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Beds / mattresses
I don’t have any special sort of bed other than a side rail to buff the array of pillows to keep me in a good position.
I’m comfy laying down – but when I get up, my legs are brought over the side and I’m rolled/brought up to a sitting position on the side of the bed. The problem is when I role, my bone/pelvis around my bum area rolls over my leg tissue and causes agony during the sitting up bit. I’m not even sure a profiling bed would solve anything as I can’t lay on my back to electronically move into a sitting position (too arched in my lower back). Having said that, if my legs were raised, and then lowered at the same time as my back came up, that could work. Swivelling from the sat up in bed position to sitting on the side of the bed would possible be tricky….
So… how to you get out of bed and does anyone else have this problem? Any advice on beds/mattresses?
Re: Beds / mattressesHow about the simple, non technical, non electronic “Bed Leaver” ?
It is a very solid anchor attached to your bed with a vertical
steel “D section”.Instead of all the swivelling on the amorphous and giving mass
of your soft bed it is a solid thing to grab hold of and manipulate
yourself on. Either from lying to sitting or sitting to standing. It
is also a brace for you or pillows. Cheap and low tech.http://www.adaptacar.co.uk/bed-amp-chair-accessories/bed-lever-2-in1
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Beds / mattressesI can sort of see where you are coming from.. I cannot sit up right in bed because the pressure through my hips/pelvis causes nerve to be sqwuished and I go numb then get violent pins and needles all the way down both legs. I cannot recline in bed because my back arch is just too pronounced. So it is lay flat on back [for a while before bits start to ache], lay on side or on front [my prime sleeping position].
In a way, we need a method to get from laying on one side to seated on bedside without any bits compacting together to contort, numb or generally protest. It is figuring out how to either buffer/cushion leg bits as they get rolled on, or how to get a more rigid upper body stance so it does not roll on the upper leg flesh. HHhhhmmm ……..
I think I have more mobility than you, so my method is .. lay on back, out on back brace, with palms under each bum cheek, in a 3-2-1 hmphh physic law practising way I heave myself up and round to sitting on bed edge position, retrieve hand stuck under pivoted side. Done. However this method does not work on a bed higher than my lower leg height – I hate not being able to get my feet/toes on the floor.
Considering the abs pulling involved I should have an 8-pack, sadly more like 6-pack of walkers cheese and onion.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: Beds / mattressesTo sit round from lying down my PA pulls my legs whilst I lay on my back until my feet are just over the side of the mattress. I have a slip sheet under me so it is quite a smooth move. Then I brace my arms together and someone pulls me into sitting, legs just do their own thing, move on their own, and feet land on floor. My bed at its lowest is quite low so there is no danger of me slipping too much before I am balanced. This is not such an easy manoeuvre if in a different bed – higher or squishier mattress and we have to be v careful.
My bed is a Baltic turning bed and I have a propad mattress on the top. It is thinner than the standard mattress but it works for me because I am small. The mattress that came with the bed was too high, couldn’t reach the floor and decided it was too dangerous to have something to put feet on.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: Beds / mattressesMy bed is a baltic too, I sit up with the bed, once sitting my carer slips my hoist sling behind me and i’m then hoisted into my chair.
Re: Beds / mattresses@amgmod wrote:
It is figuring out how to either buffer/cushion leg bits as they get rolled on, or how to get a more rigid upper body stance so it does not roll on the upper leg flesh. HHhhhmmm ……..
Yep – that’s the conundrum! I can move only my fingers really in bed so it’s all up to my husband to get me up.
I called my GP to see if I could speak to an OT /get a referral as apparently this is how it works for beds (health stuff). Anyway, the district nurse called and offered me a kind of mattress topper for pressure relief (I don’t recall what it was called). I kind of got it into my head that I need someone to go through my positioning, movements etc to work out what might get me and hubby a better nights sleep and not cause me more problems. I am meeting this person on Friday for an assessment but I really don’t know if that is just going to be the district nurse! Feel a bit deflated!
I thought an OT from the hospital would come unless they are also OT qualified?? The sticking point is, they said I don’t spend long enough in bed to get much more than a topper – I don’t qualify! I am in bed for around 7-8 hours (can’t stay any longer as husband has to go to work and PA doesn’t come in until 8 – and I don’t want to be in the house unable to move in bed on my vent with no one around as I would freak out). If that is the case then I will never qualify for anything useful so perhaps the rule could be bent if they visited me and tried to find out a bit more.
The second eligibility criteria seemed to be they could look at it if I already had pressure sores – so chronic pain and ‘almost’ a pressure sore etc etc didn’t cut it :-/ . This seems to be all back to front. I know it’s a hec of an amount of money but…
How did you guys get one of the positioning beds – they look really good. :-) Wish I could go with a catalogue and give them ten good reasons why they should get me one lol. I think they would just laugh. I read all the MD stuff about how important night time positioning and stuff is – but how do you get that across. I seem to make an awful fluff of assessments which is totally stupid seeing as I worked with community OTs !!
In the mean time – air flow mattress and posh bed have gone on the lottery list… :-) or a saw to chop of sore leg if the win is less than a tenner.
