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    Are my expectations too high?

    I'm just being pathetic, feel free to ignore me, but I feel really lost at the moment. I have no idea who is supposed to be helping support me. But nothing much is happening and I'm scared.

    ​​​- DS1500 provided 3rd December with urgent referral to council adaptations team, social services (again), OT's, wheelchair services.

    - Been requesting care assessment since mid 2021 (finally done in Feb 2022), 35 hours awarded. Not a single hour provided.

    - Hubby chased daily and got my powerchair February 2022 (I was no longer safe walking)

    - Released from hospice stay Feb 2022 with assurances of carers, adaptations, urgent and continued support. Just got endless appointments and phone calls etc.

    But NOTHING has happened. Apart from my powerchair, a temporary ramp that has to be lifted each time and a grab rail on my bed....

    No carers, no adaptations, no answers to massive list of questions for an OT (I've given up now), no aids around the house that we haven't found out about and purchased ourselves (mainly thanks to advice and info on here).

    Lots of people visited or phoned in January, made promises.... then NOTHING happens.

    I am so worried about the adaptations the council are suggesting (they don't seem right) and I have to pay a massive chunk.

    I can't sit or sleep comfortably. I can't do anything independently and I can't even make or move a drink whilst in a powerchair. Loads of simple things.

    My husband works full time (runs the house and children now too). How on earth am I supposed to manage? I can't even leave my own house without help as the 7ft portable ramp needs my husband to place it (assuming he is here).

    Why does no one tell you that you get left to muddle through? What am I missing? Should it be this hard? Am I doing something wrong? Expecting too much?

    I am doubtful I will have a PEG now, because who will look after me/ it?

    Is everyone also finding things this hard to navigate? I have poor speech, I can't walk any more, my left hand and arm is about 40% functional and my right about 80%

    I'm trying to stay positive but every now and again I get really scared. I'm exhausted and waiting for someone to come and take over, so I can live my life...

    Just send me a hug xx

    Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

    Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

    Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

    #2
    I wish I could say something positive but tbh I have not had a great experience either. But I am not in your position yet. I gave up my hospital bed after being put in pain whilst waiting 3 months for a mattress.

    I chase every late test result etc and every department. Its poor.

    I am in your physical stage but I'm lucky that my partner works from home.

    I thinks its time you ask the mnd association to get involved and also the care quality commission. Start with your g.p and ask that you want your case discussed at the next mdt meeting and that you expect answers. Its time for complaints xxx
    Diagnosed May 2021 bulbar onset als.

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      #3
      Sorry to hear about all of this, it’s not as if we haven’t got enough going on already is it ? 😢😢😢😢

      Quick question….. I am assuming the Care referral was done through your social worker? if so have you been back to them?

      James x
      Foxes Never Quit 💙

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        #4
        TinyLady Not sure I can say anything to help (in the middle of my own battles to get help) but wanted to send you a big hug 🤗😘

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          #5
          TinyLady have you tried contacting the connect team and asking to be put in touch with your local area support coordinator. They in turn might be able to fix you up with a dedicated AV ( Association Visitor ) alternatively feel free to PM me and I will try and get the contact details.

          In terms of battling to get things even those already agreed I’m sorry to say it’s an all to familiar story.

          Keep fighting.

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            #6
            Is your care being funded by CHC? That would give you some control. We've never had much to do with Social Services, but what you need is access to funds.
            Have you tried the MND helpline, they are a mine of information.

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              #7
              shelly21 - who are my MDT team? I rarely see my GP. I have a palliative care consultant, who is supposed to have an OT. But they have been off sick since 3rd January and the locum replacement works 2 days a week and does nothing. I find a chocolate teapot more useful. So no idea who to ask. They have a physio too... but not heard from then since hospice discharge in Feb either.

              I have contacted MND Association for help. They chased OT via email (just like I have been doing for months). Nothing happened! I had a visitor come end of Feb. Texted a couple of times. Just referred me back to the chocolate teapot OT. Nothing happened. Not seen or heard from her since.

              JamesW - I have ever changing social workers who I chase every week. But they text back it is hard to find carers....

              Thanks all for listening, I think they use covid as an excuse to never visit and I can't phone. So easy to avoid me.
              Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

              Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

              Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

              Comment


                #8
                Oh Tinylady
                a big hug from me.
                You know about my struggles. It's like every day its something else and rarely do I get anything sorted.

                I'd try and get OT and social worker around your home and you and your husband tell them what you need.

                Lots of love
                Denise xxx

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

                Comment


                  #9
                  Bowler - yes had/ have? an AV but they came once and then said OT needs to be helping me. I know that... but I can't just create one sadly!

                  Music man's wife - yes, I think it is CHC funded. I was told to do adverts for a couple of PA'S- which I did in February. But not a single applicant. So I asked for ANY kind of care package, just anything to help me get up safely and a drink and breakfast. But been chasing for weeks with no success or useful update (all via text).
                  Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                  Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                  Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                  Comment


                    #10
                    denise - I know, it's a massive struggle. I can't help feeling lost because I am also supposed to be running a home and looking after two teenagers, one of whom is also in need of a lot of care and support. My husband is working so hard now to do everything.

                    The OT came once in February and I have asked her to come back several times. I don't think she has experience of MMD at all. She doesn't seem to understand that I need ongoing support as I change so much.
                    Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                    Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                    Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                    Comment


                      #11
                      TinyLady It's time to kick ass, even though it will take up too much time and too much precious energy...

                      Start with the hospice seeing as they discharged you into promises - they should have a Social Worker who can take ownership of your situation: email, email, email them, copy in MND Connect and anyone else who you think might have clout, until you get somewhere.

                      If the squeaky wheel get oiled, you need to squeak and squeak and squeak...

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

                      Comment


                        #12
                        Ellie - I have no idea who has any clout. No one seems to be doing anything very much... so then I naturally assume I must not be ill enough/ important enough/ expecting too much or no one believes me.

                        I am torn between chasing constantly and being tired, stressed and miserable, or, giving up on it all and going out with a bang before it gets even more scary xx
                        Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                        Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                        Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                        Comment


                          #13
                          Oh dear TinyLady - my experience is very different. My OT and MND team based at the hospice are brilliant. GP about as much use as an ashtray on a motorbike. BUT from past experience I would recommend emailing your MP and local paper. I’ve had some success doing that with other issues including tax office. Sending you hugs, love and prayers.
                          Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

                          Comment


                            #14
                            Hakuna - thank you lovely, my GP is kind, but only does what I suggest. Too many things I don't know, so can't ask for!!

                            The OT linked to my hospice is AMAZING and experienced. I met her once and thought... finally I can relax. But that was the day before she went off sick and I've had a few different locum ones since 4th January and they have either been useless, or in one case so thoroughly unpleasant I ended up in tears begging her to leave me alone. I've lost all confidence in being cared for now.

                            I'd feel bad going to the papers, but maybe I have no choice.
                            Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                            Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                            Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                            Comment


                              #15
                              Shame often has a quick response I’ve found but don’t discount your MP. He is there to support you.
                              Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

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