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    Is there anyone out there?

    Yesterday I was in the situation where we were stuck. Unable to get up or move. Safely sitting but not supported in any meaningful way, just sitting - and I am not physically strong enough to help him up. It was Sunday and my options appeared to be leave him there for 24 hours, or potentially try and help him up again and again until we all fall with the danger of hitting heads on metal, ceramic and a hard floor and then really needing the 999 call.

    Up until now my husband has been able to get out of seats though it has been getting more difficult. This time he was stuck - I did not want to call 999 as this was not life threatening. GP no longer answer or help at weekends so that left 111 but they really did not want to know. ( Pull somebody out of a hat - even when I explained my situation - No local family) What do you carers out there do /contact when you are at a point where your loved one is safe but stuck and moving them could potentially be hazardous and then you will be able to make the 999 call.

    How do you get "just a helping hand" out of the situation? Does anything exist who you can call and say please just help? This disease suddenly takes muscles away and abilities to do things just go. When you do not want to light the blue touch paper is there anyone who you can call to help or do you have to leave them for the 24-48 hours over the weekend stuck?

    It seems ridiculous that you have to create a bad situation ie a fall to get help when all you need (suddenly) is just a hand.

    Does everyone else have so much equipment that they are never in this situation?

    Chiaroscuro it’s a dreadful situation that you found yourselves in and why does it always happen at weekends.

    You are right having the correct equipment is key to you both navigating a safe environment. I’m hoping you have access to an occupational therapist (OT) in which case I would recommend arranging an urgent assessment of immediate and future needs. In my experience you may need to use the phrase at risk to get an immediate response but don’t be afraid to do so.

    In the interim do you have a neighbour that you could call on if not I would dial 999, they have the right equipment to safely get your hubby up. The problem these days is could easily wait 12 hrs for an ambulance crew to arrive.



      I am sorry to hear about your husband getting stuck in his chair 😔

      I need to ask this….but have you had some help from an occupational therapist to look at the handling needs for your husband? Depending on his requirements there are different items of equipment out there to help him. These could range from items to help him get from a sitting to a standing position or a rising chair to again help him out off his seat through to something more substantial like a hoist if he is no longer able to weight bear.

      In terms of people to call you are really limited to friends, family and neighbours because you really should not be in this position where somebody is stuck. I strongly suggest you make an urgent call to his occupational therapist to assess his needs and get something delivered to your home to help him.

      Take care, James
      Foxes Never Quit 💙


        A warm welcome to the forum Chiaroscuro

        In an Ideal World, your husband would have a proactive Occupational Therapist in regular contact and provide equipment just before it’s actually needed. But yes, it’s not unheard of to call 999 if a person is stuck!

        Originally posted by Chiaroscuro View Post
        Up until now my husband has been able to get out of seats though it has been getting more difficult.

        When things like this start happening, it’s time to contact the OT and arrange a visit and assessment as a matter of urgency. In his case, perhaps a rise recline armchair is the answer and/or a walking frame or stand aid.

        Actually, does he even have an OT 🤔

        Love Ellie xx
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


          I haven't been in this situation so far as Dad's symptoms have been bulbar primarily (speech, swallow, secretions etc). We're now in the process of getting adaptions and seeking care due to the physical deterioration.

          This condition is hard and the more support you have the better. Hopefully you can get the right equipment through the OT as suggested. However dont be afraid to call on friends and neighbours in times of need. Hopefully there are friends willing to help but may not be sure how they can help.

          My husband is a wheelchair user and if we've been out and needed some help (say a fall out of his chair which is thankfully rare) I've often had offers of help. I never used to accept thinking I had to be able to do it all. Now I happily accept others kind offers.


            Sorry to hear you found yourselves in that situation.
            I agree with what the others have said about getting an urgent appointment with an O/T. You could maybe ask them about something like
            Careline. Where you have an alarm that you can press and they come out to you to assist with such things as falls and being unable to rise. I believe
            they have special equipment to help with lifting (like little air bags).
            It was suggested to us in case of falls, but unfortunately my husband is bed ridden now so we don't need the service.
            Good Luck. Hope you get some help soon


              Our situation 2as similar on that it suddenly became impossible to help Dean out of a chair, but that was because I broke my leg which severely impacted on how I helped him to move. By that time we did have 3 thirty minute calls from carers each day, but they are not allowed to manually move anyone so not much help in this situation.

              We were lucky in that our OT was really on the ball, and I emailed her on the Monday morning and although she was on annual leave she arranged for a colleague to drop off a Molift. This made so much difference - it didn't go back when my leg healed as it was the answer to the mobility problems at that time.

              When he did actually fall over I was lucky that I could call on my sons (who are big strapping men) to help, or on one occasion when he fell up a tiny step outside the front of the house - the next door neighbour hauled him up to kneeling position and then we could both get him up from there.

              You should be having regular assessments so that equipment is modified as needs change.

              Good luck x
              Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

              Sense of humour intact throughout.

              Sadly passed away peacefully 2/9/22