Re: Beds / mattressesOkay – I know I a wrong to do this, applying common sense and logic …. surely if you had a better bed and a better sleep pattern you would likely be in a position [pun not intended] to spend longer in bed comfortably, and thus qualify for the extra help. I think some of thee criteria boxes are there to deter rather than disqualify.
I wonder if the District Nurse is someone who can then report back to Hospital O/T to hopefully add gravitas to your need. I’d be tempted to stress the pain angle and add that just because you do not have full-on pressure sores does not mean they are likely to occur.
Let us know how it all goes.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: Beds / mattressesWith my bed, it was turned down quite a few times when it went to panel. Before that, I had a similar response to you – that because I didn’t have any serious bed sores I didn’t qualify so there was a bit of arguing about who was responsible. My Social Worker threw a wobble when she was asked to go through the silly box ticking malarkey. So… they were saying that I had to get bad bed sores first – where is the sense??
I had to write a strong letter, outlining all the benefits that the Baltic offered me as they were not convinced I needed something so functioning and expensive. I think what swung it was me mentioning health and safety – that my carers were in danger of hurting themselves from moving me and having to bend at awkward angles to help me, the fear of my PAs suing Social Services perhaps?? Other points I made were that it would prevent me getting back pain, indigestion/acid reflux, pressure sores, sleepless nights and having to wake up my parents (I lived with them at the time) at least 3 times a night to turn me or sit me up. The best solution in my mind and my OTs was the Baltic turning bed as it solved everything. Other models would solve some but not all of the problems.
And like AMG says, applying logic and common sense, a healthier client/user/whatever the in term is these days and happy healthy PAs means less need for NHS resources or expensive agency cover for PAs with bad backs. How clearer does it need to be made I wonder?
Good Luck!
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: Beds / mattressesI had this problem too! Because I didn’t spend all day in bed and wasn’t terminally ill they wouldn’t fund a bed. I got round this in 2 ways.
1.I have a night carers and told social that this carer would have to be on a waking night shift if i didn’t get a new bed, this would have cost about £80/night, therefore a new bed would pay for itself in 2months.
2. I got the local Lions club to help part fund it and social paid the rest.
You have to be crafty at times and try and out smart these people to get the things you need.
Re: Beds / mattressesIt was the district nurse that came and she was really nice. She has ordered me a pressure relief mattress for the interim and spent a while calling round trying to find out how to apply for a bed. She found a huge form that she filled out to support my request for a bed and then strangely my PA had to sign it!
Basically the form goes to someone in charge of major purchases and they say yes or no! So now I wait and see what happens…. so fingers crossed.
Re: Beds / mattresses@criptic wrote:
Basically the form goes to someone in charge of major purchases and they say yes or no! So now I wait and see what happens…. so fingers crossed.
I assume if they say no, you wing in another form and another and another and another .. greasy wheel syndrome.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: Beds / mattressesYep, if it’s a no then I will find out why and reapply/appeal…. and so it goes on. Even if I could part contribute that would be better than nothing. I’m not against paying a bit or finding donations if I have to. I’ll do anything for us to get some better nights. :-)
Re: Beds / mattressesAny news yet?
Re: Beds / mattressesNo news on the bed
but the foam mattress feels good – much less pain :-) I wonder when I will hear…Re: Beds / mattressesFingers crossed it won’t be long. Good to hear the foam mattress is helping in the meantime
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: Beds / mattressesBed update! I now have to get an assessment from a neuro rehab team – they seem to have OTs that assess people with progressive impairments and someone I ‘should have been under’ a while ago. I’m still not sure exactly what they do but I’m hoping a formal assessment will prove I need a bed! I’d better go and perfect my wobble… anyone else had this sort of team involved?
Re: Beds / mattressesI haven’t seen a team like that for beds but my wheelchair team of an OT, physio and engineer were fab
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: Beds / mattressesBed update: Well had the neuro visit today and she came along with the community nurse. They were really nice and ‘with it’. They hadn’t any extensive knowledge of MD in relation to posture but had worked with other floppy people (some using a vent) so they knew what was going on. I expected lots of forms and tape measures to come out to look at how I lie down – but she was really good. We just chatted and did a demo getting into bed and went over posture, using my vent, where the sore bits were and she felt my shoulders to understand how they move around all over the place.
All in all it was kind of like an OT/Physio chat but without all the box ticking. They said I was quite complex (ehm yep :-) ) and they would go and look into beds and things to hold my position. They also said they would give some thought about how I can get a portable vent other than rely on the Brompton not doing it (my social worker, this team and my local respiratory consultant all says I need a portable to get out the house but it’s a bit of a battle getting RBH to give me one :-/ ) .
I think the next step is to try out some positional things and profiling beds and then they know what they have got to see if they can find funding for. At least I felt like I had a good hearing if nothing else which made me feel better.
Re: Beds / mattressesSounds encouraging criptic! Here’s hoping they sort something out ASAP
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: Beds / mattressesI think I have the opposite problem. I was told I HAD to have a profiling bed and pressure relief mattress and had my lovely wooden bed and bouncy mattress put away. Result was that I could no longer turn over in bed so had to wake my PA up several times a night, I had a sore back and so did PA who had trouble putting my splints on and doing physio. Since I had the thing for my PA’s benefit off it went after trying out for 3 months.
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