Page 3 of 4 FirstFirst 1234 LastLast
Results 21 to 30 of 34

Thread: Getting off the loo

  1. #21
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    2,918
    Elaine, if the hospital bed bed works out (fingers crossed!), leave the commode by your bed so no walking into the loo. If you don't have one, ask OT.

    I use a lightweight fleece blanket over me and an electric blanket under me - low heat & on a timer.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #22
    Forum Member Dude's Avatar
    Join Date
    May 2015
    Location
    Merseyside
    Posts
    2,611
    KC These guys are very handy for turning on a fan, lights, suction machine etc. Stubborn and mnd not good bedfellows. You need to ask for help. Dude x


    http://www.amazon.co.uk/Energenie-Re...lectric+socket

  3. #23
    Forum Member
    Join Date
    Aug 2015
    Location
    Cornwall
    Posts
    155
    Thanks Ellie and dude. Bed has arrived but haven't given it a test drive yet. Yes Ellie I have a commode and Dude I will invest in some of those remote control thingies, I already have one for the TV, works well. I think it's being so stubborn that has kept me going so full but I take your point I will try to ask for more help.

  4. #24
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,479
    No, I was never a boy scout KC;

    I use a thermostatic blow heater for controlling the temperature as well as a fan in summer. Both of them and a light and tape player are on remote switches similar to Dudes and hang on my monkey bar along with a bell switch.

    The tent thing is quite funny but it's worked for me four over four years. The hospice have never seen anything like it and I have had offers for late night parties in it from some helpers there but they talked about bringing in biscuits and crisps. I turned them both down as I don't want crumbs in the bed.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  5. #25
    Forum Member Dude's Avatar
    Join Date
    May 2015
    Location
    Merseyside
    Posts
    2,611
    KC If you lie on your side on hospital bed and put both legs over edge then by raising backrest on bed, it sits you up. Simples. Dude x

  6. #26
    Forum Member
    Join Date
    Aug 2015
    Location
    Cornwall
    Posts
    155
    Bit fed up today. Tried the hospital bed for the first time last night and I couldn't sleep at all. I was so hoping that it was going to be the answer but it was so uncomfortable. I put a mattress topper on top of the hospital mattress to make it a bit softer but it was so hard I could feel every bone on the mattress. The bed doesn't have a frame that you could clip the duvet to but I had it tucked in one side and half at the bottom but I got an a terrible tangle in the night and really thought the end of come . Dude I did manage to get out twice but it was such a struggle because I cannot move my body in the bed, can only move my legs a couple of inches and have virtually no movement in my arms. I can move slightly to the right but not to the left or up the bed, which is a pain because I can't breathe if I'm lying too flat. Then of course when I get back to bed I have to somehow get my legs in,try not to pin my arms underneath me,straighten my position and get some bedding over me if I can reach it using my teeth.

    I'm sure one of you said that you had carers at night, how does this work out for you. I don't know what else I can do now, I'm so desperately tired and weary of fighting everything. I'm sorry to sound so negative when you all seem so positive but I can't see my way out of the hole at the moment. Maybe tomorrow will be a better day

  7. #27
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,479
    Dear KC;

    I don't think that you are negative just realistic. I'm sorry. I have quite a bit of arm and leg movement but there's no way that I could get up and back to bed afterwards and pull the covers over me. I can get up and back in bed but not with covers.

    Other people use pocket spun mattress on the hospital beds, I use the one I was given without the topper. You can get a "Repose" air bed type topper but I've never fancied that.

    If you can't turn in bed then you are at risk from bed sores which are a real joy, so I'm told. They have air mattresses that move by air blowing up different pockets and virtually stopping any risk of sores.

    Do try to get some rest today as we don't perform well if we are tired.

    Hugs, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  8. #28
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    2,918
    Oh whata shame!

    I have an alternating air mattress, set to my weight and circulates air every 1min30. I have it for pressure protection, but it's really comfy too. I am very bony, esp shoulders, back & arms. I wouldn't recommend memory foam as they're hard for a person with limited mobility to move easily.

    I don't have overnight carers. I'm put to bed ~11.30, having had 300mls water w/ night meds. Up at 7a.m. for loo. Fluid intake is >1600mls with 5 loo trips per day! I have a bladder routine

    Maybe some/all of the adults living with you could work on a rota system to help you once per night?

    You need a comfy mattress to be able to sleep, first & foremost. Our lives are tough enough without a proper night of sleep. Tell your OT.
    You also mentioned your breathing; do you use BiPAP?

    Ellie x.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze - No working limbs - No speech - Feeding tube - Overnight NIV.

  9. #29
    Forum Member MNDConnect's Avatar
    Join Date
    Mar 2016
    Location
    Northampton
    Posts
    156
    Quote Originally Posted by Kernowcluck View Post
    Bit fed up today. Tried the hospital bed for the first time last night and I couldn't sleep at all. I was so hoping that it was going to be the answer but it was so uncomfortable. I put a mattress topper on top of the hospital mattress to make it a bit softer but it was so hard I could feel every bone on the mattress. The bed doesn't have a frame that you could clip the duvet to but I had it tucked in one side and half at the bottom but I got an a terrible tangle in the night and really thought the end of come . Dude I did manage to get out twice but it was such a struggle because I cannot move my body in the bed, can only move my legs a couple of inches and have virtually no movement in my arms. I can move slightly to the right but not to the left or up the bed, which is a pain because I can't breathe if I'm lying too flat. Then of course when I get back to bed I have to somehow get my legs in,try not to pin my arms underneath me,straighten my position and get some bedding over me if I can reach it using my teeth.

    I'm sure one of you said that you had carers at night, how does this work out for you. I don't know what else I can do now, I'm so desperately tired and weary of fighting everything. I'm sorry to sound so negative when you all seem so positive but I can't see my way out of the hole at the moment. Maybe tomorrow will be a better day
    Dear Kernowcluck,

    I am writing from MND Connect regarding your post about your hospital bed.

    From the description of your difficulties I would suggest that you contact the district nurses from your GP surgery and ask them to come and carry out an assessment for a pressure relieving mattress.
    You have also mentioned that you are experiencing difficulties with your breathing when lying flat. Have you had a respiratory assessment? If not your GP or Neurologist will be able to refer you.
    It may also be helpful to speak to your OT to see if she can suggest ways to help you move more easily in bed. Have you thought about having silky sheets? These may aid your movement whilst in bed.
    Kind regards
    Jacqui
    MND Connect

  10. #30
    Forum Member Dude's Avatar
    Join Date
    May 2015
    Location
    Merseyside
    Posts
    2,611
    Hi Kc . Cheer up. You need an air mattress that adjusts to your weight, sounds like Terry & Ellie have the RR version. Maybe clip duvet onto actual bedframe angle iron if is like that. Sleepover carer is there for every single thing, toilet, brew, NIV, ironing etc. 2 Carers take me to my room at 7.30pm toilet, wash hands face, teeth, meds and tea. 1 carer goes home. I sit on edge of bed with 6 pillows lined up watching SKY or Corry. 10pm carer puts me to bed. You need an overnight carer. Dude x

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •