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    #16
    My husband fell downstairs backwards too. It was the catalyst for moving the bedroom downstairs. Very scary to think what would have happened f he was further up the stairs He fell into an assorted display of cactus (cacti or cactusses????) which provided some amusement afterwards but frightening at the time and struggling to get him back up.

    We have a wetroom downstairs now too and he didn't learn about attempting to walk around on his own Had two more falls in the same week, fortunately only minor scrapes and I helped to break his fall on another occasion - I knew he was going so tried to stop it being too heavy a fall. Thank goodness for young strong neighbours and sons who got him up.

    Now completely immobile so at least no more falls. small mercies.

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

    Respiratory and blood gases still within normal range.

    No speech but sense of humour still fully intact.

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      #17
      MMG sorry to hear your husband did this too. We are about 3 weeks away from having the downstairs bedroom and wet room ready. Builder started the extension 10 weeks ago and has made great progress. He has been absolutely brilliant. Xx
      Carer for my husband who was diagnosed with ALS on 15.12.21.
      Trying to think of only today and tomorrow
      Alison ♥

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        #18
        Stephen fell on the outside stairs with his legs crumpled underneath him. This happened Thursday. Now he can't walk or use his arms. I have no hoist and my request for a commode chair 2 weeks ago I haven't even had a reply. I'm using an outside wheelchair indoors and it's not easy trying to move him from chair to toilet. I can just get the chair through the doorway. I'm dreading getting out of bed this morning and I doubt if he will ever have a shower again.
        when i can think of something profound i will update this.

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          #19
          Oh no, you three poor wonderful carers, what a struggle you have. Only hope you get loads of help today Denise, and the finish of your adaptations come quickly Doggymama x
          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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            #20
            I've made phone calls to the OT reception desk at derriford but they work office hours. They have a 24 rapid response OT team but no phone number.

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

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              #21
              denise This is awful.

              We had a safeguarding referral put in by the ambulance service (with our permission) when they came out for a suspected stroke and were disgusted with the level of carer support we had at the time.

              Lo and behold, the following week we were contacted by social services and reassessed and more appropriate care support was put in immediately. Perhaps this is what you need?????? The relevant authorities have to take these seriously. Not that it should ever come to that..

              Any health or social care professional can make a safeguarding referral I believe, not sure if you can?

              I found this on the Internet, not for my own area, but there will be the equivalent services in all areas.

              I would say your husband is at risk of neglect by local services.

              I was a bit concerned initially when the referral was made for us but it wasn't saying I was neglecting him, it was that he was being let down by social care.

              https://www.google.co.uk/url?sa=t&so...6qAEvNLpHxe_oT


              Hope the link works
              Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

              Respiratory and blood gases still within normal range.

              No speech but sense of humour still fully intact.

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                #22
                So awful to hear how some of you/ your loved ones ate falling. Despite several falls I seem to bounce or something and just end up with a few bruises.

                denise - so sorry to hear how you have been left to muddle through. Makes me so cross that people with MND and their carers are treated with so little concern.

                Sending you all positive thoughts for no more falls and proper timely support 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.

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                  #23
                  Im so sad to read of these dangerous falls. Its such a shock mentally and physically to the mnd person and the carer.

                  The OT should be looking at ways for safer transfers as a matter of urgency. If social services won't act quickly maybe an urgent GP referral would help. Hugs to all xxx

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                    #24
                    denise oh Denise. How you managing to move Stephen on your own! You’ll do yourself a injury, please take care. Do you think Stephen is unable to walk due to the fall where he has hurt himself or due to his weakness from MND. Really hope it’s due to tenderness and that he,l be walking again soon. I’m dreading if and when my husbands legs become more weak as I’m able to manage his care by myself at present, like you. Hope you get some joy this week from O T xx

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                      #25
                      denise I'm so late logging on today Denise and am very upset to read what you and Stephen are going through 😥😥

                      If he were to find himself in A&E tomorrow for whatever reason, he couldn't be discharged without proper equipment - that's where you'll find those elusive OTs... 🤗🤗😘😘
                      ​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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                        #26
                        denise I hope you get the support you need, hope you are both OK x

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                          #27
                          I've left messages every where. He seemed more able to move late afternoon but he was complaining of not even being able to lift himself in his chair just to get comfortable. Its upsetting how things go bad so quickly.
                          😕
                          when i can think of something profound i will update this.

                          Comment


                            #28
                            denise - I'm so upset to hear you and Stephen are still struggling so much. I really can't believe you don't have equipment or help to enable enable it Stephen. But then I am also aware from my own experience that it's too easy to become invisible to services.

                            I hope he is feeling less sore and a bit stronger today and that you get get hold of someone to help you tomorrow. I'm so grateful for being so small sometimes, I do think it makes certain things easier. If my hubby was the one with MND I'd be totally unable to move him x
                            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


                              #29
                              Thanks tiny lady. We seem to struggle to get anything. It's bad enough we're not trained to do what is needed but we struggle to get equipment to make our lives easier. We shall see what today brings. 🤔
                              when i can think of something profound i will update this.

                              Comment


                                #30
                                denise fingers crossed 🤞 xxx
                                Diagnosed May 2021 bulbar onset als.

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