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    Care

    The time has come for me to ask for help. But what exactly does a carer do? Do I have control or am I controlled? Do they come with a returns policy? What happens if it breaks down? Is there an off button? Will I still be me? 🤔🤔
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

    #2
    I can’t and your query Mathew but good luck with finding an appropriate carers package for yourself, Lynne x
    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
      Sorry darling I didn't quite understand the first bit? 🤔
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

      Comment


        #4
        Hi Matthew,
        Can I ask if you are getting support from your hospice team now.I only know for myself if my breathing was causing me the problems and distress you are going through I would be contacting them for advise and support.(I am aware you don’t have speech) but surely you can email them?
        In terms of carers..my suggestion would be really think about the help you need daily..ie personal care.
        Then there is the financial implication which is complex. Again the hospice team could assess if you qualify for free care under The Continuing Health care Criteria.
        If not you could be eligible for a care package via social services which is means tested.If you have savings over a certain level you would need to fund carers or contribute financially to care.
        If you have the means to self fund your own care as you have savings over £23,250 you can source your own care package or ask social services to help you to source it.
        Carers can’t always stick the to times you prefer and of course you might not get on with some of them.
        I really hope you can get a hospice team or community palliative care team be involved as you sound so desperate on your posts and distressed to the point of attempting suicide.
        People Care Matthew but you are now recognising your breathing and no doubt other symptoms are affecting you mentally and physically.
        I know you have not had positive experiences but please reach out to your local hospice as soon as you can to try and alleviate your anguish and get you some help.
        I personally find it distressing that you seem to be almost alone..I can only imagine how terrifying that must be without regular reliable support.
        Please don’t come back at with with negative comments ..just make a plan to seek professional help ASAP.
        Best wishes
        Mary

        Comment


          #5
          What care team? I have had one voicemail from my local hospice followed by a rude letter. Then my friend phoned but was told it was the wrong number and emails would be sent. This was two weeks ago. No contact since. Is it cos I am black? 😢
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

          Comment


            #6
            Hi Matthew ,
            Which hospice should you be linked to.?Don’t give up.Also contact your GP via your friend and explain that you urgently need to be linked to the community palliative care team or the hospice ASAP and how distressed you are by breathing difficulties to the point of recent attempt to end your life and need for hospitalisation.
            If no joy get your friend to speak to the practice manager at GP surgery.Is your friend somebody you want to speak on your behalf?If so a letter to GP stating this is your wish is necessary with your signature.
            It beggars belief that you are not on the hospice or palliative care teams radar.
            Its difficult without speech so I suggest that’s included in your letter to GP , GP practice manager and hospice.
            Keep it factual ie what current symptoms are and what difficulties you are having accessing any support compounded by inability to speak.
            I worked for a GP practice so know letters are scanned into your records and practice managers have power to get things moving.
            I know I come across as a bit bossy but can only say I found it very distressing that you on several occasions have written on here about ending your life.I hope with a regular point of contact (via email or text) you can then get ongoing support to enable you to have better symptom control and less stress.
            Best wishes
            Mary

            Comment


              #7
              It was my GP that referred me in the first place but today is a holiday init? 😞
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

              Comment


                #8
                Yes.I have sent you a private message.
                Mary

                Comment


                  #9
                  That’s not good Mathew. Could your OT get in a your local hospice on your behalf? Lynne x
                  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


                    #10
                    If I knew who my OT was I would have txtd them first. 😁
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                    Comment


                      #11
                      Haven’t you had a regular OT? If not get in touch with either your MND neurologist team’s specialist nurse who ought be able to find out which OT is assigned to you. Or the local team based at your Local Authority. Obviously hard with no speech but hopefully your friend can assist with it, Lynne x
                      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


                        #12
                        Matthew do you receive any support from the Community team? OT Physio Respiratory team nurse? If not did you ever have support at the beginning?

                        I have received a Personal Health Budget in the past which has paid for a PA Personal Assistant and I have employed self employed carers. I now have Continuing Health Care and it does the same.

                        You can employ a care company of which I have no experience but others on here do especially Ellie.

                        I have found PAS by going to our local county council website and they have a section for PAs to advertise. I prefer this because I want someone who is an experienced carer ,happy to treat the house as their home and do whatever needs doing ie cleaning laundry looking after the dogs and running errands to the chemist or shops. I need someone who is experienced and used to speaking to health professionals and happy to take me to appointments if my husband is working. If they cook that is a bonus for the family and obviously someone who is good company.

                        I know that is quite a list but there are lots of people out there.
                        You need to make a list of what you would like to have help with.

                        You are in control of the hours. Sometimes PAs work in pairs which is quite useful if one is off sick.

                        Good luck Matthew xx

                        Comment


                          #13
                          Hi Matthew

                          [QUOTE=matthew55;n50375]The time has come for me to ask for help/QUOTE]

                          Yes me too.

                          I am lucky in that my wife looks after me at the moment but over the last 12 months my needs have become greater and we think she needs a break before she breaks!

                          So we have some experience of carers in as far as we watched my brother-in-law organising care for my now deceased father-in-law so have some ideas of the pitfalls around being put to bed too early and all that kind of stuff.

                          We have a contact with our local hospice but they will only provide care to me if I am with about 3 months of dying and I suspect I have a few years yet. They talked to the adult care team at our city council who I have also contacted myself and they've yet to come back to me 4 weeks later.

                          I have also had a telephone call from my local social prescriber who seems to be linked to my local GP practice – she also had some suggestions about where to get advice on care and also said she would hassle the adult care team for me.

                          In the meantime, I've sought advice from my local group and ended up with a guidebook to local care services which seems to be provided on a countywide basis, paid for I suspect by the care industry. So I'm going to make a couple of telephone calls tomorrow just to try and find out how the land lies and then see what happens if and when the adult care team get back to me

                          Have you talked to the MND helpline about all this as they were helpful to me in getting going as well?

                          Warmly


                          Andy

                          ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

                          "Things turn out the best for people who make the best of the way things turn out"

                          Comment


                            #14
                            I apologise if this has been answered but what I was after was, am I in control of when and what care I receive?
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                            Comment


                              #15
                              You are in control of what carers are there to do so, first thing I did was to write down what help I needed and what I did not need, and gave it to care providers. The more they know, the quicker they can say yes, no or maybe. Not all providers will admininster meds or go near feeding tubes.
                              Don't accept half-service, it's not worth it.

                              You need to be honest, open, realistic and, to some degree, flexible. For example, wen I first started with my current provider, they could not give me the exact times I wanted but said they'd do their utmost to accommodate me - it took 2-3 months but I liked the company's ethos, so was willing to wait (the company train all my carers to do all my meds) Make them aware now of potential future needs.

                              You may find you fall on your feet with the first provider or it may take a while, there will be teething problems, but generally you get back what you put in, with bells on.
                              ​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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