Electric Beds

[Yorky]

Hi everyone,

I'm new to the forum having just heard about it.

My Dad has MND and has now lost the use of most of his limbs. For the last 6-8 months he's been in an electric chair and it has worked really well. It can stand him up as well as tilt him back almost horizontal at night so that he can sleep in it. Unfortunately, because he's spending too much time in the chair he is now getting sores. We therefore need to find an alternative solution to him sleeping in the chair.

Does anyone have experience of the Rotoflex beds or any similar beds that move the user to a standing position so that they can then be lifted into a wheelchair / onto commode? They are expensive (even to rent) but I'm wondering if it might be the best option.

I just wondered if anyone else had encountered a similar problem and what they did as a solution?

Best wishes,

Yorky

[Sarahw]

Hi York,

have you spoken to your OT? My one offered me a free bed which although it doesn’t go to standing, I didn’t need it at the time. An addition to this is a mobile hoist - again provided by OT. They can offer all sorts of alternatives so i would try them out before you pay for expensive items.

[Bowler]

Hi Yorky welcome to the forum. Your first port of call should be your OT to get a full assessment for your dad. From that they should provide free what equipment is need now.

[Suefromwakey]

Hello Yorky, my husband has a "Hospital Bed" provided by the OT. There are limits I think to how high you could expect one to go............a hoist is the next thing.

As for the recliner...........Albert uses his for hours on end throughout the day/evening he was given a gel cushion also provided by the OT.

Good Luck

Sue

[Ellie]

Yorky A warm welcome to the forum.

Save your money and get your Dad a hospital bed, as others have said. If he needs a hoist to further help him getting out of bed, that will also be supplied.

Whilst those fancy beds look great, as do the fully functioning people using them, the reality of someone with a progressive muscle-wasting neurological condition getting much benefit from such an expensive bed vs a standard 'free' bed, is very limited. Nearly all of us eventually keel over if not supported when getting out of bed, so the purported independence of a Rotoflex bed is short-lived or fanciful in ALS/MND.

That said, for other forms of MND, they may be of enormous benefit or, even with ALS, if they can be rented, they might be useful for some people in the early days.

Love Ellie.

[Yorky]

Incredibly useful responses and all provided unexpectedly quickly, thank you all!

As you say Sue, to date, the recliner has been wonderful and my Dad has basically lived in it for the last 6 months day and night. We have a gel cushion, but it doesn't seem to be stopping the sores. He basically needs to spend less time sitting on his bum!

We have a hospital bed which has been provided by the OT. We tried using it with the help of the OT, but he was rather dragged across it to get on and off the bed and this then made the sores worse. In earlier stages of his MND he was fearful of being stuck on the bed and needing the toilet as he is not able to move himself - though this is less of an issue now as he has a bag attachment that he keeps on day and night to wee in.

I agree regarding independence Ellie. As his limbs no longer support him he has to lifted. The thinking with Rotoflex was that it might be easier to get him into a position for us to lift him on to the commode or to lie him back down, but it is an expensive option for what I appreciate now may not be much (if any) additional benefit.

The message I'm getting from your responses is that it's probably time to start looking at getting a hoist. We did ask the OT about a hoist the other day and they weren't overly keen for some reason, but I'll raise it again. One thing the OT mentioned was that a hoist needed two people to operate it?

To give some context of the stage my Dad is at. MND began to affect him about 2 years ago, starting with what he thought was just a bad leg. Its progress has been gradual, but consistent. His speech went about 6 months ago and he now has a feeding tube fitted. Three of his limbs have given up, but he has some minimal movement remaining in his right hand so can type words. He's been doing very well and was not in much discomfort until he started getting sores.

I'm sure we'll get it sorted and I appreciate all the help. I wasn't sure if anyone would reply, so I am very grateful that so many people responded.

Good wishes to you all.

[Bowler]

Yorky. It’s not true that a hoist requires two people. I and many others have / are hoisting loved ones on our own. The two people I believe refers to outside Carers. Talk this through with your OT

[Ellie]

Yorky Oh, I didn't know he is plagued by pressure sores, the poor man 😟 Who is looking after the sores, treating them etc?

You're right in thinking a period off his bottom is needed and, whether in a chair or bed, he needs maximum pressure relief in a cushion or mattress - for the mattress, that means a good alternating air mattress, with a short recirculating interval and adjustable firmness, and not an entry level mattress. It shouldn't take you, or someone else, to fight for proper pressure relief products, but by the sounds of your dad's OT, it will take a fight to get equipment. It's much cheaper to prevent pressure sores, rather than to treat them, and it's unfortunate that your dad's OT and nurse aren't enlightened enough to be proactive.

It sounds like a hoist would be very useful. If the OT supplies one, generally there is a 2-person 'rule', even though many can be used effectively by one person. The OT can train 2 family members how to use the hoist, if things go well after you all get used to how the hoist transfers work in practice, you may decide to do things differently in his own house, if you get me.

I'm sorry for ranting about pressure sores! I'm one of the lucky ones who has an OT and community nurse whose sole mission for most of the time seems to be my skin integrit and avoiding pressure sores at all costs, that includes regular inspections 😄

Take care. xx

[matthew55]

My community neuro head nurse organises my beds and they're free for order, delivery and fitting. My current bed is electric with air pump side tilt, bed head raised, knee area raised and the whole bed is raised. I use it for NIV use and currently sleep on a double bed air mattress with integrated pump which cost me around £100. 😁🤗😍👶xx

[shelly21]

matthew55 COULD you let me know the make of the double air mattress you use please x

[matthew55]

Not sure but I got it on Amazon

[Suzy Pordage]

Hi Has anyone heard of a levix mattress, I've not heard of this before but one of my clients reported it was specifically good for people with MND. thanks

[DeeH]

Ellie

Good afternoon,

Can I ask a question about the air flow mattress?

When you say ajustable firmness? Asking because I can get Thomas off and on the basic pressure mattress because it doesn't react much to the weight.

Our concern is that an air flow mattress would stop him sitting on the edge of the bed, he can hold himself up.

His bottom has an tiny break reacuring as previous break and healed due to the original chair tilting slightly before loaner chair.

Waiting for a intergrated pressure relief chair, ordered since November by OT. Possibly arriving in March!!!!

Cheers

Donna



Carer for Husband, diagnosed in July 2020 MND of Fail Arm Type.

[Ellie]

When you say ajustable firmness?
Our concern is that an air flow mattress would stop him sitting on the edge of the bed, he can hold himself up.

Air mattresses (should) have a 'Max Firm' mode for patient handling - means what it says on the tin, provides a firm, stable surface, so Thomas should be able to sit as before, or the mattress could be switched off altogether if it deflates quickly enough.

Max Firm mode on my current mattress lasts 20mins before reverting to alternating mode, of course it can be pressed again, if needed.
This mode is handy for putting on a hoist sling and dressing, amongst other things.

His bottom has an tiny break reacuring as previous break and healed due to the original chair tilting slightly before loaner chair.

Oh Donna, I don't like to hear of pressure sores... Hopefully it is being treated. xx

[DeeH]

Ellie


The sore bit has healed again. Being very vigilent. It is just a very vunerable spot, it is like a graze as Thomas moves around his chair a lot.

I will chat to Thomas again about it, the air matteress

Still waiting the measured chair with in built pressure relief.

Thomas said he has the most inspected and photographed bottom in the land.

We have cream and my eagle eye. Plus the district nurse is available by phone but as I was a nurse I get really annoyed with pressure area problems
on my watch. Usually occurs after bowels issues.