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Night times, how do people cope?

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    #16
    Hi Marj
    Hope last night was a better night for you? Disturbed nights are awful and affect how you face the next day.I hope you have got the determination to insist and initiate some changes to improve your quality of life and your partner gets the message.
    Best wishes
    Mary

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      #17
      Hi to you all,
      I'm so glad I poured my heart out to you, it does help to know others have experienced the same problems. I've struggled so much with guilt. I keep going back to the fact that he is in a worse place than me, so I should be able to keep looking after him? But it's certainly harder than I thought.
      Last night I was up 4 times, and each time he was saying how sorry he was to get me up, which somehow made me feel even worse. We'd had a chat yesterday and I'd told him I can't keep this up and we must look at getting help. His response was not quite agreement, more a reluctant acknowledgement.
      I'm now a bit clearer headed this morning, so before I run out of steam I'm going to start sending some emails.
      I'll keep in touch and update you all
      Have a good day..........the sunshine does perk me up, thank god something does eh!

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        #18
        Good on yer Marj
        Husband Albert diagnosed PMA Feb 21

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          #19
          That’s it get cracking on finding some night care..maybe try palliative care team or hospice first .Sounds like you are more determined to make some changes.If you get night care options , costs etc and explain to your partner this will need to be in place ASAP he may then come around to it.Guess you need to keep strong as all you are trying to do is get the help for him that enables you some decent sleep.Good Luck
          Mary


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            #20
            Marj, interesting to read your account, I can absolutely empathise with you. For the last 10 months I have had a similar experience. We have been forced to covert our dining room in to a bedroom. My wife (Caroline) has a hospital bed and I sleep on a blow-up bed. Sadly she can no longer use her arms or legs. After getting her into bed I need to turn her every 90-120 minutes as the pressure on her hips is so painful because of her immobility. I use a slide sheet but this is difficult as a sole carer. Needless to say short power naps through every night before seeing to her every need (washing, dressing, feeding and personal care) during the day on top of running the house and still working is utterly exhausting.

            I do wonder how you and others manage.
            Husband and carer to my wonderful wife diagnosed with ALS Oct 20.

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              #21
              MartinB Forgive me if I asked you before; do you think Caroline would need to be regularly turned during the night if she had a more comfortable mattress? 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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                #22
                Originally posted by Ellie View Post
                MartinB Forgive me if I asked you before; do you think Caroline would need to be regularly turned during the night if she had a more comfortable mattress? xx
                Hi Ellie, we are on our third bed now. It is a hospital bed of course, we have a added memory foam topper and pillow. The problem seems to stem from the slide sheet that often ‘crumples’ under hip once she is in position. As she can’t shift off it it gets sore. I have experimented with different slide sheets but still struggle.
                Husband and carer to my wonderful wife diagnosed with ALS Oct 20.

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                  #23
                  The bed sheet must be firmly tucked in and be flat and not skew-whiff. I didn't realise it is a skill to make a bed until I met my carers.
                  Copyright Graham

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                    #24
                    MartinB Ah, I see! It could be a chicken and egg scenario - is the slide sheet needed to reposition Caroline during the night, but that same slide sheet ends up crumpled underneath her, requiring more repositioning 🤔 I wonder if the slide sheet were removed after she got into bed, would she still feel uncomfortable, even on an alternating air mattress...

                    I'm sure you're both experts on slide sheets by now! and I presume it's not a narrow enough nylon one Caroline sleeps on atm - if you haven't yet tried... there are ones which you can remove by pulling against the slide, so Caroline wouldn't move from where she was placed (the hospice uses this type on me when I stay) and 4-way slide sheets, which tend to be bigger, and may tuck in under her mattress.

                    The OT should provide, or at least know of, a comfortable solution.

                    Good luck. 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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                      #25
                      https://www.thesnoozle.com/

                      Hi Martin,
                      I'm not sure if this will help you as you've tried lots of different slide sheets.i use the snoozle to help me slide onto the bed from my wheelchair and then to get comfortable. My husband then pulls it away from under me , hopefully taking care not to pull me with him!!. I sleep on my back all night with lots of pillows round me. I can't turn myself but I can repositione my top half and I am relatively comfortable. Im very reluctant to wake my husband in the night although sometimes I have to.

                      My OT could only provide full slide sheets which I didn't want so we found these.
                      I hope you find a solution to help you,
                      Love Debbie x

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                        #26
                        Nice one Debbie, thanks for posting the link.

                        They're the 4-way ones I mentioned, but didn't know of any brand names. 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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                          #27
                          We used a satin sit and slide base sheet together with satin PJ’s for Ann. It worked a treat for use. I could easily turn Ann by simply putting my hands on her hips. I slide her from one side of the double bed to the other. We bought them ourselves for around £50 each. I have tried posting a photo but the website is having a funny turn ( no pun intended).

                          here is the link to the website. https://www.nrshealthcare.co.uk/mobi...-transfer-aids

                          the actual name is sit and slide travel sheet. If you access the link and scroll to the bottom there is photo of a lady sat on the side of the bed. The one shown is a single at £40

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                            #28
                            Originally posted by MartinB View Post

                            Hi Ellie, we are on our third bed now. It is a hospital bed of course, we have a added memory foam topper and pillow. The problem seems to stem from the slide sheet that often ‘crumples’ under hip once she is in position. As she can’t shift off it it gets sore. I have experimented with different slide sheets but still struggle.
                            I wear silk pjs and have very slippery (expensive) cotton sheets. At the moment this helps me to turn myself (grabbing the bed guards each side). But will make it easier when Steve has to help I think. Would this strategy help you to turn Caroline? Lynne x
                            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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                              #29
                              Originally posted by Deb View Post
                              https://www.thesnoozle.com/

                              Hi Martin,
                              I'm not sure if this will help you as you've tried lots of different slide sheets.i use the snoozle to help me slide onto the bed from my wheelchair and then to get comfortable. My husband then pulls it away from under me , hopefully taking care not to pull me with him!!. I sleep on my back all night with lots of pillows round me. I can't turn myself but I can repositione my top half and I am relatively comfortable. Im very reluctant to wake my husband in the night although sometimes I have to.

                              My OT could only provide full slide sheets which I didn't want so we found these.
                              I hope you find a solution to help you,
                              Love Debbie x
                              Thanks Deb, I’ll give it a go

                              Husband and carer to my wonderful wife diagnosed with ALS Oct 20.

                              Comment


                                #30
                                I recently bought the sit & slide sheet it has helped me and I don’t seem to sweat as much too 👍
                                Janette x

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