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    #16
    Originally posted by Iron Will View Post
    I'm in Manchester. I was talking to someone about beds, hoists and carers when they just said there were carers and carers. the feeling was go private . not ready yet but I thought it was worth noting. I'm still in reasonable nick so no rush, of course time will tell.
    When the time comes, if you're thinking of going private, it would be wise to use an agency that doesn't do care for social services. The reason I say this is that if your carers are doing social services as well as private work, they will be pushed for time. I think you would struggle to get the service you are after.

    Another point to consider is cost. I have to have two carers at a time as they have to use a hoist. At the moment, social services in Bury Council area don't charge more for two carers than just one. However, if you go privately you would have to pay for each of them. In addition, the rate full cost payers are charged is 25% less than the agency charges privately. These differences can make a huge difference to the amount you have to pay for care.
    Dina

    Trying to keep positive, but not always managing.

    Comment


      #17
      Hi Dina,

      We all have meltdowns and understand exactly how you feel and what provokes them!!! Big hug to you

      I've bee dependent on carers since 2008, so have had a few differences with carers - we can't expect to get on with every carer, nor them with us. It IS important to trust a carer and have a good rapport with them, particularly as they get more involved with your personal care.

      I have learned to nip relationship issues in the bud and to have friendly, open and honest chats with them - if that doesn't improve things, I contact their manager and take it from there. In my experience, most, not all issues, can be sorted out amicably and is often due to a simple misunderstanding left to fester....

      I have twice asked for a carer to be removed from my care team.

      Best of luck to you!

      Love Elllie.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
      Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

      Comment


        #18
        Hi Dina. I hope that today has been easier for you.
        Probably about the time of your strife I was having a shitty day because of husband troubles. He decided to have an enormous rant at me. I tried to hold my own but was too upset to get my words out. It's hard enough speaking as it is. 24 hours later there's still tension in the air. He rarely apologises for anything. It's usually all the other persons fault. But the level of anger and how he threw things back in my face that he's done for me feels wholly inappropriate. He's always been this way and pulls no punches for MND. I'm seriously worried for the future. Lynne
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
        I'm staying positive and taking each day as it comes.

        Comment


          #19
          Hi Lynne,

          Hope things have calm down more. Life is extra extra hard when you can't communicate quickly and well. It is just impossible to explain things in that situation.

          I think that most of us worry about our other halves and the future care.

          Hugs Terry
          TB once said that "The forum is still the best source for friendship and information."

          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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            #20
            Lynne, I am so, so sorry for your situation.

            Any chance you can get a week respite and give you a break away from him?

            Big hugs to you...

            Love Ellie.
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
            Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

            Comment


              #21
              Thanks Terry and Ellie. No respite chance at all. I encourage him to keep up his playing in music sessions, mostly Irish Trad.' He always comes back happy and much easier to get along with. He decided to not go out on Tuesday this week saying it was so he could look after me, but their was footy on so I'm not convinced. Anyway whenever he suggests staying in for me I tell him no need to and that it's more important that he keeps happy. He knows how I feel about his rants. I enjoy the couple of hours break too. I can watch some Netflix that he wouldn't be interested in.

              I looked after him and his two kids (I could write a book about that) shortly after we got together as he'd had a breakdown. I was always patient and attentive, gave him space when he needed it. I put up with his kids icy attitude to me aware that they'd understandably have preferred their mum (who'd left them all 2 years before I was on the scene). Can you see why I'm disappointed and fearful? Lynne
              Last edited by Lynne K; 5 May 2019, 17:22.
              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
              I'm staying positive and taking each day as it comes.

              Comment


                #22
                Hi Lynne,

                So sorry for your situation...Life is so unfair and I totally understand why you have had a meltdown. I can see why you are fearful and frustrated.

                I am sure we all have a panic about the future sometimes and an atmosphere at home is enough to set one off. It's really hard to pull yourself up then and get back on an even keel.

                Hopefully, you will feel better tomorrow as it is another day !

                Thinking of you and sending hugs,
                Love Debbie x

                Comment


                  #23
                  Thanks Debbie x
                  ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                  I'm staying positive and taking each day as it comes.

                  Comment


                    #24
                    Oh, Lynne, I'm so sorry you had such a sh*tty time with your husband. I hope the atmosphere between you is easier now. I can understand you feeling concerned for the future but please try not to worry about it - try to take things one day at a time. I'm sending you some virtual hugs as my arms aren't quite long enough to reach your side of Radcliffe. ((((()))))
                    Dina

                    Trying to keep positive, but not always managing.

                    Comment


                      #25
                      Hi Lynne,

                      Sorry to hear that things have been particularly difficult for you at home.

                      I agree with you, that it is good to have time apart every now and again. It sounds like you have tried to encourage your husband to socialise with his friends, so that you can have a break from each other sometimes - but perhaps he worries about leaving you at home by youself, in case you were to have a fall?

                      There are personal alarms we can get and sometimes OTs can provide them - if you were to get one, then perhaps that would put your husband's mind at rest a bit about you being at home without him? (Just a thought, and you might already have one anyway.)

                      I'm with you about needing some 'me time' every now and then - especially so that we can watch what we want on TV in peace! - after all, I don't think there are many husbands and wives who have the same taste in TV programmes!

                      Hopefully you both had a lovely time when you were away on holiday recently. It could just be a case of him having the post-holiday blues for a short while (not that he should be taking things out on you!).

                      I hope tomorrow is a better day for you and that the situation improves very soon.

                      Love and hugs,
                      Kayleigh x
                      Last edited by Kayleigh; 6 May 2019, 00:00.

                      Comment


                        #26
                        Hi Kayleigh. Today got better as it went on. Some talking done and for a change he didn't kick off when I explained. No apology but quietly listened.

                        When he goes out I make sure that my mobile is always either in my pocket or in my walker so if I fall I can contact him. He's only half an hour away sometimes 45 minutes sometimes and an hour and a half the furthest away. Thanks for your message. Lynne
                        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                        I'm staying positive and taking each day as it comes.

                        Comment


                          #27
                          Hi Lynne, I'm glad things have improved for you today and I hope tomorrow gets even better.

                          My partner has had a bad day today, which has made him grumpy. He apologised over dinner but the grumps continued after we had eaten. He is feeling overwhelmed but rejects anything and everything I try to do to ease the burden.
                          Dina

                          Trying to keep positive, but not always managing.

                          Comment


                            #28
                            I'm glad you had a good day Lynne and that your husband listened to your side of things without getting argumentative.

                            Sorry to hear that things didn't go so well with your partner today, Dina. Sometimes, if they are in a bad mood, nothing anyone says is going to make them feel better about things.

                            I suppose it's a case of taking one day at a time and trying to make the best of things - while hopefully being kind to ourselves and each other!

                            Love and hugs
                            Kayleigh xx
                            Last edited by Kayleigh; 7 May 2019, 01:16.

                            Comment


                              #29
                              Originally posted by Kayleigh View Post
                              Sorry to hear that things didn't go so well with your partner today, Dina. Sometimes, if they are in a bad mood, nothing anyone says is going to make them feel better about things.
                              Love and hugs
                              Kayleigh xx
                              You're right, of course, Kayleigh. I just don't feel like dealing with his negativity at the moment.
                              Dina

                              Trying to keep positive, but not always managing.

                              Comment


                                #30
                                Well said Kayleigh, and thanks, Lynne x
                                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                                I'm staying positive and taking each day as it comes.

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