost respect for professional carers who work long hours for very average pay and always get blamed for everything and anything that can go wrong...however everyone has to be vigilant about the handful of poor carers who have no business even using the title. I'm cynical because I read the accounts....
                            I appreciate good carers and well run care agencies and I always ensure positive feedback is given...
                            Yep worth their weight in gold😘
                            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


                              #15
                              I work long hours for nothing. 😭
                              when i can think of something profound i will update this.

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