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    Beds

    Question/s: What bed does everyone have? (Similar to the lounge chair situation, beds are another costly piece of furniture and with a move due in December, trying to get organised)

    I have found that our charity won't provide grants for adjustable double beds? The explanation was:
    'Just to make you aware the grant committee won’t approve a grant for a double bed as this poses health and safety issues around carers accessing the patient'.

    But I am the carer and we wanted a double bed to carry on as normal as possible. Also on their grants list is the words 'double beds'. So I was/am pretty confused. So I don't think we can get a grant unless it's a single. I have enquired around for half and half options where have is adjustable and half normal bed that can attach together.

    Something like this link below would be a dream. But pricing is without mattresses, so unless a lottery win, this is just not doable:

    https://opera-care.co.uk/collections...34440944058504

    Would be keen to hear how other couples sleep?


    Tess x


    #2
    One thing Tess, before you go spending your life savings, you see how that divan-style bed almost skirts the floor? If he needed a sit-to-stand hoist, its legs have to fit under the bed. You could put the bed on wooden blocks or look for a different style of bed.

    Check out Laybrook beds too - you're looking for 'dual beds'.

    Does MND Scotland give grants, like the MNDA?

    I sleep in a single profiling bed - the man decided a long time ago that he'd rather his own room!

    Good luck!
    ​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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      #3
      Ah good point. I'll check them out.

      Well actually that was the response I got from them earlier today that they wouldn't accept grants for double beds..

      Ok, I did wonder if everyone tends to go down the single bed route. You see it's him that doesn't want his own bed, I did suggest this though. Possibly as he likes to spread out if I get up earlier in the morning. We do struggle with covers getting trapped every time he wants to roll over, but getting used to this now. Sometimes half asleep I reach over and untuck the covers even though he hasn't asked...doing this in my sleep now haha.

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        #4
        My husband was given a "Hospital Bed" when he had another bad fall in June - had to get the ambulance crew out to get him up so not sure if that played a part - all I can say is within 2 hours the bed arrived - its a single and he's now in what was our dining room as they are quite big, but that's next door to where I sleep so he can shout me if needed. I keep the doors open.

        When I "Self Referred" last year I can only say that our local council have been absolutely excellent in providing equipment and they are fitting a wet room at the end of the month

        Sue

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          #5
          Hi Tess, we are still in our double bed but fully aware as the disease progresses we may need to change to a hospital single bed for me available via the NHS .My husband said he will have another single bed put in the same room as we want to be together .Also our double bed will need to go before I get to the stage of needing hoisting as another post said the standing hoist needs to be able to get legs under the bed. Also if I need carers its easier for them to turn me etc if I move to a single bed. For the moment we are glad we can cosy up together as thats how its been for 44 years.Its so hard at time to except our houses have to change to accommodate our needs. I am due the through floor lift in end of this week and wet room end of the month all in preparation for things to come. But first I have to enjoy today.Best wishes Mary

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            #6
            Hi Tess, we were lucky that our OT applied to the MND association for some funding for a laybrook adjustable bed. I like you wanted things to remain as "Normal" as possible for as long as possible and to still have a double bed. However, we decided to opt for two singles pushed together. Listening to the advice of others and thinking ahead we were persuaded this might be best as if we had more carers other than me (which we do), they need to access from both sides and some might refuse to do care on a double bed for this reason - so the beds can be easily separated and pushed back together again. Also be mindful if hoist is needed in the future a divan bed wouldn't be suitable - luckily I got told that before we ordered one!

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              #7
              Thanks for your responses. It would seem that two singles pushed together would be the best option moving forwards.

              You'll never guess what happened which moved me to tears (happy tears I think mixed with everything else) and so I thought I should share the story to reassure everyone how amazing this community is....although you probably already know.

              So I was asking around on various forums about people's opinions on beds and the cost and what arrangements people go for etc... meanwhile in England a lovely girl had devestatingly just lost her mum to MND and was discussing with her dad about how her mum's wish was to donate her specialised single bed to another MND sufferer to help them through the journey. They didn't know where to begin or how to find out who may need a mechanical bed. The next morning the girl and her dad coincidentally saw my post on the forum and sent me a long message explaining the situation. Long story short, but we now have a single mechanical bed about to be transported to Scotland, from one amazing MND sufferer to another.

              I don't know if the family truly know how grateful we are. But recieving that message had me absolutely sobbing. Just knowing that my partner will be comfortable in the new flat is so reassuring, (never mind the financial burden of this) and the family knows exactly what we're going through and the requirements. I'm sure there's other stories like this out there, but it's these gestures of kindness from complete strangers that fill you with hope.

              (We have since had a video call with father and daughter for a good hour, where we all shed tears from grief and anticipatory grief I guess and the odd thing is the fact that we've got this one thing in common, that we're part of this community, I felt so comfortable letting the tears flow)

              Such kindness X

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                #8
                Oh Tess
                I'm crying now. Oh what a lovely story. I am so happy for you both and for the family who have done something so wonderful. There is kindness out there you just hope it finds you.
                love and hugs Denise xx

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                  #9
                  I went and bought an expensive memory foam 'normal' bed to sleep as long as possible like a real boy. I will get the authorities to provide a hospital bed when I need it. Time goes fast enough without help to speed up. 😃x

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                    #10
                    Tess What a lovely thing for 'strangers' to do - outsiders really haven't a clue what life with MND is like for the whole family (lucky them) Such kindness comes from those in the know.

                    Love Ellie.
                    ​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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