Getting off the loo

[Dude]

Hi Elaine I agree with Ellie (for once lol), you need to think about having a carer to help you. I know you want to retain your independence but having someone help you a bit now will help the transistion with needing a bit more. You know what I mean. Do you still climb stairs. Have you thought about wetroom. A hospital bed will be great I've had one for a while. My duvet used to wrap around me but i put clamps on one edge of the duvet and clip clamps onto bottom bar of cot rail to hold it stable. Dude x

http://www.diy.com/hand-tools/bq-spring-clamp-l380mm/170845_BQ.prd

[Kernowcluck]

Thanks Ellie and Dude.

I have carers to come and get me up and dressed in the morning. I can just about manage a stairlift with help so I come downstairs and I'll try and walk for a little with my trolley just to loosen up a bit. I then sit in my riser recliner but I can't get out of it until the carers come back at lunchtime for a wee and a walk. My family help me to get to bed (then I'm not governed by carers times. )But in the night I have no one although my family live with me, my daughter in the Annex with my two grandsons and my son and daughter in law, plus bump, who all work full-time. I try not to drink from mid afternoon onwards (yes I know that's wrong ) but I get to 4 o'clock in the morning and my bladder is fit to burst but I have to wait until somebody gets up and rescues me.

I have been trying to organise the conversion of a downstairs room into a bathroom since last December and could write a book about the frustrations dealing with so many different people who don't seem to pull together. If I could get that done it would be a big weight off my shoulders. I have a bio bidet waiting to be installed and have been messed about for weeks by the plumber who needs to do his bit first.

Yes Dude I tuck my duvet in to the other side of the bed but because I can't move my arms I still manage to get into trouble with it. Either it has disappeared down the bed and I'm left uncovered or it's come up over my face and suffocating me. Death by duvet one way or the other.

KC xx
By the way I love your optimism Dude, could you please just hurry that cure on a bit- sorry to be impatient!!

[Terry]

Hi KC;

Sorry that I can't help you much, I am sure that many of us know what it's like being tired up and trapped by a duvet.

I did look at ways of having it strung on four pulleys and having an remote electric winch to pull the thing up a down.

Most of the year I clamp a large sheet to the foot board and to my high grab bars making a tent. . This means that I am cooler and I don’t have any sheets etc to deal with when I am turning or doing anything else.

I don't use the monkey bar for lifting but it's very useful for hanging my remote switches, bell and sometimes the bed control on.

Love Terry

[Dude]

KC Can't your daughter help you to the toilet before you go to sleep. Why can't you get out of recliner. Do you have a door bell to alert anyone in the night. Sounds like people are not helping or are you stubborn. The cure will be along in a bit. The clamps will stop duvet being untucked and from slipping down bed. Dude x

[Kernowcluck]

Hi Dude, my family are great and toilet me before I go to bed but this is usually quite early as they all go to work early so this makes for a long night.Without them I think I would struggle to stay at home so I am very grateful. And yes I am stubborn but I'm a great believer are in doing as much for yourself as possible. I cannot get out of my riser recliner any more because my legs and arms are too weak , It's a bit of a blow but that's just how it is. My hospital bed is being stalked installed as I type so fingers crossed I may be able to sit up and get my legs over the side and be independent throughout the night and I I am going to try to clamp my duvet.

Terry I have this vision of you in your tent, were you ever a boy scout? That might be a good option for the summer as I find it hard to control my temperature at night being unable to throw the duvet off or pull it back on again. Talk about necessity being the mother of invention!

Thank you both xx

[Ellie]

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.

[Dude]

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-Remote-Control-Sockets-Pack/dp/B004A7XGH8/ref=sr_1_2?ie=UTF8&qid=1459942737&sr=8-2&keywords=remote+electric+socket

[Kernowcluck]

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.

[Terry]

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

[Dude]

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

[Kernowcluck]

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

[Terry]

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

[Ellie]

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.

[MNDConnect]

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

[Dude]

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