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    #16
    Lynne I am in awe of you - getting your bras on and your silk jammies Albert didn't want a ceiling hoist but hey ho he's got one and now knows we couldn't now manage without it - I am now a dab hand with the sling, but

    Unfortunately its not the be all and end all of transfers - I can see what's on the horizon now that his arms and hands are failing - to get him dressed on the bed he can just about help me roll him over on to his sides but this isn't going to last much longer,

    I push him over - he uses the bed lever to pull at the same time - this week the OT is coming to show me how to use a "Slide sheet" pushing him is playing havoc with my shoulders and neck - I cannot imagine that a sheet is going to help me at all but I'll reserve judgement,

    The other thing I find is that even though the back rest of the bed is in the sitting position its difficult to pull him forward enough to get the sling behind his back, we currently use a ladder type piece of equipment but again that's a tremendous strain on my neck and once his hands fail completely this will be a no no,

    it seems you just get one bit solved and another rears its UGLY head

    Sue
    Husband Albert diagnosed PMA Feb 21

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      #17
      Suefromwakey ah, good luck with slide sheet am thanks xx
      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.

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        #18
        Speech therapist and a staff left about half an hour ago. She was impressed with my breath stacking and checked my o2 and pulse, happy with those.

        I told her that I’ve got a little bit more saliva and she said that the corner of my mouth might get sore so use something. I can’t remember if she’s sending something.

        I asked her about my dry mouth, which I feel frequently especially after breath stacking. She’s contacting my gp to prescribe saliva substitute.

        Hoist people next, in a few minutes xx
        Last edited by Lynne K; 25 January 2022, 15:50.
        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


          #19
          Originally posted by Suefromwakey View Post
          I cannot imagine that a sheet is going to help me at all but I'll reserve judgement
          Sue, slide sheets are an amazing invention - like everything, there's a knack to getting the most from one.

          Originally posted by Suefromwakey View Post
          I find is that even though the back rest of the bed is in the sitting position its difficult to pull him forward enough to get the sling behind his back
          Is putting the sling on Albert when he's laying flat in the bed out of the question? Roll him enough to slip the sling under, or perhaps a different sling type? xx
          ​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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            #20
            Oh Suefromwakey I'm not surprised you are in pain with all the lifting and pushing you are doing.

            I have several "snoozle"sheets and I use them for all transfers.... bed , wheelchair, RR, showerchair, loo . Its a 4 ways slip sheet and very easy to pull from underneath me when I've transferred. I say they're my best thing ! ( sad or what ?) but I couldn't manage without them. As Ellie says you do need to get used them as they are very slidey.

            Love Debbie xx

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              #21
              Suefromwakey ask your Occupational Therapist to show you how to position the hoist sling using the slide sheet & rolling your husband.
              It takes some practice but it's a great technique.
              Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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                #22
                Lynne K Really sorry to hear that you are going through so much all at once, it must feel overwhelming, but it sounds as though things are getting sorted one by one. Hopefully the council will approve a ceiling track hoist - we had a downstairs bedroom and the installers simply drilled into the ceiling joists. It is an H-frame track which made it easier than a single track as I could hoist hubby from wheel-chair to shower-chair without having to go onto the bed or be left dangling while I changed chairs.

                I don't know much about standing hoists except that gantry hoists are huge but I think there are different types of smaller portable hoists - hopefully your OT has looked at all the options. It's his/her job to come up with solutions that work for you.

                Suefromwakey My husband detested slide sheets though our OT was mad keen on them! In the end we hardly ever used them - we were managing to roll him (in an almost-flat position, with his NIV on) to dress his bottom half and put his sling on right up to the end, but his mobility was decreasing and I wanted more options so the OT was due to come out again and remind us how to use the slide sheets to get the sling on him in a sitting position. She had also sent some oval-shaped slide boards to help with getting the sling/clothes on when in a sitting position but as it turned out they were never needed. But there are lots of different methods and ways of doing things so hopefully your OT will suggest different ways that suit you both and save your back.

                Husband died 14 months after MND diagnosis.

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                  #23
                  Betty May thanks. They won’t do ceiling hoists because of upstairs flat. But they’re doing brackets on the walls, moving our main light fitting and running the hoists on a track just below ceilings, at least nothing on our limited floor spaces. I need these asap because I’m failing pretty fast now xx
                  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


                    #24
                    Well thanks all - definitely some possible solutions here, now I know this I will be in a better position for the OT visit Friday,

                    Cheers

                    Husband Albert diagnosed PMA Feb 21

                    Comment


                      #25
                      Originally posted by Lynne K View Post
                      Betty May . But they’re doing brackets on the walls, moving our main light fitting and running the hoists on a track just below ceilings, at least nothing on our limited floor spaces. I need these asap because I’m failing pretty fast now xx
                      I remember now that that option was discussed by one of the companies who came to give a quotation for the council. They spoke of the 'supports' (can't remember what they called them) that are fitted onto the walls as being really slim and taking up very little room so it sounds like a good option for you.

                      They had to change our light fitting too.

                      Hope this happens for you quickly. We only got ours in the nick of time really, getting in and out of bed had become really stressful - hubby used to plan each move with military precision. He used to transfer sideways from a manual wheelchair/shower chair onto the end of the bed, and then using the hated slidesheets, move slowly up the bed until he was in the right place for me to swing his legs round, trying to support his back at the same time. xx

                      Husband died 14 months after MND diagnosis.

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                        #26
                        Betty May thanks, I certainly do hope that they do hoists quickly but they gave the idea that it will be many weeks xx
                        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


                          #27
                          Just ate 2 poached eggs on toast and a vegan yogurt, with my dodgy hands and mouth but cut my meal just about etc xx
                          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


                            #28
                            Originally posted by Lynne K View Post
                            I certainly do hope that they do hoists quickly but they gave the idea that it will be many weeks
                            Oh no Lynne, I really hope it won't take many weeks... 😟🤞🤞😘
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #29
                              Ellie yes thanks Ellie xx
                              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


                                #30
                                As well as poached eggs on toast for lunch today I have beans on toast for my evening meal. Now more breath stacking as worried about my breathing xx
                                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.

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