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    Changing Beds

    Hello,
    I’m writing for some advice. My husband has ALS which seems to be progressing quickly and is reducing his mobility rapidly.

    I currently help him get in and out of bed as he cannot do this himself anymore. Our support team have been incredible, and conversations are now turning to getting my husband a profiling single bed. We don’t have enough room
    to have a profiling bed and our double so it might have to be two singles.
    this breaks my heart as we are only 32 and 33 and would like to remain together as much as possible.
    Please could I have some advice on what others have done?
    MND has taken away so much of what we had already, and sleeping in the same bed together feels like the last normal thing we have. I really would like a small part of this to stay the same for us both, but also make sure my husband gets everything he needs and deserves to be comfortable and happy.
    x

    #2
    Willow - I have recently been through this dilemma and avoided the profiling bed because it was so sad to accept the changes. But in the end we had no choice and the profiling bed brings so many positives for me in terms of comfort, getting in and out, no pressure sores.

    We are in our mid forties, so I also was upset about going to 2 single beds. But its been ok. We bought hubby a single with quite a minimal frame (needed something cheap as its all extra cost). We have this right alongside my profiling bed and chose some lovely new bedding, duvets and blankets so it all still matches.

    It isn't the same but actually I am so much more comfortable now. We are still next to each other xx
    Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

    Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

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      #3
      Hi willow. Its horrible like you say re mnd taking things away.
      I hated it but the profiling bed was the only answer.

      We have 2 singles not together as we need room for my wheelchair.
      Diagnosed May 2021 bulbar onset als.

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        #4
        Ann remained in our double bed throughout ( she did try profile beds a couple of times but couldn’t take to them so sent them back ). We managed head and leg adjustments through a series of pillows and cushions. I also found slippy sheets combined with silk PJ’s allowed for easy turning and general positioning.

        I guess we were lucky because even with the double bed ( we did have to downsize from a king ) we still had room to operate a hoist.

        The big plus for us was that I could lay next to her during the final days.

        As the famous Ellie always says “ there is not right or wrong way”

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          #5
          Originally posted by Willow View Post
          I currently help him get in and out of bed as he cannot do this himself anymore. Our support team have been incredible, and conversations are now turning to getting my husband a profiling single bed.
          Myself and my Wingman shared our double bed for all long as possible until carers needed access on both sides of the bed for better and safer manual handling. We put the double bed on blocks to have it at a better working height.

          It would be quite normal for paid carers to insist on a profiling bed to save their backs so, if he has carers now or in the future, the decision may be made for him... 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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            #6
            We had a super king size bed which split into two singles so when he couldn't get upstairs anymore and the dreaded day his hospital bed arrived I moved down into the dining room with him. We had his and my bed pushed together until we had to start using a hoist and needed room in between the two beds to transfer.

            However, as the hospital bed was on wheels, the beds were still pushed together each night for some level of normality.

            There wasn't much room, and it wasn't easy in terms of space around the bed, but we didn't want it any other way.

            We had to change the direction the beds were facing to fit the gantry hoist into the room but we found a solution - possibly not would have met all of the rules and regs, but it suited us and the PA's were happy with it.
            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

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              #7
              Hi Willow, I'm so sorry to hear about your husband's progression. My parents shared the same bed for 45 years and also couldn't bear the idea of not being separated. They ended up getting two single profiling beds next to each, single duvets etc., with more room my mum's side for her wheelchair and for using the ceiling track hoist.

              I was able to use the hoist on my own with only one side of the bed (not sure that would work for everyone).

              They had endless hours of amusement going up and down at different times!

              I could also move the beds apart to get a little extra room on the other side, which was helpful on occasion for the nurses.

              My mum continued to use that bed until a few short weeks before she died. At that point, the nurses arranged for a hospital bed in the sitting room.

              I hope you find something that works for you both. It's so important I know, when so much is taken away.

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